Seasons

What Do You Do When It's Cold Outside?

2012-01-13T14:06:00.001-05:00

A friend asked me the other day how I got all my Valentine's Day decorations. The truth is it's just too cold in January for me to want to go anywhere so I sit inside and craft. This banner is my latest addition. (Thank you, Pinterest, for feeding my craft addiction.)

C Turns the Big 5

2011-09-03T18:03:00.000-04:00

This week our little C turned five. He woke up on the morning of his birthday and told me he was really glad he was five now because it was hard to hold down a finger for four. I told him he actually didn't have to hold up any fingers and could just say the number, and he has really latched on to that idea. :)
When asked what kind of birthday party he wanted, he promptly answered, "CARS!" (referring to the movie). Though this theme is a bit commercialized, we felt it was more important to give him what he wanted. And I think he was happy...

Saw this idea on a blog, and it turned out to be pretty easy.

Pin the wheel on Lightning McQueen

License Plate Craft (materials from the Dollar Store!)

Mater and Lightning McQueen Relay Races

I've never seen a group of kids line up as fast as these kids did when they found out they could get inside him to race.

And of course Mater was full wheelchair accessible. It wrapped around back of C's power chair.

Pizza, watermelon, root beer, and CARS cupcakes!

C and his friend E even had the same CARS t-shirt. This is their "silly face" picture.

Goodie Bags to say "Thank you!"

His little smile at the end made the prep time totally worth it. He said, "Mom, this is the best birthday party I've ever been to in my whole life." Such a sweet boy--he always melts my heart. He almost makes me want to do it all over again tomorrow. Almost.

Beginning, The Beginning, The Beginning of Our Story

2011-09-03T14:19:00.002-04:00

The day finally came. After all the hype (and all my worry) our little C started Kindergarten. His first day was perfect, and he now loves going to school and gives me a huge smile every day when I pick him up and always has something exciting to tell me about how his day went.

So go ahead and tell me I was all worked up for no reason and worried for nothing. I don't mind hearing it. After all, I'm a mom. Worrying is my job.

The Pintrest Obsession Begins...

2011-09-03T13:58:00.000-04:00

For any of you who are not aware of Pintrest well, you should be. It is the best thing that ever happened to my craft & sewing addiction. A friend told me about and I have been telling everyone I know about it ever since.

So when I needed a cute gift for my sis-in-law's wedding, I went there and found an easy answer. My friend "pinned" this idea from a blog, and I "repinned" it. To find the original tutorial click here. The wired ribbon I already had, and the cute charm I found at Hobby Lobby.

Don't know if you can tell, but the inside is their wedding invitation, cut into strips, and curled around a pencil.

Simple, but it is always nice to have something to hang on your Christmas tree to remind you of your special day.

Kindergarten Prep

2011-07-23T08:27:00.003-04:00

As hard as it is to believe, our little man is finally old enough to go to kindergarten. I think I have finally overcome the denial stage, and have moved on to full-out panic. I know as a mother of a "typical" kindergartener I would have been a little paranoid and worried, but I would have told myself to chill out and get over it and
after a week or two I would have been okay. But with my little "special needs" man, I'm worried my paranoia might never end. My attempts to overcome it have been as follows:

1) We have already attended multiple IEP meetings (Individulalized Educational Plan - mandated by the federal government for all kids with an issue that affects their ability to learn). The school system pretty much already planned on hiring an aide for C, so when we mentioned it they just jumped on board. Having avoided that fight was a huge blessing in and of itself.

2) The principal of Chancey Elementary, where our son will be attending, has a child who was a kindergartener last year and another child with special needs...so she gets it. I had a 30 minute conversation with her in her office and by the end we were both crying. She also said she would be carefully choosing his teacher for next year.

3) The teacher for next year is AMAZING. Can I say that before school has already started? Okay, so at least it is my initial impression. In the IEP meeting she attended she kept coming up with ideas that might help C, and at one point started crying (and I cried, and his preschool teacher, who was also at the meeting, cried) as she told us "It will be my privilege to teach your child." Then I went to see her yesterday and she told me about how she already had someone in to help arrange the room so C's power chair could reach everything. She also is raising one of the tables up so that he can pull his chair under it, and ordering new chairs for all the other kids so they'll be at the same height as him and he won't feel left out. (I had to force my arms to stay down because I suddenly had the intense desire to hug her.) And she was already awesome before C ever showed up to her class--she has won awards, obtained a thousands of dollars technology grant for her classroom alone, and is featured on a commercial for the school district.

4) The aide they have hired sounds like a great choice. She has been teaching for years, part of which was spent with C's teacher. She lives in the neighborhood, has three older children of her own, and is soft spoken but willing to speak her mind when needed.

So if that all wasn't enough to release my paranoia, you'd think my need to concentrate on something else might just do it. That something else is the possibility of adoption that is looming on the horizon (finally) for our family. (Notice details are purposely omitted--no adoption is ever for sure, even once you have the baby, and we're just willing to share details.) C will go into school, leaving me suddenly alone all day, just as a new family member might come into our lives. We will see.

And yet, the worry about C starting school still wanders around in my head. I am hoping it will dissipate a bit after a few weeks, but I guess that remains to be seen. I think I've just decided that moms are just destined to always worry about their kids. Too bad they don't tell you about that side effect when you decide to have a family. But as much as we love that kid, I don't suppose it would have made much difference anyway.

Overheard

2011-07-08T13:28:00.002-04:00

C's friend: [as we pass the cemetery] You see that? It's a....military.

C: Yeah, that's where you can plant people when they get dead.

Seriously, how did we ever entertain ourselves before we had children?

The Tax Man Brings You a Baby

2011-03-16T10:56:00.003-04:00

The other day, C was playing in his room and I was doing work in the office next to him. All of the sudden, he announces, "Look Mama! I got our taxes done!" I walked into find him sitting with paper he had scribbled on, and his Leap Frog calculator.

Now, being that he is the son of an accountant, I thought this was pretty hilarious. Our taxes were actually already done, but I assumed he must have heard us discussing them at some point and recognized there was some urgency there. So I posted the little event on Facebook and went on my way.

But then it started popping up in C's prayers: "And please bless mom and dad to get their taxes done." So then I started having some guilt--we wanted our taxes done because we wanted our return, but I didn't think we were freaking out about it or anything, so I couldn't figure out why the kid thought it was so important. So finally, after the fifth or sixth prayer, we did the logical thing and just asked him why he thought we needed to get our taxes done. And his reply was, "So then we can get a new baby!"

I assume he must have overheard one of us tell someone that we were trying to get our tax return money so we could put our adoption profile on a new website that would give us a lot more exposure. Our sweet, sweet boy just had it worked out that taxes = baby, so he was doing his best to help. Sure do love that kid.

So we explained it a little better to him, and now the taxes talk is gone. Instead he prays over every meal and at night that we can "get a new baby for our family," which seems fine and appropriate...but also that Heavenly Father will "raise up a spirit". And therein lies this week's mystery--no clue where he got that one from or what it means.

What's a Pirate's Favorite Restaurant?

2011-03-07T09:11:00.007-05:00

Arrrrrrrby's! Here are some photos of my favorite pirate. Could he be any cuter? I don't think it's possible.

C's Aunt Katie always has awesome surprises when she comes over and this pirate gear was a big hit. Thanks, Katie! We love you!

I don't know about you, but I'm totally afraid.

Goodbye Thomas

2011-03-05T18:09:00.003-05:00

C is about 4 1/2 now, and in watching him at church I've come to the decision that it is time we move to more gospel centered "entertainment" for sacrament meeting. I've kinda been letting the toy cars, toy story figurines, and monster coloring books slide. Don't get me wrong--I'm not judging anybody else. You do what you gotta do to make it work for your family. I just think my calm little guy is ready to make a change.

My hope is that I can make it fun enough then C will roll with the change. About 8 months ago we decided to make him wait until after the sacrament was passed to pull his stuff out, and that has been going pretty well. We have always taken his Thomas bag (a little backpack with Thomas on it that seems to entrance other children for some reason) to church with all his sacrament meeting stuff. So I decided the first step was to have a church-ier bag.

I have sort of an obsession to felt right now, so this is what I came up with.

I'm very grateful to my mother-in-law for the amazingly sharp sewing scissors she gave me, even if they do make the felt addiction possible. I think I just love felt because you can create with it without stressing how the edges will be finished.

Next step: church-centered file folder games. Anybody have any suggestions??

How do you spell PEACE?

2011-03-02T10:07:00.007-05:00

In early December we got out all the Christmas decoration boxes, cranked up the holiday tunes, and started decorating the house. Adam was unpacking the stocking hangers, which usually spell out PEACE...and then few minutes into our activity, I turned around and saw this:

I laughed loudly and for quite awhile, and we actually left it for a few days. Adam, who can always make me laugh, did this on purpose because few things could describe the last year of our lives better than those three letters...for two reasons.

First of all, for about the last year Adam has been working on becoming a CPA. The test is given in four parts. People typically study for a few months for each section. Each section's test takes about four hours, and in Kentucky the pass rate for each section averages around 46%. Only 10% of people pass all four sections on their first try. Adam has now taken all four sections, has passed three of them, and we are waiting for the score on the fourth. To say his schedule has been hectic is an understatement. He typically gets up between 3-5am, studies for awhile, then goes to his full-time (+) job. He studies for about 45 minutes during his lunch at work, and then often comes home and studies for another hour. I have no doubt this is the hardest personal challenge he's ever faced, and I am completely impressed and overwhelmed by his perseverance and dedication. He says he has guilt about not spending more time with C and I, but I don't see why because he still somehow manages to spend time each day with C and take me out about every other weekend for a date. And I know with perfect surety that whole reason he is doing this all is for us.

The second reason that picture characterizes us so well comes not from the letters themselves, but from the quantity of letters. I bought that 5-letter stocking hanger set before we had any kids, in anticipation of the three children we planned to have. I figured if we decided to go on to four then I could come up with something else to do.

But they say if you want to make God laugh, tell him your plans. And so, though we would have had all three by now had life gone as we expected, we instead find ourselves praying every day that we will finally be able to adopt and just at least make it to two. And yet, through all the waiting we still have hope. With all the work we've put into the adoption I feel as if I've experienced the difficulties of nine months of pregnancy in a different way, and should be expecting the new baby any time now. I actually find myself occasionally referring to our "kids"...I guess because deep down inside underneath the disappointment I know it will happen when the time is right.

But no matter what our letters are, I can say that through it all we have truly been blessed with peace from our Heavenly Father who is so truly aware of what our needs are. And who knows...maybe next year it will be CAPE...because we'll have a new member of our family, and my superhero husband will be a licensed CPA!!

School Anxiety

2011-02-02T14:41:00.003-05:00

Before C was ever born, I knew I would be one of those moms that cried when their child went to kindergarten. I used to get stressed out when Adam had his first day of a new semester (though he was completely laid back and not nervous at all). When C started preschool I expected myself to boo-hoo a bit, but I came away doing pretty well.

And now, we are eight months away from kindergarten and the crying has already started. But not for the reason I would have thought. I am ready for C to go to kindergarten. I know he is craving more socialization than I can give, and academically he's ready. He counts, draws, cuts, knows his letters and sounds and is just starting to sound out words. But what is killing me is Jefferson County Public Schools (JCPS).

Don't get me wrong--I do believe he can get a good education at JCPS and be prepared to enter college. But their whole process boggles my mind. JCPS has what they call a "student assignment plan" where a school can only accept up to 85% of the kids that live around them...the other 15% have to be bussed from somewhere else in the county to make sure the school is "diverse" enough. So when you register for kindergarten you choose from your cluster of schools--a first and second choice from Group A, and a first and second choice from Group B. And then you pray that you get one of them for the three months it takes them to decide.

Sound confusing? Yup. It is. And then just give the top of that problem a nice coating of "special needs child" and you get where my tears are coming from.

We've also been working on getting C's IEP written, so I have been touring preschools, elementary schools, and special needs schools, talking to PTs, OTs, resource teachers, principals and making appointments all across the county. And when it comes right down to it the thing I've learned is this: all I want is for C to go to the school right next to our subdivision. Curse you, JCPS!!!

And here's the best part...as stressed out as I am now, I know that in eight months it will all be decided and C will start school and be gone from me from 8:45 - 3:45 every day...and instead of being stressed out I will be twiddling my thumbs looking for something to do. It will be the perfect time for a new baby to make its way into our family...but as we know adoption follows no one's timeline. We'll just keep our fingers crossed and keep praying and know that someday when that new child comes and gets old enough for kindergarten, we will know EXACTLY where the best place is to send them!

"Almost" Day

2011-01-27T15:29:00.004-05:00

So why is it so much easier to post about the bad days? I guess there is something to be said for catharsis. So in the true spirit of catharsis, I present to you my "almost" day.

Yesterday morning I almost went to visit a Jefferson County Public Schools (JCPS) preschool. C has been going to a private preschool, but because he has a physical disability they have offered him free preschool on top of that. So I was supposed to visit one preschool yesterday...which I almost did but then we had a snow day.

And then I almost observed at a different preschool today...but then we decided we didn't have the heart to send our child to that school--40 minutes away downtown--no matter how good the school.

I was almost able to sub at C's preschool for a little extra cash, but by the time we figured out I wasn't making the preschool visit and called the sub coordinator back she had already found a replacement sub.

So I dropped C off at preschool, and then I was almost able to get done all the things I had planned to do in my 2.5 childless hours...but then I started emailing Adam at work about stuff and got sucked into the game of Spider Solitaire I was playing while waiting for his emails. I know, you can say it---totally lame. I promise I am not an "online gamer" but I think this morning I just needed to veg a bit.

Then, I was almost late to pick up C because I got this awesome ticket (first in like 10 years) a few months ago on the way to get him so I'm paranoid a cop is going to pull me over again so I go super slow.

Next, I almost lost C at the school. How do you lose a child who can't walk at a school full of teachers? Great question. He was in his manual wheelchair and I parked him outside the teacher's lounge door so I could run in and get his mobile stander. I left the door open so I could see him but a teacher came in behind me and closed the door. I might have been in there 25 seconds, and when I came out C was not there or anywhere in the hallway. Now I know he can move the manual chair himself, but he doesn't go very fast. So I started to freak out and was yelling his name, when his assistant teacher came out of his classroom smiling and pointed inside her door. I ran to the class and sure enough, he was "hiding" in the classroom. I really don't see how he could have gotten that far without a push so I assume his assistant teacher helped him hide, but you'll have to excuse me if I don't think it's very funny to hide a child from their mother. I did not express those feelings, but trust me--I felt it.

So I got C in the van and was loading the mobile stander, and I turn around to see his manual wheelchair, which I know I put the break on, taking itself on a merry journey across the parking lot, careening toward a parked car. I shot across the lot and grabbed it as it almost made impact. [At this point in my day, yes, I am starting to think the manual wheelchair is possessed.]

We got home, unloaded, and settled, and my sweet boy made me smile several times. Kids always make things better. And I was almost my normal happy self again...when the phone rang. It was the Medicaid office calling to tell us we were denied for the new Medicaid program we were having C apply for and have been waiting to hear about for three months. Definitely qualifies as "bad news" because it would mean a lot more things would be free. We will of course appeal and hopefully should be approved.

So, there you have it. A day of almost. And now, as I'm reflecting back about it, I realize that I almost forgot one thing that I know to be absolutely true...that if you get over one bad thing, another is bound to come your way because that is just how life is. It was, in fact, designed to be that way. The point is to find your own happiness in the middle of it all. So I better run, because I plan to "chillax," as C says, and watch a bit of Scooby-doo with him so I can look back on today as the day that I almost had a bad day.

Our Unplanned Fire Drill

2010-11-02T10:26:00.002-04:00

When we were first married, Adam always used the buzzer on his alarm. I HATE buzzers...ever since I was a teenager and my parents made me use this alarm clock from 1979 with a buzzer that sounded like a rabid bird. Needless to say, I quickly won Adam over on the idea of waking up to the gentle sounds of the radio.
This morning I would have even taken the rabid bird over what I got. Adam woke up early and was in the shower, and C and I were snuggled in our beds still sleeping in the cold house. (We left the heat off last night and it got a little chilly.) All of the sudden I heard the smoke alarm start blaring in the hall outside our rooms. So, so loud...I swear I can almost still hear it. I jumped straight out of bed, and if the adrenaline from the alarm wasn't enough then the blast of cold air from throwing off my blankets gave me just what I needed to go racing out of our room.
As soon as I got to the hallway I could see the smoke, but I quickly determined our death wasn't imminent. Apparently, Adam had kindly started the fire in the living room when he got up to warm up the house...not knowing that last night I closed up the flue to keep out the cold air. So instead of the smoke being pulled up the chimney it just made its way through the house.
I started batting at the smoke alarm with a blanket, but being vertically-challenged I wasn't quite making it. After a few jumps I finally got the thing to shut off, but being in my half-asleep stupor it didn't occur to me that if I didn't stop it at the source the problem would continue. After a few off-and-ons of the alarm, I finally clued in to what was going on and went to shut off the fire.
About this time Adam finally heard the alarm in the shower and came out less-than-fully dressed to make sure we were all okay and take a few swats at the smoke alarm himself. C was also obviously awakened by the alarm and was yelling at us from his behind the door in his bedroom, the door I didn't want to open to let smoke in his room...unfortunately a week or two ago was "fire safety" day at school, so he was pretty freaked out.
A few minutes later we finally got ourselves together and got everything shut off, got dressed, and were snuggling on the couch with the doors open sending smoke out and 30-degree air in. Now I think I still smell like smoke and my toes are frozen, but I believe the smell is out of all the rooms in the house. And, as Adam said, at least we know the smoke alarm is working just fine.

Bad and Worst are Good Again

2010-10-30T21:00:00.003-04:00

Tonight I am thankful for my husband. We got some really unhappy news tonight, and I told him with tears running down my cheeks how I just didn't know how to deal with it on top of all the other things we're struggling with. So he looks at me with a goofy smile and says, "You can just do what I do. When another really bad thing happens, I just say, 'Well this really sucks but it's still not as bad as ____.' So sometimes we can be grateful for the worst trial happening to us cause when a new bad thing happens that worst trial makes the new thing not look so bad."
So I actually laughed out loud. And then I felt much better. I'm really not sure if he's a genius or going insane...all I know is if that's insanity it's making me smile and I wanna be wherever he is.

First Day of School

2010-10-25T12:46:00.003-04:00

I know it might be October now, but I figured better late than never, right? In August (yes, I'm a slacker) C started preschool. I wasn't really worried leading up to this event...I've left him places for three hours before, and he always does fine. The school we chose for him was Friends School, and we truly love them. Their student population is 80% typical, 20% special needs...so with C's issue being a purely physical disability we figured he'd have lots in common with the kids there. Before school even started, we had a meeting with the Special Needs Coordinator & his teacher, a Parents' Open House, and Kids' Classroom visit/Open House, and a home visit by his teacher.

So, when the first day of school rolled around, I wasn't worried at all as I dropped C off in the classroom. He was so interested in all the new friends and new toys that I literally had to physically turn his face to mine so he would hear me say "goodbye" and know I was gone. As I walked down the hall and toward the front door, I was very impressed with myself--no tears, not even a sniffle. Then, as I took a step outside the glass door and saw my van parked across the parking lot, it suddenly hit me that I was getting into a car alone and not buckling anyone else in. I started to have this panicky feeling I didn't recognize....I knew I was leaving him in capable hands and I wasn't worried about that...and I finally realized that feeling was pure old loneliness. I was now a mom without a kid for three hours, twice a week.

Well, at first it was pretty depressing. If we had been able to keep to our original plan, I would probably be pregnant with our third and last child right now, and not waiting around for someone to choose us to adopt their baby. So then, that--of all things on this day--was what set off the tears.

But, I am happy to report now that preschool day is one of my favorite days. C LOVES school, and always has something cool to tell me about his day...he painted with apples or rode a fire truck or played musical instruments. I just can't feel guilty about being away from him...in fact I know he is getting things from school that I never could have given him. And...I now grocery shop alone!

How Goldfish Make Us Happy

2010-07-22T15:16:00.002-04:00

So this week I am trying not to drown in my guilt by simply assigning myself the "Bad Mom" award and moving on.
This is what happened...we have been working on getting C a mobile stander. In case you don't know what that is it is basically a manual wheelchair but you are in standing position instead of seated, which is much better for bones/muscles/breathing. He had a mobile stander before and could push it short distances like around a room or two, but not at....say the zoo. It has been in the works for months now, but we are still trying to get the right documentation to submit to insurance for prior authorization.
We have been anticipating this for a long time. We purposely found a home with wood floors and very low profile carpeting so it would be better for him and he could use it some to get himself around the house. Since he can't crawl anymore, he now just bum scoots around as far as he can which isn't always as far as he needs to go.
So, the other weekend Adam decides we need to clean out the garage--the last big stronghold of unpacked things. I reluctantly agreed, though I was really glad we did it once we were all through. About halfway through, I noticed our old manual wheelchair in the corner. Our First Steps physical therapist had given this to us as a donation from another family when C was about two and a half. It has all its parts, but has been well loved. When we initially got the chair, we put C in it but his little arms were too short to really get a good push in the wheels. So in essence it was a glorified stroller, but we wanted to have it for a backup in case the power chair was in the shop and he was too big for a stroller.
So there I am, staring at it collecting dust in our garage, and it occurs to me that the last time he tried that chair was a year and a half ago, and his arms are bound to have grown since then. And if he can push the mobile stander wheels, he can push the wheelchair wheels. I wish I had better words to explain my feelings at that moment, but "duh" seems all that is really appropriate. I cannot believe it never occurred to me to let him try it!!! So we pulled the chair into the house and wiped that baby down with Clorox wipes, and put C in it.
And what did he do? Started pushing himself, albeit slowly, around the house. He was so, so happy. He drove himself all the way into the kitchen and said, "Mom, I'm gonna get myself a snack" and when I walked around the island, he had pulled the lower cabinet door open and was just leaning up with an orange bag of goldfish in his hands. And then he just wheeled away like it was nothing and it happened every day and started stuffing his face. And I cried. He GOT HIS OWN SNACK!! I know I'm such a softy, but I am so proud of my sweet little boy and his strength...not the strength of his muscles, but the strength of his heart and his desire to grasp for whatever independence he can get, even when it's hard to do.

Bemembering the Cooler Days

2010-06-30T14:50:00.006-04:00

So since I haven't blogged in forever, I thought I'd post a few pictures of some cooler days earlier this year. I saw these when I was finally able to load what was in my camera, and believe me--with this heat wave I am longing for these days to return. (C always says "bemember" instead of "remember" so we've all taken to saying it, too.)

C is the one on the left. You'll have to excuse his snowman-like appearance...it was pretty cold that day and I got a little paranoid about him being too chilly playing in the snow with Dad. I can't believe how much snow we got-this doesn't even show the half of it. At this point we only had enough for a little-boy snowman.

Why yes that is my ruggedly handsome husband posing by the crazy fence at my mom's house (which has now been torn down and replaced!).

As cute as my boys are, this might be the best picture of all. Before the snowfall we left a paper plate with some birdseed on it on the table. Somehow under all that snow this squirrel could smell it there and dug it out!! He was only about two feet from the back window where we were watching him and you'd think he would have been afraid, but I guess desperate times call for desperate measures.

Is it too early to be looking forward to Christmas??

Blog Depression

2010-06-28T08:16:00.003-04:00

So...anyone who might have been looking at our blog has probably stopped...because, well, I've been taken over by this sort of blog depression. First, my camera cord that downloads pictures to the computer disappeared somewhere in my parents house when we were staying there waiting to close on our house. So I couldn't figure out a way to upload pictures (though I have since discovered an easier $10 solution). Then, we started using Gmail...which is awesome except that since we signed up on Blogger using a different non-gmail address, there is apparently no way to change the email address you sign in with to a gmail one without starting a whole new blog. I looked into this for days and emailed people...and then I was just mad at google for not being able to tackle that small problem. And somehow in the back of my brain I subconsciously decided if I refused to blog it would be punishing them in some way...when in reality they could care less what I do and don't do.
So anyway, now I'm over my anger and I've decided to start blogging again. Now I'm excited to see if I actually follow through. :)

The Day We Met

2010-02-26T11:52:00.004-05:00

So for some reason I've just been thinking over and over about posting the story of how Adam and I met. I just started this post yesterday, and then this morning before I finished I read my awesome sister- and brother-in-law's story of how they met and now I am happy to be part of a trend. So here goes...

It was the fall of 2002 and I had just graduated from BYU. I was kind of exhausted with relationships, working on getting over someone I couldn't let go of and someone I couldn't hold on to. I was planning on going to graduate school, but after much prayer I decided to take a year off and work. I met an awesome friend, Kristen Curran, and we almost immediately became inseparable.

On October 26th, we decided to attend a young single adult activity our church was having at a church member's farm. We all sat in a circle around a campfire and introduced ourselves. I have lived in this area since about 13 so most of the people I already knew. But one stood out--this tall, attractive guy who was talking to an old friend. I assumed they were probably there together, so when he got up and introduced himself as being a member of our church and having lived here since he was 10, I was completely surprised. But I figured he was probably too cool for our little group and sort of dismissed him. My friend, Kristen, however, was super friendly and at the end of the activity we ended up inviting him to come with our group to a haunted house (that ended up being really lame) and later to Denny's.

A few days later we all got together again, and then Adam became a permanent fixture in our group...and he and I really hit it off. I was SO not looking for a relationship, and I think it ended up being the perfect set-up for me falling deeply in love because I was completely disarmed. We became good friends and I realized I was falling in love and he was coming, too. I think the point when I really came to the realization was a time when we were sitting across the room from each other at yet another single adult activity playing games. Adam caught my eye and winked at me, and that one wink felt like the best hug I ever had.

Our first kiss was in a friend's grandparent's house...bizarre I know. Everyone else was in the basement and we both came upstairs at the same time. Adam swears he kissed me first, but that's not exactly how I remember it. He got himself really close to me (which was good because I'm not sure I would have had the guts to do that) and then since he was already there I just leaned a tiny bit closer and made it happen. I consider this as one of the best compromises of our life together. :)

Our first official date actually came after that. I know that sounds scandalous, but we just sort of got together while hanging out with friends. After we both sort of accepted we were an item, we went on our first official date to Ruby Tuesdays.

By the end of the first quarter of 2003, I think we both had a pretty good idea where we were headed. And then on a Monday in May, a day before the birth of our third nephew, Adam proposed to me while we were eating DQ Blizzards (still our favorite) at a beautiful state park near my parents' house. He had wrapped up the ring and buried it in the blizzard. When I found it he went down on one knee and asked me to marry him, and when we got back to the car he handed me some roses (that I had somehow overlooked?!? in the backseat). We initially thought we would be married in December, but once we looked at all the scheduling, we decided August would be better.

On August 9 we were married in the Louisville, KY temple of the Church of Jesus Christ of Latter-Day Saints. We have had an amazing 6 1/2 years. I can easily say that marriage is the hardest thing I've ever had to do in my life. We have had some incredible lows that I never would have predicted or expected, but also the most fantastic highs that were better that anything I could have imagined. I think I've decided that our lives are sort of like a cup that is sometimes really full or really empty. When we get married, and again with each child, our cup grows a little bigger...so that when it is empty it is truly empty and you feel it so much more than you would a smaller cup...but when it is full you have a greater joy than you ever could have known alone.

I am so grateful for my husband. He makes sacrifice after sacrifice for us, and makes me smile every day. He is a perfect father to our little boy, and is a great example to me. It is so amazing to me how well he complements me. I knew I liked him on that day back in October so many years ago, but I don't think I knew myself well enough then to even understand fully just how much he is exactly what I need. I am so grateful for a Heavenly Father who knew me well enough to place someone in my path like him and I am thrilled to be able to spend forever learning just how much fuller our cup can get.

The Progression

2010-01-24T17:18:00.003-05:00

Adam and I have the same issue that so many couples have...where he hits the pillow and is asleep two minutes later (not an exaggeration) and I take forever falling asleep. Inevitably as I am trying to convince myself to sleep, my mind starts to drift to both our hope for the adoption and C.
I feel so much more in control of my life that I did a year or two ago. C's doctors are all settled and we have regular appointments. For the most part, I know who to call for what he needs...or at least who to call to tell us where to look. But the part I still struggle with each night before I fall asleep is the part I can't control--the progression.
When C was diagnosed, he still stood and cruised along the furniture. I knew he had stopped walking out into the room but, knowing so little about SMA at the time, I thought maybe we could do intense physical therapy or maybe I could work with him a ton every day and he would be strong again and walking in no time. We have several friends and family members with children with different diseases and syndromes, and so many of them had made great leaps and bound over what their doctors thought they would physically accomplish...and I thought "My son can certainly do that too!"
And then, I learned about just was SMA was....A "progressive" disease. In January it will be two years since his diagnosis, and not only does he no longer stand independently, but he has recently stopped crawling. He has lost a ton of arm strength and falls over easily from a sitting position. The disease is such that it only gets worse--and you might be able to maintain for awhile but it is never getting better.
This is a fact that I fully understand and accept, but I won't say that personally that's not hard for me. I am a problem-solver and a fixer, and to give me a problem that can never be solved that involves one of the people I love most in this entire world is probably the greatest trial I will ever have. So at night when I'm trying desperately to go to sleep, I start thinking back about my day and wondering if I did all I could for C today and if there is anything I am forgetting. And I start to worry about his future and what strength he will lose next and how we can best help him. I never want to think or feel that things progressed with his disease and there was something I could have done to stop it, or that I didn't provide him with every opportunity. Even typing that now seems silly, because of course it is the disease and not me...but the thoughts still go through my head. And then, inevitably, I convince myself to stop thinking about it all and go to sleep because there is nothing that can be done about it right now.
So then the other day, I was eating a Dove chocolate (cause they're awesome) and there was this little quote inside, "Do not pursue the past. Do not lose yourself in the future. The past no longer is. The future has not yet come." And after a brief moment passed where I wondered if God made chocolate, I was thankful to Dove for giving me just what I needed to hear. And I started thinking about that word "progression." Back in History class the word always seemed to have a much more positive connotation and the teacher was always using it to describe the invention of the printing press or the railroad spanning the country. So maybe I was thinking about it all wrong. Maybe if C's muscles pull off some backward progression--well that's their loss. You can go back to thinking the world is flat, but it won't do you much good. But my son can still have an amazing and overwhelming amount of positive progression in his life. He is very intelligent and compassionate, and I know he will accomplish much. And someday soon our family too will progress, and C will have a new brother or sister we will love just as much who will be a shining example to him and a best friend.

So today I choose to embrace progression and be thankful for it, so that I might teach my children might find happiness in each day, and the great amount of happiness that is to come. And maybe eating a few extra chocolates isn't such a bad idea, either.

Reindeer Food

2010-01-24T16:45:00.004-05:00

As I am sure people get tired of the same old Christmas posts, I thought I would just put the unique things about this Christmas. First of all, ever since Jenna (my sister) was little, she always made "reindeer food" to sprinkle on the lawn outside for Santa's reindeer on Christmas Eve. This year, since we are staying at my parents' house for a few months while we find a new house, C got to join in the fun.

Needless to say, he loved it. And we all had a good time sprinkling it outside on the lawn...even though it was raining and Adam accidentally punched me in the head with an aggressive toss. (Santa took pity on him and still gave him presents, but he is definitely on the "check twice" list for next year.)

The second unique thing was that my mom, Jenna, and I all got aprons for Christmas. Jenna and I got cute pink, black and white polka-dotted ones with our initials, and Jenna (for her first sewing project) made a beautiful new one for our mom. Alyssa did not get an apron because, well, Alyssa pretty much owns every cute and fun thing (it's true--check out her new condo) and already has a super cute apron.

The third unique thing was that after weeks and weeks of tormenting each other, Adam and Maisy (my parents' cat) finally made friends. Okay, well I guess that's not really true...they do chase each other around a lot, but Adam gives the cat more treats then all the rest of us combined.

And finally, we very sadly forgot our camera when we went to Adam's parents' house for Christmas dinner. What was unique about our Christmas there? Hmmm...oh I know. I was passing out presents to everyone in a room full of about 18 people, and when everyone but Adam's sister, Beth, was absorbed in opening gifts I started to do ballet moves behind the Christmas tree. Not that I know ballet, but it was just hilarious that I was standing in the middle of the room and no one was noticing (except Beth who I wanted to laugh). That was slightly embarrassing, but said in keeping with the theme.

There were many other unique things about this Christmas, but as usual it was a wonderful few days and a perfect celebration of the birth of our Savior. And C is already making a list for next year. Why just yesterday he saw a commercial for a hair straightener on TV and told me I needed to put that on my Christmas list. I wonder what he is really trying to say.

Girls Weekend!!!

2010-01-01T21:11:00.007-05:00

In December, my good friend, Erin, was about 8 months pregnant with her first baby, so our other friend, Lynnie, and I both flew down to Florida for her baby shower...without our kids! (I'm sure both Lynnie and Erin have appeared on the blog at some other point...we were all roommates at BYU.) Now don't get me wrong...Lynnie and I both love our children without end, but every once in awhile you need a little girl time. C had a great time at home with Dad and Gram, so I didn't feel too guilty.

The weather was absolutely gorgeous!! The day we flew in it was in the high 60s, and every other day it was right at 79/80 degrees. Very, very nice considering I left 30 degree weather and I love me some flip flops. We got pedicures, went out to some scrumptious restaurants, and shopped and shopped. And Lynnie and I made some new friends at Erin's shower! And most importantly, we talked and talked and talked. There are few people I enjoy talking to more in this world than those girls. It was just what I needed to try to make it through another year.

But...by the time I was flying home I honestly couldn't wait to see my boys. Families cause this awful catch-22...sometimes you can't wait to get time away, but as soon as your gone you miss them desperately.

The Dinosaurs are Dead

2009-12-08T14:45:00.003-05:00

Yesterday, I had a little conversation with C that went something like this:

C: I had a dream about dinosaurs. Do you bemember dinosaurs? They were in my room.
Me: Do you know that there aren't any dinosaurs anymore? They lived a long, long time ago, but then they all died and all we have now is their bones. We can see pictures people drew of them, but we can't go to any zoo anywhere and see any.
C: The dinosaurs are dead?
Me: Uh-huh.
C: Did they go to live with Jesus?
Me: Uh....Uh-huh.
C: And Nanny? (Adam's grandmother who passed away about a year and a half ago)
Me: Uh....Yes, the dinosaurs live with Jesus and Nanny.
C: And they're all dead?
Me: Yes.
C: [long pause]........Well....then we better put their food in the fridge.

Really, I don't know what we did for entertainment before we decided to have kids.

DTR

2009-11-28T22:40:00.003-05:00

Wow. Been awhile since we posted. I thought that while we were living with my parents for a few months we'd have more time, but it seems to be just the opposite. We had a wonderful Halloween (and I'll post a few pics later when I'm on the right computer) and a really fun Thanksgiving.

I think C is somewhat adjusted to living here but he seems to have decided to be mad at my mom instead of wanting all her attention. I think it is because she seems a little more empowered to handle some discipline, and he doesn't really care for that from her. My relationship with my mother is pretty much the same, only changing in the ways I would expect.

But it really has brought to mind this idea of an evolving relationship between a mother and a child. With C and I, he is only three years old and already our relationship had changed dramatically. Now, he wants information from me mostly...for instance he wanted to know the other day where the animals put their food if Baby Jesus was in their manger. I want to do as much as I can to spark his creativity, and he has a lot more personal needs than a typical child his age. But I also need to do some things for me sometimes, and just have "quiet" time.

So where is the balance? I see moms with new babies and moms with all grown-up kids who struggle with this same issue...and what do you do? Oprah would tell you that you need to have your "me" time and I think Dr. Phil would tell you to explore all your personal feelings and needs so as not to keep them bottled up, but I don't know that I agree with either one of those. I do think you are a better mom if you take time for yourself. Even Jesus Christ, the perfect example, took time away from his disciples sometimes to meditate and be on his own.

But I do believe there is a line, and sometimes I know I see people that are crossing it. I think that if you choose yourself and your feelings once, that's okay. But if that is a frequent choice and is damaging to your children, or more importantly your relationship with your children, then I think it becomes inappropriate.

My problem is that it is always easier to look at and judge others than it is to see those things in yourself. So I spend my days wondering if I'm doing enough for him, or not doing enough for me...and I guess in the end if I wonder enough both ways maybe it means that I'm really finding some undefinable middle ground. Guess I'll just hope for the best.

Cupcakes are the Coolest (and so is Aunt Jess)

2009-10-12T06:12:00.011-04:00

Adam's sister, Jess, has a degree in culinary arts and is amazingly talented when it comes to baking (and lots of other things, too!). I thought I'd show off a bit of her work...at least some of the cupcake part. You really can't help but take a picture sometimes.

These are the cupcakes she made for C's third birthday.

Sooooooo cute!!! Made with Oreos, Junior Mints (my fav) and Runts bananas.

Can't remember what occasion these were for...but the chocolate butterflies were so beautiful it seemed sin to eat them.

And this was for my nephews' birthdays. The spaghetti and meatballs is spaghetti-colored icing piped on, with Ferrero Rocher chocolates coated in strawberry jam. I didn't get to try the pizza cake, but the pepperonis were fruit roll-ups.

And this doesn't even include all the gorgeously decorated cakes she's made. I could seriously make blog just about her creations. We've definitely been spoiled, and miss her family a ton since they recently moved to New York...and not just because of the cakes. Luckily we get to see them again soon!!

C's 3rd Birthday

2009-10-12T05:37:00.002-04:00

Wow...it's been over a month and I'm just now getting around to posting about C's birthday. I know I said I wouldn't be posting again until we move, but I woke up at 5am and couldn't get back to sleep and I'm sure not packing any boxes right now.

Connor is one of those very blessed kids that gets three birthdays...as you'll see. He really got into his birthday this year, much more than he has any other year so far. (And actually he thinks another one should be coming soon and asks me about it several times a week.) I think I now have him convinced that Christmas will be really cool, too, because he keeps suggesting we should write a letter to Santa. Unfortunately, his letter right now would include a pickup truck he can drive so we're waiting it out to see if that phase passes. The other day we had his first "see the commercial and want the toy" moment...and I know there is only more yet to come.

This is his birthday with our DeLuca family. Elsie's birthday was just about a month after C's so she was pretty into it, too. She is so gorgeous you can hardly help from taking a picture.

This is at his Peterson family's house. My mom made some "Lightning A-queen pupcakes" for him. (A really cool cupcake post is coming soon....) He is just starting to get into Star Wars, and figuring out what is funny. When we asked him how old he was now, he said,"I'm a Jedi!". Awesome.
And this is from his birthday at home. (His last one at this house...sniff, sniff.)

While I will be the first to admit he gets a little spoiled sometimes, I would also be the first to tell you that he really has no idea about it. All he knows is that there a lots of people around him who love him a bunch. And we wouldn't have it any other way. Happy Birthday to my sweet baby boy, who's not a baby anymore.

Moving and Missing

2009-10-08T14:27:00.003-04:00

Right now I'm sitting in our office, which is looking very bare. The closet is almost completely empty, and there is a tall empty bookcase sitting next to a very full box in need of taping. I suppose I should close it right now and get on to more packing, but I'm taking a break cause I deserve it. But I am sure this will probably be our last post until we get settled again.

It seems like we've been waiting forever to move...one offer/half offer after another has really led us to feel like it would never happen...and yet suddenly it's here. We'll be out of this house in a week. I feel sort of like I did when I was eight months pregnant...like I've been looking forward to something for so long that I hardly remember things not being the way they are now, but perched on the edge of the big change and suddenly wondering if I'm really ready.

We were in our little apartment when we first got married for about a year, but the other five + years of our marriage were spent here. Adam got his first real job here, we were pregnant here, we brought C home from the hospital to this house, and I remember many of the ups and downs of the last few years by where I was in the house when whatever it was happened. I feel like I should go through the house and take pictures of every room--just to remember it as it is, but I know I'd never really look at them.

And really, it's not just the house, but the whole community. I will admit...I won't miss the crazy teenagers running up and down the road, or the weird people that frequent the Shelbyville Walmart, or trying to make it down US 60 during Shelbyville's rush hour which is not caused by traffic but instead by people who all drive 40mph as their max speed. But we will miss the family five minutes away, the librarian and the awesome library program, our crazy "conspiracy theory" neighbor, the neighbor who thinks cigarettes are a fifth food group, the tractor stores and train overpass we go by on the way to just about anywhere that totally make C's day, the beautiful park with walking paths, a pool, a gym, and camping soooo close, and all the wonderful people at our church that have enriched our lives in countless ways.

Wow, if I'm not careful I might really talk my way out of this. But I guess when I really think it through I know that what makes all of this so great is people, not buildings. As my mom says, "People are more important than things." We will dearly miss all those who have influenced our lives for good over these past five years. And even if we have to leave this house behind, you can be sure we'll always keep those memories in our hearts.

What Dreams May Come

2009-09-21T09:52:00.002-04:00

I should be doing MANY other things right now, but I thought I'd post this little bit to get it out of my head. The night before last, C woke up around 3 am and was talking in his bed. (He often wakes up at 5:30 am and is awake for the day, but 3 am was a little early.) I couldn't tell what he was saying in the monitor, so I went into his room to ask what was wrong. He said, "Did we flush my green tanker truck down the toilet?" That was it--bad dream. He's had bad dreams before, but never really had enough language to actually describe it. I assured him it was fine and we should go back to bed. He said he needed to go to the bathroom, so I took him in, and he repeatedly questioned me about the tanker truck, and was I the one who flushed him down the toilet. I tried to assure him his truck was still there and explain exactly what a dream was. He got quieter and went back to sleep, but never really seemed satisfied.
Later that day when we were at church, C leans over to me and whispers, "Are we not going to flush our trucks down the church potty?" While I tried really hard not to laugh, I told him we had no trucks with us and that I would never do that.
After sacrament meeting, I took him to the bathroom. While sitting on the toilet, he points to an almost-gone zit on my face and says, "Is that your owwie?" I said it was but it was almost gone. And he said,"Did you get that when you flushed my trucks down the toilet?" Poor boy. Usually I am slightly annoyed when he points out my occasional zits, but this time I just couldn't help but empathize.
Unfortunately, as adults, we are not immune to bad dreams. I was reading a magazine article about dreams the other day, and they perfectly described my reoccurring adult nightmare--I realize I am late for a final exam for a class I signed up for but forgot to ever attend. I did feel a little relieved that I am not alone in dreaming this because as far as adult nightmares go, this is apparently very popular.
The magazine says this indicates that I am a person to whom achievement is important and I have anxiety in my life....well, duh. I think any woman at my life stage is entitled to a bit of anxiety. After all, it certainly is possible that my son really flushed a toy down the toilet and it wasn't a bad dream at all and I think a little bit of anxiety about that is perfectly normal. But I do also believe our dreams reveal a little about us that we may not have known.
Adam sometimes teases me about all the crazy dreams I have, but sometimes I wonder just what it's all for. One day, I was painting a bookcase white, and I was standing over it moving the paintbrush up and down, and I realized I that had seen this exact picture before. But it was more than dejavu--I remembered where I had seen it before...it was in a dream I had weeks earlier before I ever decided to paint it.
Now please don't think I have any belief in psychic abilities because you won't convince me that painting a bookcase had any significance to anyone--even me. But I do know there are all kinds of things about our brains that science doesn't yet understand. It truly fascinates me, and sometimes I wonder if in another life I might be a neuroscientist and figure it all out.
Maybe I'll dream about that tonight.

The "Transition"

2009-09-03T16:40:00.003-04:00

Since even before C's diagnosis, we have been a part of the First Steps program. It is our state's Early Childhood Intervention program, and provided us with PT and OT at home. I don't think I can explain in words how grateful I am for this program. To have trained professionals come to my home on a weekly basis to check on him, work with us, and assess his and our needs has been one of our greatest blessings. I feel like I am pretty observant and educated, and know my child very well, but they consistently noticed things that I did not. It has been so nice to be able to discuss all these life changes we have to make in the comfort of our own home, and I really truly feel like we have made some great friends.
But then C turned three. And at three, the government steps in and pretty much dumps you out on your own. We could put C in the special needs preschool at the local elementary school, but I'm not too thrilled with them, so we're keeping him at home one more year. If we did send him there, we would have had "transition" meetings and "arc" meetings and all sorts of meeting with the school system, but since we decided to wait a year on preschool we are just on our own.
I can say without shame there have been several times I have cried about this transition. First Steps was there to pretty much anticipate our needs and help us find whatever services and equipment were out there. And now we have to go it alone. I have spent the last month or two scrambling to find recommended therapists, who had space for C, and take our insurance. We also have to give back a lot of the equipment we've borrowed, so we're trying to get that replaced as well through insurance. I mean, some days I really can't see how my life was ever busy before I had all this to do.
And today we had our first visit with the new OT...and I am thrilled!!! It's about a 35 minute drive, but they have great equipment (including a disco ball--not sure why they need that, but it's awesome) and C actually gets to see a man now. I think it is going to be really good for him. The guy does all the same stuff as the other OTs, but from a man's perspective. Hard to explain, but very cool.
***And just as a side note, while we were at the new OT's office this guy came in who is a wheelchair rep we had originally contacted to try to get C the Permobil power chair we wanted. He told us that our insurance just wouldn't pay for that, and we had to get this other chair instead--that's all he showed us, one chair!! (That's like shopping for an SUV, and somebody showing you a Ford Escape and saying, "Yup, that's all there is.") So I see him walk in, and I look away but out of the corner of my eye I see him recognize me, and then look at C's wheelchair and just stare. I'm sure he noticed the big sticker with his competitor's name and number on the back of the chair as well. And I wanted to say, "Yeah, see that? That's cause I don't settle when it comes to my son!"...but instead I just sat there and for one brief moment felt like the best mom ever.***

Again with the Ramp

2009-08-20T08:13:00.002-04:00

So we had another little "wheelchair ramp" issue...but this time was much worse. Our van's AC was being repaired, and we were spending the day at my mother's house waiting for it to be fixed. I have been sick for about a week now, so when C flat-out refused to take a nap my mom graciously agreed to watch him so I could lay down for a few minutes.
So here's the really sad part...as I was trying to drift off to sleep, I kept thinking over and over that the wheelchair was in the back of my mom's van and she was going to have to get it out of there before she picked up her carpool. I kept thinking I should get up and do something about it, but in my half asleep state I never quite convinced my body to do it. Just before I fell asleep I remember thinking I'll help her as soon as I wake up...she won't leave for carpool before she wakes me up.
Yup, wrong about that one. When I woke up, I immediately remembered the wheelchair, and went downstairs to get started. I walked toward the kitchen and my mom was standing in the doorway looking at me. She said, "I had a little accident." (And I'm not really convinced this wasn't all my fault for not listening to the little voice prompting me to go downstairs.)
She had tried to get the chair out of the van herself, which she has done before several times, only this time the ramp slipped and the ramp, with the chair on it, landed on her foot. She doesn't remember, nor can any of us figure out, just how that ramp got off her foot. But she was doing it right before she needed to leave for carpool, so instead of waking me up, she just put a towel down on the floor of her van to catch the blood, and took off. She claims she thought it would be too hard to climb the stairs, but I fully blame it on her frequently-seen "I can do anything even though I am injured" attitude.
After convincing my mom she needed to go to the Urgent Care Center and didn't need to drive herself this time, we jumped in the car to head out. Just then C's PT pulled up to the house to do his therapy, so we left him, the PT, and my sister there together, and headed out once more.
Several stitches, a broken toe, and one ugly-looking walking boot later, mom was patched up good as new. Okay, not good as new, not at all. But she did have Vicodin, so that helps.
And would you believe that after all this, the next day she insisted on running around canning tomatoes from her garden? I'm not sure if she's crazy or amazing, but I supposed I really lean toward the latter. What I do know for sure is that a big factor in all this was my mom's unfailing desire to help me and my family in whatever way she can--a blessing that I am grateful for a thousand times over.

An Early Snow

2009-08-14T14:01:00.002-04:00

What do you mean it's not a good idea to let your kid control the speed on the mixer while you're adding the flour to the zucchini bread batter?

Wheelchair Racing at the Zoo

2009-08-13T08:40:00.007-04:00

Last Friday we decided to venture out to the zoo and give C some space to roam with the new chair. We didn't quite get to see as many animals as we wanted because he was too busy driving. He's only driven it four or five times, and he is already twice as good as he was at the beginning. He is really learning fast. On this trip, he figured out the "speed" button, that adjusts the speed up and down at four different levels. On the slowest speed, I have to walk slowly beside him, but at the fastest speed I have to do a super fast walk/very slow jog to keep up with him. He would say, "Now I'm going to go fast", and hit the button and take off. And only once did I get my flip-flop ran over...when he got a little distracted and didn't leave enough space for me to walk beside him.

He did stop and take one break...to ride the carousel with his Daddy.

I am so excited to have this chair. He LOVES driving it and finally having his independence. We got the EOB from our insurance yesterday...they billed $37,000 for the thing and all its parts. Granted, that is the billed amount and what insurance has actually contracted to pay them will be thousands less, but still it made me very, very grateful for the blessing of having that Medicaid program as his secondary insurance because of his diagnosis. I am also so, so thankful for a pediatrician who pushed us to apply for it when we did even though we really didn't see the need back then. Much of this stuff we have to do is really hard to face, but there are awesome little blessings all along the way.

Faith for No Reason

2009-08-12T11:01:00.003-04:00

Well, once again, it looks like we might move. About this time last year we put our house on the market, and it has been up and down ever since. For the first month or two, no one looked. I mean no one. We even had an open house and no one came. Little did we know we were moving into a recession and a horrible slump in the housing market.
Then things randomly started to pick up. We had people looking almost every week until the holidays. They all said our house was "in really good condition" or "cute," but no one wanted to buy. Then there was a slump for the holidays, and then things picked up again. We had about three almost offers, but something happened every time.
And then finally--it happened. We had a genuine negotiated and signed offer with a woman who also had a signed contract on her house. We started packing boxes, changing addresses, and saying goodbye...and then the sale on her house fell through. (big sigh)
And now, we just got the news that after relisting her house, she once again has a negotiated and signed offer on her house. Now we just have to wait for the inspection and appraisal on her house to find out if it's a go. (The appraisal and home inspection she did on our house is still valid.)
So, when I first got the news, I was thrilled!! We never thought she'd get another offer so soon, though our real estate agent seemed to have so much hope. But then things slowly went downhill (emotion-wise) as I remembered all we'd been through and how we 'd had failure after failure for a year. Every keeps telling us, "It just takes one!" but after a year of "ones" you start to wonder just how many there are yet to come.
And now, though I am not as ecstatic as I first was upon hearing the news, I can honestly say I am still hopeful. At least in my heart. My head, on the other hand, I think wants to smack my heart in the face and tell it to wake up, but my heart still has this overwhelming faith that it might just workout this time. So hopefully in about two weeks we'll have a good idea what the truth of it is, and if it doesn't work out...well I guess we won't be any worse off than we are now!

The Wheelchair Accident

2009-08-06T07:41:00.002-04:00

In reading this title, I'm sure your first thoughts are that my almost three year-old (who just got a new power wheelchair) had a crash...that is really not all too unexpected as he learns to drive. Nope, not the three year-old...it was me who had the crash.
Yesterday my mom and I took the chair to Sams Club with the realization that a ridiculously large warehouse with wide aisles was pretty much the perfect training ground. He did an amazing job. I walked along next to him, ready to grab his hand off the joystick at any time, and I think I really only had to do it once when he overshot a stopping point. I've gotten to a point where I really don't care if people stare at him in his chair...but really I'm not sure why. Maybe because I'm just so dang excited for him to finally have a way to independently move around wherever he wants to go. Or maybe because in my head I assume they are thinking how awesome it is that a two year-old can drive that thing so well...cause it is. Either way, I loved it and I'm very tempted to take him back there every day.
The accident actually occurred when we arrived back at my mother's house. I put the ridiculously heavy metal ramp on the lip at the edge of the back van door, and started to back the wheelchair down it. Well, apparently the ramp wasn't in quite as stable as a position as I thought because the thing slid backwards, fell to the ground, and our $24000, 250 lb wheelchair flipped itself backward and went down right along with it. I will admit that at this point a word escaped my lips that I never say...mostly because I thought Jenna, who was standing on the other side of the ramp, was caught underneath. But she was fine. The ramp, however, was not. These two loops on the back of the chair were apparently made of stronger metal than the ramp, and they each punched a hole in it. This also made it almost impossible to tip the chair back over--because it was now lodged in the ramp.
But, after a lot of wiggling and pushing, and after the zipper on the chair's headrest punch a small hole in my forehead (still not sure how I did that) we got the thing upright and it was working just fine. My mom took a sledgehammer to the holes in the ramp and all in all, we escaped with just a few scars to remember the incident by.
What I dreaded was telling Adam on the way home. How are you supposed to react to, "Hey remember that super expensive chair we have? Yeah, I dumped it on the ground and punched some holes in the ramp, too." After hearing about it, he was quiet for a minute (as my heart pounded) and then said, "Well really I'm just scared." So I started to ramble something about how I knew how important the stuff was and promise to be so much more careful with it all in the future, and he said, "No, for you guys. I don't want you to get hurt." And while my reaction should have been to say, "Well anyone who thinks I can handle all this equipment on my own is absolutely crazy"...instead I was just thinking how much I love my husband and how grateful I am to be married to a man who fully understands that people are more important than things.
We'll hope for a better experience at the zoo on Friday...and maybe I'll just let Adam use the ramp this time.

August is SMA Awareness Month

2009-08-04T16:21:00.002-04:00

This month is national SMA Awareness Month. This is a little video about the search for a cure.

http://www.youtube.com/watch?v=DncMkpqn_xo

A Mother's Saving Grace - A Picture

2009-07-30T21:08:00.005-04:00

A wise woman (Lynnie) once told me when your kids make a big mess, sometimes all you can do is take a picture.

We have been potty training for quite a few months now. Not my favorite thing. And our bathroom experiences usually ended up like this...with C doing anything on the potty that he could think of except for what he was there for. This, unfortunately, was almost a full roll of Gram's toilet paper. I was shocked he could actually unroll it that fast - I was only out of the door for just a few seconds. And he was so proud of how he "folded" it all for me that I didn't have the heart to be upset.

I was a little worried about the whole process since C isn't exactly able to run in to the potty himself, but since I have found pretty much no two year-olds do that...it really didn't end up making much difference. Months and months later, though I am almost scared to say it aloud, I think we are just about done. C has been wearing the "big boy" underwear for a several days now with just one accident. I want to be excited about all the money we are going to save on diapers, but he finishes just shy of his third birthday--the date the state would start giving them to us for free. Oh well--what can you do.

Making Jam

2009-07-07T15:15:00.001-04:00

Here's few pictures of what we found to pass the time on a rainy summer day.

http://www.facebook.com/album.php?aid=27531&id=1375444343&l=dab6e99201

Changes of Season

2009-07-07T13:50:00.004-04:00

Lately, at the end of every day, I feel so exhausted and yet I have done nothing. I realized the other day it is because so much has happened to us lately that I haven't had time to mentally process it all...so even if my legs aren't moving much, my mind is just running and running.
At the end of June, we had the opportunity to attend the worldwide FSMA Conference, which was so conveniently located in Cincinnati this year. Adam's mom came with us a well, and as always we are forever grateful for the many ways she shows her love and support to us. The week before we left, I finally told Adam that I was truly scared to go. Not because I would learn anything shockingly new, but because I wasn't sure I could handle being immersed in it all for days at a time. I guess that doesn't make sense much since we live it every day, but Connor is really just a typical almost-three year-old, except that he can't walk. So sometimes it is easy to forget all that has happened, and some of the different possibilities for the future.
After experiencing the conference, I feel it was such a blessing that we were able to go. We did learn a lot about some things that might come up in the future, so that we are much more comfortable with them now. And it was so...well almost relaxing and empowering at the same time...to be with a group of people who all worried about the same things we do. I will carry that feeling with me wherever I go.
I think what impressed me most was the teen and adult panels. They talked about their experiences and what had worked for them and hadn't. It was so amazing to see all that just this small group had accomplished. Between them all they had gone hours away from home for college, swam competitively, given birth to a healthy baby, traveled to Costa Rica, and so much more. They were so open and honest, and as a parent raising a child with this challenge it was so refreshing to hear--I just soaked it all up.
What still stays with me is the words of one well-spoken college-age young woman. A parent asked her something about talking to our children about what they can and can't do, and her comment was that we should never discourage our children from anything, because if we look hard enough and work hard enough, there is a way.
I think that was so what I needed to hear. I am so grateful for the example of her unnamed parent who worked so hard to do just that for her, so I could see just how happy it made her...because I CAN do that too.
We also heard back that Connor's wheelchair was finally approved!!!!!!!!! We saw a chair just like it at the conference, and we are so excited for it do be delivered so C can start learning to drive.
And...just recently we got an offer on our house (finally!!) and if all goes well will probably be moving by the end of this month. I just bought packing tape and sharpies, but that's as far as I've gone. I'm not sure I'm really a rush-around-at-the-last-minute kind of girl, so really I think my hesitancy to start anything stems from the fact that we have spent five of our six years together as a married couple in this home. As a person, as a couple and as a family we have all changed so, so much from when we first got here. We came here as a couple still in school and barely past the first year of married--still pretty much newlyweds. And we leave with a true sense of who we are as a happy family, though much different than what we had pictured. Shelbyville is our home, and as much as I know we need this move my heart is breaking to leave it.
As crazy as all this has been, we still feel enormously blessed that our Father in Heaven has answered our prayers in so many ways. We know that it is in following His timeline that we find the greatest happiness...and though some of this has been and will be hard, we know in the end it will all be worth it.

Trading Places

2009-06-18T14:08:00.002-04:00

We've gotten a good laugh lately over all the people we know and love from far away that seem to be passing by Louisville lately, and some of those we love from here seem to be trading places with them. I guess summer is just a busy travel time.
Here's how it's been: my mother and sister flew to Washington state about a week ago. Two of my cousins from Washington are driving from there to Florida and Pittsburgh together and they'll be coming by Louisville twice during the drive. When my mom and sister get back from the west, another cousin, also from the west, will fly out here to spend a few weeks with them. And we are leaving tomorrow to go not very far away--to Cincinnati--for the SMA Conference. We'll be staying with my old roommate's parents there, though that roommate now lives in Florida. Then a few days after we get back, C and I will travel to Virginia to meet up with that roommate from Florida and another old roommate to spend a week together.
You know...every once in awhile my mind wanders back to the "olden" days, and I wonder what someone from the past would think of traveling across the country so much. I can picture in my head being like good ol' Bill & Ted, and climbing in my phone booth to go back in time and pick up Napoleon or Abe Lincoln, or maybe just my great, great, great grandmother. Wouldn't it be exciting to explain, "Look what we can do now" and "That's not a problem any more because we have this." I'm sure they would be shocked to see that I can drive the 25 miles into Louisville to do some morning shopping and be back home in time for naptime, and even more astounded at how far we choose to travel for a quick vacation.
I am sure they would be amazed with some of the incredible obstacles we face now that they never dreamed of. But you know, I think the same could be said for us when we think about their time. I can't help feeling grateful to God that he put me right where I am. I may have a lot of challenges in my life, but one thing is for sure--I would have been a horrible pioneer.

In My Pretty Garden

2009-05-21T16:00:00.003-04:00

When I was a child, and even into high school, I would see my mother reading a gardening magazine or book quite often. She knows the names of so many flowers, and I remember quite a few times when she would tell me the name of some wildflower we'd pass on the side of the road. I always wondered how she could possibly be so interested in flowers that she could spend so much of her time learning about them. But because it seemed to make her so happy, I passed it off as some sort of specialized hobby and accepted it for what it was.

Now I know. I know that planting a flower makes you feel like you're doing something to make your home more beautiful, and a happier place. And that somewhere deep inside you feel that if planting a flower makes your family happy, then doing it makes you happy, too.

And so I garden. Not like my mother does, but I do my little bit that is enough to make me feel content that I've done something good as I walk through our yard.I do not yet have a daughter of my own, but I have a son who loves to sit by me and play while I work...because of course he would never pass up an opportunity to dig in the dirt. We got him his own kid garden tools and "boy" garden gloves (they are blue with worms on them), and he has been asking every day if it is a "warmer" day so we can garden. And though I know he would just as soon rip a flower to pieces as plant it, I am very grateful for this season where he and I can share something that makes us both smile.

Tricycle Triumph - A Very Good Day

2009-05-14T14:47:00.002-04:00

Tuesday, I was trying to clean up my house a bit, when I got a call from our real estate agent. I said, "Hello?" and she said, "Is there someone outside your house?" At first I was a little creeped out like it was a random warning about some weird guy hanging out in my front yard, but I quickly realized who it was and (with a big sigh) that I was probably going to have to hurry up and finish cleaning everything because someone wanted to see the house right away. I was right. We made an appointment for them to come back in an hour, and I flew threw the house trying to finish all the cleaning I could while encouraging Connor to scarf down his remaining chicken nuggets and applesauce.

After some last-minute frantic vacuuming, we bounded down the front steps and I told C we were going for a ride on his tricycle. He LOVES his trike. If you look back in the blog to last summer somewhere, I think there's a picture. We got it at Sam's Club, and it is a Lightning McQueen trike, which means a lot more to him this year now that he's so into the movie. It has one of those "parent push" handles in the back, and you can either engage or disengage the his front pedals.

So all last year, I left the pedals disengaged and let him just put his feet on the seperate footrest bar. But he's a little big to reach that properly now, so I just strapped his flip flops under the reals pedals to keep his feet on. Then, just on a whim, I engaged the front pedal figuring whatever push he might give every once in awhile would be good exercise.

I sat him on the trike on back of the driveway, and bent down to pick up my purse, and when I turned around HE WAS PEDALING!! I couldn't believe it!! I started searching the ground to see if there was some mysterious hill in our driveway I never noticed before, and though it does barely angle down toward the street, C was really keeping it going all on his own!!

So we went to for big long walk up and down our street. The street goes uphill a bit, and he needed some pushing going up...and actually I think just about any kid his age would. But on the downhill, he kept it going by himself for the most part, and kept turning around to check on me, saying "Mommy let go!" He was so excited to be independent. But probably not half as excited as I was. And, as I'm sure all our neighbors already think I'm crazy since the fire truck "incident", I really didn't mind walking up and down the road with a few tears on my face.

Everybody Has/Needs a Cell Phone

2009-05-07T14:51:00.006-04:00

A few days ago, my mother-in-law, sister-in-law, and our new little niece stopped by to visit. Connor has quickly caught on to the fact that most everyone has a cell phone these days. So his Aunt Jess wasn't there very long before he was asking to see her cell phone. He remember from the last time he saw her that there was a picture of her dog on the phone, and he was dying to see it. Then he said he needed to call somebody, so Jess dialed her husband's number and Connor took it from there.

He cracked us up. I was very impressed with how important he seemed to think it was to share the phone with the baby. Lucky for her, she slept through the whole thing. The frog was a toy he found in his toy closet (with some guidance) because he insisted she needed one. I'm so excited to see him as a big brother.

The Goodness of Grandparents

2009-04-21T13:06:00.003-04:00

As we are pulling together the photos for the adoption, I just cannot get over some of these cute pics with the grandparents. Adam and I feel truly blessed to have the parents we do. It is a hard balance to find--to let your children be adults and manage their own lives, but still be there and willing to lend help when needed. And it seems like we have been through a lot lately, and they have all four been right there to help. I cannot even imagine the length of the list of all the ways they have blessed our lives.

This is Dennis and Kay's cool swingset they put up in their backyard for the grandkids. This is one of my very favorite pictures, because it shows just how much their grandchildren make them happy.

This is my dad and Connor in the brand new sandbox they got him for Easter to use when he visits their house. They do love Connor very much, but I think they also consider it an investment in grandkids yet to come.

Both of our sets of parents continually bless us with advice, their time, and sometimes a little extra something when life has put is in a tight spot. When we first got married, Adam and I joked that shopped for groceries at Kmart (or Kay's Mart, Adam's mom) and Sams Club (or San's Club--short for Sandy, my mom) because with our money so tight, our parents let us "shop" in their pantries to help out. And even now, we still to get groceries from both places occasionally.

We are so grateful for their love and that--come what may--they will always be behind us to give support if we need it.

The Letter

2009-04-20T16:22:00.002-04:00

I am having a little trouble. I am supposed to be working on our "Letter to the Birthparents" for the adoption, but I am having trouble. Not because I don't know what to say, but because there is so much to say. I guess I'm glad the birthparent is not here to talk to in person just yet until we can get our thoughts together in this letter, because I'd probably overwhelm them telling them all about how we're happy and excited, and Connor wants to be a big brother and asks when the baby is coming, and about our home and our awesome and supportive family, and the things that make us laugh and what's been hard for us.

I know we're not perfect parents, but we provide Connor with lots and lots of love and support, and will of course do the same for our other children. We are soooooooooo excited to add to our family, but finding the right words to convey that to someone else is just a little hard. I want this letter not to be too cheesy, but the truth....well the truth is cheesy. The truth is that the love of a parent for a child is one of the very strongest bonds there is...and therefore describing it is just going to sound a little cheesy I guess. I want the birthparents to have the opportunity to get to know us, and then they'd know! They'd know how much we will cherish their child and what an opportunity it is to have their baby become a part of our lives. But...I guess it's not really feasible for them to get to know every birth couple intimately. So, I guess we'll just do our best and know that the baby that is meant to come to our family will come...and we'll love them forever.

Okay, I'm ready to start again. Wanna get some progress made before Adam gets home to help.

And then the Fire Truck Came

2009-04-06T13:27:00.002-04:00

We've had a pretty bad week. The worst of the days, at least for me, was the day the fire truck came.

I had parked my van behind Adam's car, so when he left for work in the morning he moved my van out in front of our house. Since another car was parked there also, Adam blocked our mailbox just a little. Later on in the morning, I realized our mortgage needed to go out in the mail and the mailman had already gone down one side of the street. I grabbed my keys and told Connor (who was playing in his room) that I'd be back in a sec, and went to move the van back to the driveway and put the mortgage in the mailbox.

Just so you realize, I had gotten in late the night before so I didn't wash my face and had old makeup on. I definitely had not showered and had just pulled my crazy hair up with a hair band, and I threw on an old sweatshirt (without a bra) and just walked quickly out figuring I'd be back in about 30 seconds.

I was wrong. As I was walking out, I thought I'd just go ahead and lock the door. I knew I'd be just a sec, but I was going to be inside the van and there were some people outside. When I was done, I came back to the front door to unlock it, and realized I didn't have my house key. When I left on my trip, I put it in the diaper bag for my mother-in-law to use, and I never got it back out. I immediately knew there were no unlocked doors or windows, cause I'm pretty careful about that. I went over to C's bedroom window, and yelled through the window that I was stuck outside but I'd be back in a few minutes. He was okay for a bit, but then he started crying that he wanted me to pick him up, and I felt my panic level rise about 3 points.

Just then my neighbor walked outside and I went frantically running over to her begging for her cell phone. I called Adam and he said he'd be home as soon as he could. So then I went back to C's window to wait. I was so scared something would happen to him that I just wanted to keep him talking to me through the window. His window was about even with my mouth, and unfortunately some cat had decided to do his business in my flower bed just below the window so I was straddling that with my bare feet and trying to sound calm to C. Then I remembered a bucket on the side of the house that maybe I could stand on and avoid the you-know-what. So I ran around and got the bucket, forgetting that it had been outside all winter...and when I went to stand on it the bottom gave way and I fell through. Awesome.

So I started looking around for other options, and noticed my neighbor's woodpile. I grabbed the biggest log I could find...and somewhere in my distressed mind I thought my adrenaline would help me carry it or something. Nope. I almost fell over about three times on the way back to the window. I got up on the log and started trying to talk to C again, but this time all I got was total silence. The kid doesn't go anywhere fast, so I really started to freak out then. I didn't know what to do, so I just went back to the front porch and cried.

Just about then, as the old makeup was streaming down my cheeks, the mailman showed up. When I told her my disabled child was stuck in the house, she immediately called 911, and after telling me the police were on their way went on delivering mail. I went back to the porch, just in time to see Adam pull up. He rushed out of his car with his key and unlocked the door...and not 10 seconds later up pulled the fire truck.

Okay, so I have to say this part confused me greatly because I wasn't sure exactly what they had planned to do with the fire truck to help me out. Were they going to climb up the ladder and come in through the chimney? And because it is little Shelbyville, behind the fire truck came one of the fire station SUVs for backup. And I knew they were all thinking I was crazy because I obviously did not appear locked out. So I looked up at Adam, who was hugging both Connor and me, and said, "You gotta go out there and tell them you just got here. I am a mess and I can't go out there."

So Adam walked outside to talk to them...and just then C noticed the super cool fire truck parked in front of our house, and insisted on going to see it. I was so happy to have him back, I just wanted to do whatever would make him happy. So I walked him and me outside--crazy hair, makeup everywhere, bra-less and all--to see the fire truck. And wouldn't you know it, a guy from our church just happened to be driving the truck that day. Double awesome. I was hoping maybe I looked so crazy he wouldn't recognize me, but with Adam and C there I guess there could be no mistaking me.

So what's the good part of this? Well, I will tell you how impressed with my husband I was. I was sure he was going to be mad at me, but he didn't say a thing. He just hugged us, and then was sad when he had to leave us to go back to work because he was worried I was upset...just exactly the reaction I needed to feel a little better. And C was so excited about it all that for a few days he told every new person we ran into that, "The firemen helped mommy."

Adoption Update

2009-04-03T12:37:00.002-04:00

Our adoption worker helper person (what is his official title?) called us and said the Adoption Committee would be meeting on Monday, and we will find out if our home study is approved. I think we have everything in order and no reason to be denied, but for some reason I'm still nervous. If all goes well with that, then we just have to finish our website...and then we're ready to be chosen! It seems like this all has gone so fast...but I know there is still more to do. We are so excited to have a new member of our family!! Say a prayer for us!

Falling Apart and Coming Together

2009-03-24T14:28:00.003-04:00

My mom called at 8:30pm last night. I was hoping instead it was the real estate agent, calling to say one of the people who looked at our house on Saturday put in an offer (the same sad hope I have every time she calls), but no luck there. I greeted my mom with the usual, "How are you?" and her reply was, "I've been better." From her tone I knew it was not an emergency thing, but a sad thing, so I walked out to the living room with Adam and sat down on the couch.

She told me that my grandma, her mother, had passed away. My grandma was not a young grandma by any stretch...my mother is the eighth of my grandma's ten children and now a grandmother herself ...and my grandma had health problems too numerous to list. But it still came as a bit of a surprise, as we had no notice she was having any serious health issues.

My sisters, cousins and I have all expressed the same thing...that we have this strange mix of joy and sadness. We know that Grandma was prepared for death, and missed my grandpa, who died in an accident 15 years ago. I have no doubt that she is much happier now than she has been in a long time.

But for some reason, that perfect knowledge still couldn't hold back my tears. I have wandered around for most of the day in a haze. I forget what I'm about to do the instant after I decide to do it...I can't remember where I put anything...I keep forgetting what I am supposed to do and where I'm supposed to go. I am flying out to the funeral on Thursday, but I can't even begin to think about what to pack...especially since Connor will be staying home with his dad, and I actually don't have to pack for a kid. It's as if I can see the pieces of myself scattered about...and I know I'm all here but I just can't find the will to put myself back together just right now.

But I can tell you what I do know--family is coming. That side of my family has over 50 first cousins, and lots of them have kids of their own now as well. Many of them I haven't seen in years and years, and even though it is a sad reason for such a gathering, I am so excited to be there. I feel so, so blessed to have such a wonderful and supportive family who in times like these have the innate and automatic reaction to pull together and comfort each other. I know that they are exactly what I need right now. What a blessing it is to be born into families, so that we have the opportunity to know others well enough to help them along their way.

The Outage and the Full Moon

2009-03-20T13:38:00.003-04:00

I got special permission to tell this story, cause it the hardest I've laughed in quite some time.

A few nights ago, Adam and I were gearing up for the Big East Conference Championship (basketball, for those of you blessed with husbands less interested in sports) where our team, the Louisville Cardinals, would be playing for their first conference title since joining this conference. Just a few minutes before the game was supposed to start, our power suddenly blinked and then the entire house went dark.

Adam and I stared at each other in disbelief. We've lived in this house for about five years, and have yet to loose power--even through the windstorm of Ike and the ice storm a few months ago. We opened our front door, and walked out into the front yard under a perfectly clear sky. All our neighbors still had power, except for our neighbors in the house just to our left, who had also walked out into their front yard. We chatted and it was decided we would both call the power company in the hopes of getting a faster repair.

I think the guy at the power company must have been angry I took him away from his book or something, because I have never felt more stupid than I did talking to him. I told him the power was out, and he asked me if "all" of it was out, or just some. (I'm thinking, "Yup, I turned out the lamp and then called you.") Then he wanted to know if there was a noise when the power went out. I told him just the noise of it going off. So he told me that electricity is "mysterious" (he seriously said that) and doesn't make a sound when it goes out, as if he's catching me in a lie or something. I told him I meant the noise the TV and everything else in the house made when it suddenly went off. So then he asked if it is just us, or other people on our street. I told him it was us and just the neighbor next door, and he tells me that no, it should be us and then next five houses. So at this point I start to wonder if he actually shut our power off himself since he seems to know so much. I tell him it is only us, and he keeps insisting more people should be without power and wants us to check again. He asks if I am calling from a phone I can take outside. (Now it is my turn to be sassy) So I tell him since the power is out our cordless phone doesn't work. At that point I was fed up, so I told him to call Adam's cell phone and talk to him. Adam finally convinced him we weren't making it up, and the guy agreed to send a truck out.

Once the truck arrived, the workman walked back along the backyard fence between our house and our neighbors' house to shine his flashlight on the transformer. Adam and I had nothing better to do with no power, so we both pressed our faces against the glass of the two tall windows in the kitchen in the back of our house to watch.

Suddenly, the workman turned, shined his flashlight back toward the house, and started to walk toward us. Adam had walked away from the window a few seconds earlier, but I just stood there like a deer in the headlights. I couldn't figure out if I should run away so he wouldn't see me gawking at him in my thin nightgown, or stand there and pretend I was casually looking out the window at something else in the darkness. I started questioning Adam about what I should do and if he thought the workman could really see me. In the panic, I guess my fight-or-flight response must have finally kicked in because almost involuntarily I whipped around to run back toward the center of the room.

And when I did, that's when I saw it--the full moon. Adam was standing in the middle of the kitchen, mooning the workman (and me). Truthfully, I really doubt the workman could see. But instead of worrying about if the guy saw me, I found myself rolling on the floor, laughing harder than I have in a long time.

You gotta love a man who can diffuse a tense situation.

So it turned out the transformer was bad, and they had our power back on in a few hours. Sorry, no pictures for this post...I'll just keep that one to myself. But I'll be laughing for a long time.

Who's-its and What's-its Galore

2009-03-12T16:05:00.003-04:00

We have moved on to the next phase of the adoption!
This past week, we went up to Indianapolis to have our interviews--couple and individual--with our adoption worker. Of course, we stressed it out way too much, and it was really very simple. The guy is really nice to talk to, and it was very easy going and friendly. The worst part was that we checked several sources and somehow still got bad information about what time zone Indianapolis is in (Eastern, in case you were wondering) and showed up 30 minutes late instead of the 30 minutes early we had planned. Luckily they didn't have any other interviews that day so it all worked out fine.
Connor, who has been dragged on trip after trip to see doctor after doctor, kept saying we were going to Cincinapolis. We finally convinced him of the true name, and now he randomly says, "I want to go to Indianapolis" about once a day. So I guess he had a good experience too.
Then yesterday, we had our home visit. Luckily, with the house being for sale we are used to picking everything up and just where to put it. And since we already have a child, everything was already thoroughly baby-proofed, so it was a breeze as well. Sweet Sharon Leezer, the adoption specialist for our stake, came over and stayed with me while he was here to have two women in the house so it wasn't just me and our adoption worker (agency rules).
So now, we have to create a website that talks about us and our family, as well as paper copies of the same thing. We have to put together pictures of us, as well as answer "What do you think about..." and "Who would you..." and "If you could..." type of questions. And then from there once everything is approved and the home study is written up, we are ready to be selected! So, my question is if anyone has any suggestions about digital scrapbooking. I guess that is how most people do the paper sheets. I have done just a tiny bit of stuff--mostly for the blog, but I think I am going to need to know more.
Wish us luck!

The Love of Strangers

2009-02-26T13:58:00.002-05:00

On Sunday, my niece, Lola, was blessed. It was so fun for all our family to be together, and she is a gorgeous little girl that I am excited to get to know. But my eyes kept drifting to the family a few rows ahead of ours in the chapel with a young child with Downs Syndrome.

My cousin recently found out that the little girl she is carrying has Downs Syndrome. My thoughts keep turning to her and her family over and over in a way I don't think they ever would have before my Connor was diagnosed with his disorder. There is something that bonds us all together--all of us moms who have to deal with the pain of watching our children struggle with more than it seems they should have to bear, and with the painful knowledge of the struggles they will face in their future.

In two weeks it will be one year since we received Connor's diagnosis. In that one year, I can't say my day-to-day life has really changed that much. C still gets his same OT and PT as he was then, and he is just as happy as always. But I know I have changed.

When he was first diagnosed, I cried every day. I couldn't sleep with all the thoughts and worries and anxiety. Some days I wanted to hold him so tight, and some days it was hard to just see him and be reminded over and over of this new knowledge of his SMA. Little thoughts would pop into my head for a millisecond, that maybe I didn't get enough of some vitamin, or maybe something hit my belly really hard while I was pregnant...but then I would remind myself that this was genetic, and there was nothing I could have done. I cried after every new doctor's visit and physical therapy appointment, because it was so hard to go through the story of how we found out over and over again and rehash those initial feelings only to end the appointment being told all the things my son couldn't or wouldn't do in their particular area of expertise.

At this, one of the most difficult times of my life, one of the very greatest blessings I had came from perfect strangers. I started to meet moms and dads from all over the country whose children also had SMA. From the very first phone call or email, each and every one was willing to pour our their hearts to us with love and reassurance that they too felt just what I was feeling, and yes it does get a little better, and these are the things you might face, but these are some great resources that can help you. One mom gave me names of several families in our region of the country, and now we've met many of them. Another mom had just gotten her son's diagnosis a month before we did, and emailed with me during the hardest part, just as a different mom had done/was doing for her. I think Connor has six different blankets, most from people I have never personally met, sent to us to show their love and support when they heard about him.

And now, I still cry (like right now) about the diagnosis, and when C tells me he wants to stand up or gets frustrated when his body just won't move like it should. But I know now that if I did the last year, I can do this too. I know we have so many family and friends who love us and support us. And I know I have a huge network of people out there I have never met who know exactly what I'm going through and will do anything to help me.

So that is what I wish for my cousin...that she will know there are so many of us out here who love and support her, and that she will find those strangers but soon-to-be friends who know just what she is going through to help her along the way.

The Valentine Bandit Strikes Again

2009-02-18T19:16:00.005-05:00

Growing up it was our family tradition that each Valentine's Day the Valentine Bandit would leave presents on our doorstep. Sometime during the day, we would hear a knock at the door and the doorbell would be run repeatedly. My sister and I would race to the front door, fling it open, leap over the gifts, and rush out into the yard in an attempt to capture the ever-elusive Bandit.

When I went to college, the Valentine Bandit found his way to whatever apartment I was living in, but this time he just sent a lovely bouquet of flowers. And now that I am married and have my own little family, a new Bandit has joined their ranks and once again visited our house this past V-day and brought some gifts for Connor.

This past year C had his birthday, and then came September (when most of the rest of the DeLucas were born), and then soon shortly after was Christmas. So he has gotten pretty used to the idea that every month or so he gets some presents. When we explained what the Valentine Bandit was, he started to ask every day if it was Valentine's Day. And when the doorbell finally rang, I wish I had taken a picture of the look of pure excitement that was on his face. This is what he found.

Then we went for a little visit to my parents house...and wouldn't you know a Valentine Bandit showed up there, too. Can you tell that C likes "Lie-Queen" (aka Lightning McQueen)?

And now, he asks every day when the Easter Bunny is coming.

Imagination at Work

2009-02-12T13:58:00.008-05:00

This morning, I was in the kitchen reading a magazine, when I started to hear C's little voice say, "These are my new eyes. These are my NEW eyes." I figured I'd better go check on him before he did some sort of permanent eye damage. When I walked in the living room, this is what I saw.

That kid can make anything out of mega blocks.

C is also discovering ways of communicating that aren't just the words in the dictionary. At lunch a few minutes later, (after coating his face with pudding) he began his new favorite past time, which I like to call the Shhh-Ahhhhhhhh Cycle.

(Press pause on the music player at the bottom of the blog to hear it best.)

He even figured out that you need the finger in front of your mouth to make the "Shh" correct. I bet you have no idea just how long a two year-old can keep this up. In public places. Quiet public places. Ah the joys of motherhood.

We're Adopting

2009-02-03T11:33:00.003-05:00

If you read my blog way back in early last year, you know that we want to have more children, but were unsure about what to do with so many options. If none of this had happened with Connor, we would already have had our second child...but genetics complicated things a little.

Now, after much thought and prayer, we have decided to adopt. We are pretty excited about the decision. The minus would of course be the worries about the finality of a birth mother/father's decision to terminate their parental rights. While we are aware of that, we feel that this is the path the Lord wants us to take and that all things will work out as they should.

And...there are sooo many pluses. Adam's family has quite a few connections to adoption, including a sister who is an adoption worker, so we feel comfortable with the idea and have some knowledge beforehand of how things work. We will get to provide a happy and loving home to a child and grow our family, and Connor will get a sibling. He is pretty excited about it and has already told us a brother or sister is coming to "stay at our house."

So, now all the craziness begins. We have a zillion forms to fill out and send off, and I think some of you we've talked to might be getting some forms too. And we have interviews, and home visits, and maybe in a little over a year, a new addition to our family!

Iced In

2009-01-28T09:48:00.012-05:00

These are adventurous times. Last night, with several inches of snow on the ground and an ice storm looming, we decided to make the perilous trip to my parents' house. Our gas logs weren't working, and with the threat of a power outage we thought it better to be where there was a generator, space heaters, a wood-burning fire place, lots of food, and we would be closer to Adam's work. An hour later, we made it there after passing an accident where an SUV was way off the shoulder of the freeway, in the woods where it had hit a tree facing backwards. Don't ask me how that happened.

The freezing rain started, and by 10pm we began to hear loud crashes as branches broke all over the neighborhood. Unfortunately, a rather large branch fell on my parents, old van. Luckily, their new Odyssey was safe in the garage. My dad, Jenna, and I ventured out to take a look, trying to be careful to avoid all the old trees that might have branches that could fall.

It was gorgeous and menacing at the same time, if that is possible...especially because we were due for 3 more inches of snow the next day.

This morning we woke up and got an even better picture of just how bad things are. School is cancelled for the rest of the week. So, in celebration, we took Connor out for his first try at sledding...and he loved it! We picked a path that was not underneath any trees and away we went!

Jenna had a few wipeouts.

Connor found out there was a very cool tool associated with snow...the snow shovel. He might have liked that even more than the sledding. The only shoes we brought were his slippers and we only had a 4T size snowsuit, so we rubberbanded the feet to keep the snow out (in case you were wondering why he looked like Lt. Dan).

Even when he got a little bit of snow in his eyes, he was still a good sport and wanted to go right back up the hill again.

And, my parents are in the minority that still has power, so we'll probably just stay holed up here tonight, and eat scones and play Wii, hoping for better weather tomorrow.

"Not Me" Monday

2009-01-25T15:23:00.004-05:00

An idea from a friend...

I did NOT purposely not do the dishes because I knew my husband would do them when he got home.
And of course I did NOT snatch the bread tray out of the deacon's hand because I was mad at my child for being so loud in church.
And I would NEVER ignore both the first and the second friend requests on Facebook from someone I barely knew in high school...that would be heartless.
I did NOT lie to my child and say we did not have any suckers...just cause I didn't want to clean it up.
I was NOT the person who used up the toilet paper without replacing the roll.
I would NEVER let my child watch 3 movies in one day...just to have some time to actually get something accomplished.

I would never do those things, because I am a perfect wife and mother. Of course.

Photo Tag

2009-01-24T18:30:00.004-05:00

I am supposed to post the 6th picture from the 6th folder of my pictures. Well...odds are it was going to be this.

Connor. We have about a thousand million bizillion pictures of our little boy. He loved to play with our laundry basket, and really still does. He thought it was so cool to tip it over, and then if we put it on his head he would laugh and laugh...until he realized it was a little too awkward to get off on his own. These days, he likes to use it as a basketball goal and throw his blocks into it. (If it is unfortunately not present, he'll just chuck them across the room as hard as he can.) It also functions well as a racecar to zip across the carpet with him inside. He loves to go fast. We're still a little worried about the chair that can go 5 mph, but I guess we'll just take it as it comes.

Oh, so I guess I'm supposed to tag 6 people. Hmmm...Lynnie, Megan L., Laura, Erin, Stephanie, and Jill.

The "Large Equipment" Mechanics

2009-01-21T14:50:00.011-05:00

Ever since we got our new crib, Connor has been really into "fixing" things. The crib came with this little monkey wrench, and C carried it around with him everywhere for a week. For Christmas Santa brought him a "real" tool set, and he loves it. It came with this sweet tool belt that he likes to wear around. Whenever he sees Adam fixing something, he says he needs his screwdriver and proceeds to poke in the middle of whatever his dad is doing with his tools. Then, the other day he was being too quiet in his room...you know, the too quiet where you know they are probably into some type of trouble. So I go in there, and this is what I see.

He was silently working and totally absorbed. So when I ask what he's doing, he tells me his firetruck was broken, and so of course he is fixing it.

Sure love that kid. And if he really had those skills I could have used him when earlier this week I ran over something in the road that ripped a hole down the side of my tire. Luckily, a real "large equipment mechanic" that works for the state of Kentucky stopped with his "cool" truck with flashing lights (according to C), and got us back on the road in no time. I could have changed it myself, but it was FREEZING outside, and I had no gloves/scarf/hat and a very thin jacket. Normally I would have been freaked out at a stranger stopping, but he did have a state vehicle with the seal and everything, and was obviously doing his best to make me recognize he wasn't creepy. He told me about his kids and that he lived in Waddy (a real town name) and that he'd want somebody to stop and help his wife if they were stuck on the side of the road in 15 degree weather. As I drove away, I saw him stopping again to help another car further down the road that obviously hit the same thing I did.

When we got back on our way I called Adam again to tell him what happened. (He would have come to help, but he was 30 minutes away and I knew he was having a very busy day at work so I convinced him I could do it myself.) He said he was glad I got help and that he had said a prayer for me. I'm pretty grateful that there are still good people in this world, and that God sends them your way when you need them.

KAFOs & IKEA

2009-01-15T12:56:00.006-05:00

Monday we took a little trip up to Cincinnati, to "The Brace Shop." Connor is in desperate need of knew KAFOs, or Knee-Ankle-Foot Orthoses. (Aren't you impressed with my new vocab words?) Basically, they are the full-leg braces with the bar up the sides that allow him to lock his knees back to walk in the walker.

The last time we were at the orthotist here in Louisville, they said the ones he has now (that we got just in April and cost $4000) would maybe last until December or January. He has to walk once or twice a day in them for about an hour, so we really need braces that work. Yesterday I noticed he was starting to get some pretty bad red marks at his knees and upper thighs, so the sooner the better.

We went to The Brace Shop because our neurologist wrote a prescription for a special new type of braces they do there. The orthotist from there went to England and trained with the doctors who created these. They have a little "shelf" in the back that goes under his bottom, so that he can have more stability when he walks and maybe even stand independent of the walker! They also have a hinge at the knee, instead of these horrible 3-strap leather things we have now that totally do not work. And if that all wasn't enough, the plastic has these pictures of trains, planes, cars and trucks on it. I am sooo excited!! No really, I am. These things are a part of our life now and it is so great to hope we'll have something that works even better.

So Connor got casted for the braces, and in 3 weeks we will go back for a fitting and then we get to take them home. Then we'll go back up and have training with the Cincinnati Children's PT on the braces, and see how they help.

So while we were in Cincy, we decided to visit the IKEA. Oh my word, I love that store. I think they should have an income limit, and if you're household income isn't at least $X you should not be allowed in the store because it is pretty much guaranteed you're going to spend way too much. I will say though, that I actually did pretty good. I am the proud new owner of a new set of children's dishes (plates, cups, bowls, and silverware), cutting boards, and a mortar and pestle (thanks, Mom). But...I think we'll be going back again soon.

How BYU Are You?

2009-01-10T20:29:00.002-05:00

The other night, I was having these dreams of my BYU days. It was really weird cause I was back at BYU, but somehow also married...and yet Adam didn't live with me. Only in a dream.

Anyway, then my awesome cousin, Merry, had this on her blog, so I thought I'd fill it out. And, I expect all my friends who ever went to BYU, BYU-I/Ricks, or even lived in Provo to fill this out.

77 questions.

[X] You have been kissed at lease once
[_] Your first kiss was on campus
[X] You’ve had a boyfriend/girlfriend
[X] You lived in the dorms your freshman year
[X] You went to Homecoming or Preference
[X] You hiked the Y
[_] You’ve taken a social dance class
[X] You regularly attended FHE for at least a semester
[X] You’ve participated in Choose to Give
[_] You’ve been to Liberty Square for a party at least once
[X] You’ve driven around south of campus for at least 20 minutes trying to find a parking spot[X] You know the cougar fight song
[X] You’ve crossed the crosswalk without using the flags or biked through a red light
[_] You’ve been to Friday Night Live
[X] You’ve performed or witnessed an act that made it onto Police Beat
[_] You’ve been on a “date” to the bell tower or duck pond
[X] You’ve been to the Bean Museum for FHE
[X] You’ve been to Divine Comedy
[X] You’ve been to International Cinema
[_] You are engaged
[X] You are married
[X] …in the temple
[_] You were previously engaged/married
[X] You have kids or are expecting kids
[X] Your birth parents are still married
[X] …in the temple
[X] You have at least three siblings
[X] You’ve taken a marriage prep or relations class
[X] You’ve taken at least one religion class that is not based on the scriptures
[X] You have slept on a couch in a restroom
[X] You have been to the BYU Creamery
[X] You have been in one of the BYU choirs
[_] You’ve been on a date to Fat Cats
[X] You have read Twilight
[X] …book 2
[X] …book 3
[X] …book 4
[X] …seen the movie
[_] …more than once
[_] You’ve waited in line at the Bookstore for the Harry Potter or Twilight book premiere
[X] You have seen The Singles Ward or Sons of Provo
[X] You have walked out of a movie you found morally reprehensible
[_] You know where the “chastity line” is
[X] You can finish the phrase “Nothing good happens after ______”
[X] You read the Daily Universe at least 3x a week
[X] …and it’s the only newspaper you read
[X] You’ve personally known someone who was reported to the Honor Code Office
[_] You’ve participated in or watched a Mr. BYU contest
[X] You’ve received personal revelation that he/she is “the one” (or been told this)
[X] …and told him/her about your revelation (or been told this)
[_] …and then they rejected you (or rejected them)
[_] You’ve been to the Nickelcade
[_] You’ve been to Classic Skating
[X] You’ve ignored your parents’ phone calls for at least 3 days
[_] …and then they called the University Police
[_] You’ve been pulled over by the University Police
[X] You watch The Office religiously
[X] You mostly wear jeans and t-shirts or plain fitted shirts
[X] You own at least 3 things from American Eagle or Hollister
[_] Your sacrament meeting is a fashion show/scam session
[X] You’ve been on a date to the Provo River

You’ve kissed in a…
[_] …campus parking lot
[_] …Provo Canyon or Squaw Peak
[_] …on temple grounds
[_] …on a couch as soon as your roommates left the room
[_] You think UVU is not a real university
[_] You hate U of U with a passion

FOR GIRLS (don’t answer if you’re a guy)
[X] You own knee-length shorts
[X] You regularly wear camisoles/undershirts for modesty reasons
[X] You are a MFHD, RMYL, Elementary Education, or Exercise Science Major
[X] Your major crush ended up dating a MFHD, RMYL, Elementary Education, or Exercise Science major
[X] You have had at least one roommate who is in hair or dental school
[X] You own The Italian Job or The Princess Bride
[X] You wear makeup at least 3x a week
[X] You do something with your hair (other than brush it/ponytail) at least 3x a week
[_] You went or plan on going on a mission
[_] …because you couldn’t get married

FOR GUYS (don’t answer if you’re a girl)
[_] You shave every (or almost every) morning
[_] You know when your hair is “too long”
[_] You know what the “divide by 2 and add 7″ dating rule is
[_] …and you follow it
[_] You’ve dated freshmen girls as a RM
[_] …when you already knew better
[_] You’ve used the phrase “On my mission…” to a girl
[_] At least 3 girls have baked cookies or meals for you
[_] You went or plan on going on a mission
[_] …because you wanted to get married

TOTAL: 51

A: 68-77
B: 60-67
C: 53-66
D: 45-52
F: 44 or below

Wow. I guess I should have kissed more people someplace on campus. Ha! No thanks!

The Sports Widow's Log

2009-01-05T13:37:00.011-05:00

A few of Adam's friends' wives and I sometimes joke that we're sports widows. Except for us, our husbands pretty much live and breathe sports, and it is all they talk about when they get together. This year, I was privileged enough to actually be the one invited when Adam got two tickets to the University of Louisville (UofL) vs. University of Nevada Las Vegas (UNLV) game on New Year's Eve. I had a great time, but I realized along the way that the experience was a little different for each of us...

Adam wanted to rush to our seats to see his favorite part--when they introduce the players.

I am completely focused on reaching the bathroom. I had a baby and now when I gotta go, I gotta go.

Adam notices how many Louisville fans are there for the sold out game.

I notice how funny the people look who are dressed in tuxedos and evening gowns--obviously going out after the game. But seriously, wearing heels in bleachers is asking for trouble.

Adam is already angry at Louisville who is already behind when we get to our seats.

I am THRILLED with our seats--5 rows from the floor!! I can yell at T-Will and he'll hear me! I can see the sweat on Rick Pitino's face and actually hear him yelling.

Adam yells at the refs for totally missing the fact that T-Will got fouled about 3 times on one lay-up.

I notice the ref is wearing pants with 4 (count em...4) pleats on EACH SIDE! Where could you even find pants like that? Uh, the 80s called. They want their pants back.

Adam tries to get up on a chair to wave his arms during UNLVs free throws (since we were behind the basket).

I wave my arms like a mad woman to join in, and Adam (lovingly) tells me I'm a dork. Little does he know I considered lifting my shirt up to fake-flash them....cause I had two shirts on underneath. I hope my mom's not reading this.

Adam gets excited by how loud everyone cheers when T-Will raises his arms up to get the crowd going after they take foul shots.

I am totally preoccupied by the peculiar woman seated beside me. During each foul shot, she rubs her hands together as if making a fire, and then does this whip up thing with her right arm and holds the Louisville "L" in the air. If they make the shot, she makes a swishing motion with her hand. And her face is completely blank, as if all her weird hand motions are as everyday as breathing.

Adam starts making a "T" sign with his hands and pointing it at the UNLV bench, along with the rest of the crowd.

I am completely befuddled as to why everyone is motioning for a timeout when UNLV has clearly already taken one. Turns out the "T" is for technical for their potty-mouth coach. Ahhhh.

Adam is heartbroken when his team loses by one point.

I cheer him up the next day, by finding his picture on the front page of the Courier-Journal Sports section. It's up top--follow the player number zero's waistline to the right and about halfway between the player and the edge of the picture is Adam's face. Black jacket with a red shirt.

We really did have a great time. A wise woman (Vicki O'Brien) once told me you can find much happiness if you learn to love what your husband loves, and I do. Anyone who has known me for awhile knows that a lot of those sports words never used to be in my vocabulary. I really do love Louisville sports...in fact, as I write this I am hanging out in a Louisville long-sleeve T. And, believe it or not, I love that Adam loves it...especially when I am very secure in the knowledge that as much as Louisville sports is his passion, he loves me just a little bit more.

Christmas for $5

2008-12-30T15:10:00.007-05:00

So I thought maybe this year I would get a picture of Connor in his Sunday Christmas outfit after church...just so my mom could see how cute he was in the outfit she got him. But he was much more interested in the candy cane Sis. Stewart gave him in nursery. I know...I am a terrible mom for giving my child candy in his nice clothes. But I can't help it--those candy canes (or "candy things" as he calls them) just make him so dang happy. When Santa gave Connor one after he sat on his lap, he talked about it for days--not that he saw Santa, but that Santa gave him a candy thing. Connor's perfect Christmas--a box of candy canes for $1.

But, being the dutiful parents we are, we insisted on getting him several other Christmas presents. It is so hard when your two year-old looks at you and says, "Maybe Santa bring me ____?" to not jump in the car, drive the the store, and pick up the coolest ____ you can find.

However, we soon discovered we should have resisted the urge. One of the biggest hits of Christmas was a mop--yup, a mop. Our son has an obsession with items used for cleaning. So when he opened up the red, black, and white mop (that we got at Walmart for $3.88) he almost couldn't contain himself.

Five days later, it has already made a trip with us to St. Louis and back. Did you know it can also double as a sword? And reach the front seat in our van to poke mommy? It is such a handy tool.

I don't know why we ever thought we needed to spend a lot on Christmas, when true happiness can be achieved with just a five dollar bill.

The Nightmare Before Christmas

2008-12-24T11:21:00.003-05:00

Wow. What a night. I don't know if you've been watching the weather reports, but it was a little "treacherous" last night in Cincinnati. My roommate from BYU, Erin, and her husband Alex were flying in there to visit her family, and Adam and I went to pick them up from the airport and spend the evening with them. We left Louisville around 2pm. The weather originally said it was just going to be a little gloomy, but that quickly changed to freezing rain advisories, and we saw every bit of it. Their flight came in at 3:50pm, and we should have had plenty of time (since the Cincy airport is actually in Kentucky) but it still took us over 2 hours to get there. We saw car after car spun off on the side of the road. When we finally made it to the airport and picked them up, we decided to go to the Gap Distribution Outlet a few exits down from the airport. Traffic was literally crawling, and we didn't even make it the two exits until 6pm!!!

So we spent some quality shopping time, hoping to wait out the bad driving conditions since it was supposed to warm up later in the evening (yeah, I know that's weird, but true). We kept hearing these bits and pieces of strange conversations about this freeway being closed and that freeway being closed, but finally decided to brave the roads again, and headed up into the city. On the way, we had to avoid a bumper complete with a license plate in the middle of the road, and a van (I believe it was the owner) facing the wrong direction on the other side of the the road. We made it to Red Robin a little after 8pm...and were starving!! We were one of only 3 or 4 groups in the whole restaurant. But it was sooo worth it--who knew their Parmesan garlic fries were bottomless, too? And the freckled lemonade--love it!

After Red Robin we dropped our friends off at Erin's parents' house, and got to see her mom who is one of the sweetest most wonderful people in the whole world. She asked if we wanted to spend the night--an offer we turned down and quickly regretted the decision. We got back on the freeway to head back and thought we were home free, but when 71 split from 75, there was yet another accident and 71 was completely shut down. After a long, long wait, we finally made it back to Louisville around 2am.

So, for anyone who has seen The Nightmare Before Christmas, you know it has a happy ending. And so does this. Today, when we woke up and started thinking back about the previous day, somehow it wasn't that bad of a memory. First of all, we were incredibly blessed that Connor wasn't with us. He stayed home and played with his Gram and had a wonderful time and was in bed by 8pm. Secondly, Adam and I actually got to spend some alone time together on the way home, though I think both of us would have rather been asleep in bed. And finally, as horrible as all the traffic was, I can honestly say we had a great time last night. Erin always has been and always will be one of the people I most enjoy. And when you put Alex and Adam together....my face hurt from smiling and laughing so much. Adam and I both commented it was good it wasn't on Christmas Eve. But on this Christmas Eve as I reflect on all our blessings, I'm thankful to have such wonderful friends who make even the worst situations into memories worth keeping.

Tale of Two Trees

2008-12-17T15:03:00.009-05:00

People sometimes make fun of me because I try to have my Christmas shopping done by December. Well for those of you who don't know, December is a crazy, busy month. Just this past weekend we were finally able to put up our trees. Yup, we put up two trees.

The first is the main tree, a live tree, and the one in our living room that most everyone sees. Since Connor is actually old enough to understand baby Jesus and that Santa comes, it was really fun to decorate with him this year.

Last year we just didn't put decorations on the bottom foot of the tree so they wouldn't get eaten. This year he's out of that stage, so the bottom part of the tree is filled with wooden or hard-to-break ornaments. It's Connor's little area, where he is free to remove and replace ornaments--which he does about three times a day. But breakable or not, he is obviously still quite impressed by them.

Our second tree is in Adam's office. When we got married, Adam brought with him a nice collection of sports ornaments and we or our family members add to it every year. We have John Elway, basketball snowmen, bells in the shape of cardinals, cardinals, cardinal ornament balls, just plain basketballs, and many more. And the tree-topper is Santa Claus...dressed in a basketball uniform and holding a basketball (of course...are ya catchin' on to the theme?). The first year we were married, we were in apartments where we weren't allowed to have a live tree, so we bought this little 4 ft. tree. A couple of years ago we realized that it would be the perfect place to display Adam's collection, and we could put it in his already-UofL-themed office with a few strings of red and white lights. Adam gets really excited to put this up every year, and it's really grown on me, too. Most of the shows we like on TV we miss, so we watch them later on the computer in his office while lounging on the guest bed...and now we get to do it by Christmas-tree light.

Angry Face

2008-12-12T16:10:00.002-05:00

Connor has gotten into making this angry face whenever we ask him to do something he doesn't want to do. Sad thing is...I'm pretty sure that's the same face I make at him when he does something I don't want him to do. It is scary what we teach our kids.

An Early Christmas Gift

2008-12-12T14:11:00.025-05:00

This Christmas, we got one of the best presents of all a little early in the month. One of my roommates from BYU, Lynnie, and her kids came to stay with us while her husband attended a business conference. We were at their house in August, and were sooo excited to see them again so soon.

Lynnie was here for 5 days, and we were sad to see her go. Unfortunately, the week before they got there our house fell apart. Our dishwasher was leaking (again!), two different closet doors came off the hinges, and then the disposal stopped working. Lynnie's husband, John, who was at our house for just one day, convinced Adam that repairing it would be quick and easy. And it would have been...except for a few items we were missing. Three trips to Lowe's later, our handy hubbies had it all fixed. Thanks to John who was (and always is) so willing to lend a hand.

Lynnie is such a patient and loving mom. Having three kids is not easy, and I was so impressed with her as I watched her juggle everything and still make time for each child.

Connor loved having other kids around the house. Everything Ava (her four year-old) did was cool, and he and Nathan stole toy after toy from each other (as is age-appropriate at two), but still announced over and over that they were friends. And that little Elias--I have truly never seen a baby that smiles so much. Lynnie somehow always manages to come here in winter, but despite the cold, wet weather we managed to have quite a bit of fun. We went to inside buildings at the zoo, but the two year-olds still decided snuggling in the wagon was the best place to be. Lynnie was so into the stilt birds, she tried to become "one" with the animals and do as they did. (Sorry sweetie--you knew when I took this it was going on the blog!)

We also got a chance to see Santa at the library and make some fun Christmas crafts.

And..we took some time to make some tasty Christmas sugar cookies. Even little Lias helped us keep track of the spatula. And then we had a little milk to top it all off.

Connor had a little "issue" with the sprinkles, and added about half the bottle to his one cookie.

I have lived many places and had many friends, but Lynnie is one of those friends you just keep forever. She, Erin, and I were roommates our sophomore year at BYU, and we have never lost touch. After someone is your roommate, they have seen you at your very worst, both physically and emotionally, and after that you just don't have anything to hide with them. If I have something I don't feel I can share with anyone else, I know I can tell those two. Sometimes God just places people in your path to help you, and I am grateful that they have never left.

We had a fantastic time, and hope to see the Genhos again soon...in warmer, drier weather.

Wii Love Thanksgiving

2008-11-30T16:31:00.005-05:00

We had a great Thanksgiving. I can honestly say I have never eaten so many rolls...between Sarah's rolls and my mom's rolls over the last few days, I think I ate at least a dozen. And I don't regret a one...I love bread. If I were a superhero (and all moms are) that would be my kryptonite.

Anyway, Jenna's super-cool friend, Hannah, let us borrow her Wii for a few days, and with our extra time off around Thanksgiving we got in quite a few games. There are two really awesome things about the Wii. First, even if you are really horrible at a sport in real life, you can totally smoke all your friends on the Wii. And second, if you take pictures of people playing, it looks pretty hilarious.

(See. That was bowling in case you couldn't tell.)

Connor also quite enjoyed the Wii. His physical therapist actually suggested it as a good activity, and he took right to it and began practicing. (That is what he's saying, in case you can't tell.) Maybe Santa will bring us one for Christmas. Wii or wheelchair...hmmm...do you think we can convince the insurance to cover the Wii?

The Winter Zoo

2008-11-23T19:57:00.007-05:00

I kept thinking it might be fun to go to the zoo in the winter...after all, our pass is good year round. And they do have several inside buildings that are heated. In the summer time I never want to stay in the buildings too long cause that's where the AC is so everyone is there. Then, I talked to our friend, Jill, who said she loves taking her kids to the zoo in the winter...and it was settled! So we grabbed Alyssa (who sadly/happily is once again employed and very soon will not be able to play anymore), bundled up Connor, and headed off to the indoor "Islands" exhibit and Herpaquarium at the zoo. It turned out to be a really great idea. As we were walking in, a class of elementary schoolers was leaving, and besides them I think we saw three other families the whole time we were in the buildings. Usually Connor is quiet around lots of other people, but with just us there he talked and talked, and we got as much time as we wanted to look at whatever he liked.

By far the best part was the orangutans. Connor's favorite at the zoo is always the monkeys, and they are what he calls the "big monkeys"...and luckily they're inside. So we parked ourselves on a bench in front of the big window into their area to watch them play. After a minute or two, one of the zoo docents came into the room on her way some place else, and stopped to chat with us. One of the orangutans, who we learned was named Amber, obviously recognized the lady and came right up to the window to see her. It is one thing to see them from a few feet away, and another thing to actually interact with them.

She told us that Amber loves you to pull shiny things out of your pockets, so we pulled out wallets and cell phones, and everything we could think of, and Amber would put her finger up to the window and point at it if she liked it. It was an amazing experience and we will definitely be back.

Weather Turning Colder...Time for Wheelchairs!

2008-11-17T14:13:00.004-05:00

We woke up on Sunday morning to our first snow...okay so it was just a light dusting, but it was still fun to see. I've always loved the idea of a white Christmas (and that movie), but your dreams change a little when you get married, have a family, and have to drive around a bunch on Christmas day.

We knew toward the end of this year we'd be looking at getting a wheelchair for Connor...and that time has come! We had the wheelchair guy out to our house today for about the third time. I was really excited for him to come because the chair he was bringing out was a brand new model that lowers itself all the way to the floor...so Connor can crawl up in it all on his own! He's made it clear how independent he is, and I think this will really help him mobility-wise. Sometimes it is really hard to watch all the kids he's playing with run around and he's just left behind trying to crawl to catch up with them. This chair goes pretty fast, so I think he could probably beat a lot of them in a race (and probably mow them down--he's not too good at steering yet). And I know that a big ol' chair like this is not really advantageous for running around with little kids, but at least he'll be able to explore his environment and go where he wants to go. And he's only getting bigger so it is getting a little harder to carry him around--this should help with that, too. He'll probably just use this when we leave home for something, but I am still just so excited for him to have it and all the opportunities it will give him.

Connor even got to drive it all on his own...with Dad right next to him. In this video the chair is tilted back and moved out in front a little so it appears much longer that it would be in a normal position. But this thing can elevate him all the way up to reach the kitchen counter if he wants...not sure if that is totally a good thing.

Our next step is insurance approval. We are a little worried because the retail cost is about $24,000 (I know!! It's as much as new car!!). But they said they've gotten them approved before and he is delivering one next week to somebody else, so it is all a matter of justification I guess. We'll just hope for the best. Pray for our wheelchair!!

The Vegetarian Who Runs

2008-11-13T12:21:00.009-05:00

Our little Connor is growing by leaps and bounds. I've talked in previous posts about his desire to be independent, and this last little while he has grown even more so. In the last few weeks, Connor decided that food was no longer a necessity, and that he only needed milk and juice to survive. We tried every food we could think of that any kid might like--macaroni and cheese, hot dogs, fish sticks, chicken nuggets, chips, cookies, crackers--you name it we tried it. I didn't care what he ate as long as it was something. We did get him to eat saltines, pudding sometimes, and ice cream. But...most of our meals ended with Connor crying, me crying, or Adam walking out of the room in frustration.

He has done this before, but it was due to a stomach flu and passed quickly...and this did not. I thought maybe it was the Carnitor we started, but he stopped eating before that. So we were pretty stumped, and it got to the point where I was almost hysterical. The kid already has to have Carnation Instant Breakfast in his milk to give him more calories, and if he doesn't even eat the foods in his regular diet then all was pretty much lost.

So then, Adam suggests that if he likes to still drink maybe we puree up his food and feed it to him that way. I disagreed--telling Adam he needed to chew for healthy teeth and that I was sure he would change his mind or we would find something he would eat. After all, I'm the all-knowing mom, right? And somewhere in the back of my mind I was worried the SMA caused a weakness somewhere, and he was no longer able to normally...so I needed him to do it--just to prove to me that all was fine with his muscles.

Then, a few nights ago, he spends the evening with my mom. We arrived back at her house to hear the news that he ate applesauce and pureed pears, with a STRAW. Adam was right. I was wrong. He thought the straw was fun and exciting, and will try most things through it. And today for lunch, he ate his saltines with peanut butter, whole corn (with a spoon!), and applesauce with a straw and spoon. So maybe he'll be a Vegetarian for awhile...I don't care, as long as he's eating. (Can you puree hot dogs??)

Also, a few days ago, our independent Connor visited Bellarmine University to give the students in the lab our physical therapist (PT) teaches an idea of how to work with kids with SMA. Connor (and my) favorite part was the "running" on the treadmill. Okay, so he wasn't really running, but it was faster than I've ever seen him walk. He did great and was perfectly happy the whole time we were there. I think he just liked all the attention. And at the end of the day, his PT was his favorite person, because she gave him a brand new broom!

Check out the video of him on the treadmill:
http://s371.photobucket.com/albums/oo154/akdeluca03/?action=view&current=100_1272.flv

The Man in My Life

2008-11-13T10:10:00.002-05:00

What's your husband's name? Adam Jared DeLuca
How long have you been married? 5 years, 3 months, 4 days
How long did you date? We met on 10-26-02, were engaged in May 2003, and got married in August 2003...just past 9 months
How old is he? 27
Who eats more sweets? Hmmm...we don't keep much in the house, and when we get it we pretty much share. Except for the Nutty Bars...sorry, sweetheart.
Who said "I Love You" first? We disagree about this...he says he did, but the way I remember it we were having this conversation about it and he said several things similar to that and I was the one who got the drift of what he was trying to say and said it first...either way, we were both on the same page. :)
Who is taller? Adam, by a foot.
Who is smarter? I think we would agree it's a toss up...we each have our areas of expertise.
Who does the laundry? I would like to, but Adam usually beats me to it. Like this morning.
Who pays the bills? I do, but he occasionally "audits" my work.
Who sleeps on the right side of the bed? Is that looking at the bed or from in the bed? Right now from in the bed I'm on the right, but we switch every couple of months. Don't know why.
Does he snore? Not since he lost 50 lbs. the first year we were married.
What does he do in his spare time? Louisville football & basketball, playing basketball with his friends, playing football and basketball on Playstation, reading his Louisville sports magazine (see a theme here?)
Who mows the lawn? When Adam was in school, it was me. (I think the neighbors thought I was weird for mowing the lawn when I was 6 months pregnant...and Adam got mad at me.) Now it is pretty much Adam, unless I decide I want the exercise.
What is his favorite candy bar? Reese's Cups
Who cooks dinner? Me usually, though Adam is always quick to offer if I look tired and haven't started when he gets home. He has really expanded his repertoire.
Who drives? Adam
Who is the first to say they are wrong? Adam. I am working on it though. A bit.
Who kissed who first? A joint effort. Adam got himself right in my face, which I didn't have the guts to do....and then I just leaned forward and kissed him.
Who asked who out first? Our first official date was after we had already kissed so we did things a little backwards...but Adam asked me to lunch at Ruby Tuesdays.
Who wears the pants? I like to think it's me, but the truth is he has the last word.
Does he say he loves you every day? More than once.
I tag: Lynnie, Jessica R., and Kristen K.

The Meds Begin

2008-11-04T14:31:00.003-05:00

For months and months, as we visit each of a million new doctors, we have been asked, "What meds does Connor take for SMA?" My answer was always, "Nothing." We've never been given anything and we've never been told to take anything. But each time I was asked that, something (very paranoid) inside me was yelling, "SHOULD I BE?? WHAT DO YOU KNOW THAT I DON'T? ARE OTHER SMA KIDS TAKING SOMETHING? IS THERE SOMETHING OUT THERE THAT CAN HELP HIM THAT HE'S NOT TAKING??"

And the truth is, there is nothing. Nothing that cures this or can take it away from us. Nothing to make the progression stop. Yes, there are some things that some families feel makes it slow down in their kids, but most have yucky side effects that could make some kids worse. That just seems so backwards to the way things should be. There is always something you can do...if you get an infection, you take an antibiotic...if you have a sore throat, you can use that yucky spray...if you get really sick, you go into the hospital and get some major drugs, are maybe hooked up to a machine or two for a few days, and then you start to get better. But my child has this horrible illness that took away his walking and makes him fall all the time with the simplest tasks, and makes me scared to death of the common cold, and will only get worse...and yup, we're taking nothing.

But today, we have something! This morning Connor took his first dose of Carnitor. It is supposed to help him use energy more efficiently. (And judging by the look on his face that is some pretty nasty stuff. I think we'll hide it in some juice tonight.) In four weeks we start the Co Q-10, an over-the-counter supplement that helps the mitochondria in his cells with protein coding blah blah blah biology I don't remember from college.

So, since our life has now become backward, I guess I get a free pass...a free pass to be excited about taking some meds that in the back of my mind I know really aren't doing much...but hooray for SOMETHING!

Mr. Independent's Halloween

2008-11-03T14:40:00.012-05:00

This year was the first year Connor really got into Halloween. And of course we did all the usual stuff, which Mr. Independent had to be a part of but in his own way. Before Adam went out of town, we (finally!) carved our pumpkins from Gallrein Farms. Guess whose is whose!

Mr. Independent is very into knives. Don't ask me why--I promise we aren't violent people. He insists on having a knife at every meal...so we have some kid knives and cheeseball knives that are solely his. But instead of letting him anywhere near the sharp knives this time, we went the marker route.

Next, we went to our Storytime Halloween Party. Elsie (aka SuperGirl, aka Connor's cousin) is in our group as was as cute as always. They had tons of "pupcakes" there, and I tried to feed Mr. Independent his in hopes of preserving the costume. But alas, he would have none of it and insisted on holding it himself to eat. He did get frosting on his giraffe leg, but I think the spots hid it pretty well.

And finally, on Friday night, we went trick-or-treating. Mr. Independent was adamant the he ring each doorbell himself, and also that he needed to choose a piece of candy from the bowl instead of waiting for it to be placed in his "pumptin." (He got away with it because he is little and cute, but we're going to work on that for next year.) And when all was said and done, his favorite thing was not the tasty chocolate or yummy candies he got--nope, he just wanted to go home and eat the peanut butter crackers.

Mrs. Palin

2008-10-21T21:39:00.004-04:00

http://www.youtube.com/watch?v=XR9V_aOCga0

No matter who you're voting for, this is hillarious.

The Lab

2008-10-20T16:25:00.005-04:00

Today I decided to brave the Kosair Children's Hospital lab once again...and on my own with Connor for the first time. I am trying really hard to make all this stuff we have to do for his SMA a part of our normal life, and I finally decided I was strong enough to do this...and I was (!) despite us having trouble there once again. I don't even know how many times we've been there, but our most recent experience before today hadn't been the greatest...we had to do blood and urine labs (urine from a barely 2 year-old...that was fun) as well as an X-ray, and for some reason the lab couldn' t read the doctor's orders for the bloodwork (I could...and I don't work in a lab everyday...hmmmm), so we were told to get a new order and drive all the way back there again another day. So, today I decided to venture out and give it a shot. This is Connor in his carseat--he was so happy I decided to take a picture...but little did he know the fate that awaited him. We ended up staying in the lab waiting room for a little over 2 hours, while the lab people tried to get ahold of our neurologist and see if she really wanted him to have the same labs done as he had in February. (Hello--my son has a progressive disease so things are going to change. But no one listens to me. I'm just the mom.) They had a big "No Food or Drink" sign posted, but after two hours I just gave up and decided if they were going to kick me out for giving my child a cracker when it was an hour and a half past lunch then they could go ahead and do it because we were ready to go. Finally, we got to go back and have the blood draw and finger stick, and my sweet boy didn't even cry a tear...probably because he was staring the whole time at the big jar of suckers he was going to have two of when we were through. I just pray the results actually get back to the doctor in Cincinnati.

Then I got home and saw this picture I had forgotten about, and laughed out loud, and my whole day changed for the better. Adam has been out of town at his grandmother's memorial, and it will be good to have him home.

Tagged Again?

2008-10-16T22:22:00.003-04:00

Okay...so I promise not to do anymore, but this was so interesting to hear from everyone else that I really just did this to hear from more people.

JOBS I'VE HAD--
1. Sears Teleservice (i agree with Shannon--never again!)
2. BYU Takeout Catering
3. Administrative Coordinator (aka main secretary)
4. Insulin Pump Director

4 MOVIES I'VE WATCHED MORE THAN ONCE--
1. Sabrina (the new version with Harrison Ford)
2. Pride & Prejudice (6 VHS version)
3. Return to Me
4. So I Married and Axe Murderer

TV SHOWS I WATCH--
1. The Office
2. Bones
3. Gossip Girl (yup, I'm admitting it)
4. Chuck

4 PEOPLE WHO EMAIL ME REGULARLY--
1. Adam
2. Mom
3. Adam again (we email back and forth like 6 times a day...I am totally going to get him fired)
4. Renee (Connor's PT)

4 OF MY FAVORITE FOODS--
1. Mint Chocolate anything
2. Pizza Hut breadsticks
3. Talerino
4. Adam's mom's spaghetti sauce

PLACES I'D LIKE TO VISIT--
1. California
2. my grandma's house (again soon)
3. Mediterranean
4. a cruise anywhere

4 people I tag:
1. Alyssa
2. Erin (get a blog!!)
3. Scott & Becca
4. Holly

The Perfect Pumpkin

2008-10-14T13:40:00.002-04:00

If you are looking for cool faces to carve into a pumpkin, check out this site:

http://www.bhg.com/holidays/halloween/pumpkin-carving/pumpkin-stencil-maker/

You have to register to use it, but it's really fun...and better than triangle eyes, triangle nose, and jagged teeth.

Tagged

2008-10-13T14:42:00.005-04:00

Who: Lynnie, Geneil, Alyssa, Merry (don't forget your special cute friend), Erin, Anna, Traci, Shannon, Heidi, Monica, Andrea, Cindy, Miranda, and Steph

Subject: Wonderful Qualities. List every member who lives in your home. Include 5 wonderful qualities each member holds.

The Catch: You must include yourself.

Why: It's easy to just go about each day and forget to be grateful.

Okay, so this is a little easier for me than some of you cause it's just the three of us. (Laura--you obviously have too much time now that you're not the primary president anymore...but as usual, your idea is very cute.)

Adam

1. Forgiving...definitely #1. Heavenly Father blessed me with a husband that was quick to apologize, cause He sure knew I'm not, even though it is usually my fault.
2. Good sense of humor...even if we weren't attracted to each other in any way, we would still be best friends because he makes me laugh every day (today he called me 30 minutes after he left for work just to pretend to be this dorky politician and ask for my vote)
3. Wonderful Father...I am continually impressed with all he is willing to do for our little boy.
4. Tall (6'4'), Dark (hair and skin--no sweetie, you aren't pale, you're Italian so that's not possible), and Handsome
5. Good Friend...not only is mine, of course, but I really admire all the things he does for his friends and how he is a great example of friendship

Kristen

1. Compassionate...my mom always taught me that other people are more important than ourselves and to put others' feelings first
2. Good Cook...okay, maybe just for Adam who eats everything (even bad tasting things)
3. Organized...I am a fanatical list-maker
4. Loyal...I am glad to do anything to help a friend, and I want to keep friends for forever if possible
5. Silly...ask me how many ridiculous songs I (and Alyssa, Geneil, Anna, Erin, Mary...and soon Connor) know, and do not ask me to re-create all the crazy things I've done to make Connor laugh.

Connor-Bdonner

1. Strong...he may not be physically strong, but no matter where or how he falls he almost never cries and is so, so brave
2. Observant...he constantly talks about the world around him and what he thinks about it, and helps me notice more of the good in everyday things
3. Ticklish...nothing makes me happier than tickling him, and apparently it makes him happy too cause he always says, "do again"
4. Compassionate...after throwing his toys against the wall, he always picks them up and says, "Kiss better"
5. Stubborn...yes, this is a great quality! It take a lot of stubbornness to stick to something you know is true even though everyone else thinks otherwise. I hope he always stays this way.

Vacation Days

2008-10-11T12:52:00.032-04:00

Adam had a few vacation days to burn, so he took off Thursday and Friday of this week. It really worked out well for us because Adam and I ended up with a stomach virus late Thursday night and Friday morning. But despite the illness, we really did get to do a lot and Connor had a great time.

Thursday night we went to the "World's Largest Halloween Party" at the zoo. As you come in, they have you walk down this path with hidden speakers on the side and recordings of people going, "Boo!" which was surprisingly scary (at least to me--Adam thinks I'm a sissy). They had the "This is Halloween" song from The Nightmare Before Christmas playing (which is still currently stuck in my head), and Connor wasn't quite sure what he thought of it all. But he was very brave, though he held to the sides of the wagon for dear life.

Luckily, it got much less scary after that. He quickly got into the groove of things, saying "Trick Ter Treat" as we pulled the wagon up to each booth where they were handing out candy.

There were storybook characters at different places around the zoo, so we made a few friends. (And according to Adam that Tinman was "playin' for the other team".) We even got to see what our little boy would have looked like had I married Willy Wonka instead. (No smile of course, because Oompa Loopma's don't smile.)

There were also a few scary sightings...like the half-naked caveman by the fence (wait...aren't all cavemen half-naked?) and the headless horseman that came after us on the train. But we had a great time and will definitely be back next year.

On Saturday, after we were recovered from our little bout with illness (sorry, no pics of that), we took a trip to Gallrein Farms here in Shelbyville.

We went to the petting zoo and got to see a goat up close (our second experience with goats--after John & Lynnie's), but the sheep were a little loud so Connor held Daddy's hand. They had a big red tractor, which he loved, and about a million pumpkins.

Adam (who opted out of shaving for this vacation) verified the accuracy of their measuring tools, while I made friends with a nice witch. Then we hopped on the hayride for a trip out to the pumpkin patch.

And at the end of the day, it was time for a nice long nap.

Making Jesus Happy

2008-10-07T21:22:00.003-04:00

So the other day, when Connor and I had just finished "Kroger-ing" (well we would have gone to Walmart but he said he wanted to go where the cars were on the carts--I am such a softy), I let him ride on the 1 cent fire truck. Mostly he's just scared of the noise, but he insists on sitting on it and gripping the edges for dear life...though that day, to his credit, he did actually reach out for the wheel. When the ride finished, he said he wanted to ride the horsey next to it. I told him we would save the horsey for another day, and he said, "Ride horsey Sunday?" Sunday is the only day of the week he knows, because that's when he gets to go to nursery with cousin Elsie. So I tried to figure out how to tell a barely two year-old about keeping the sabbath day holy, and the best I could come up with was, "We don't come to Kroger on Sundays because that makes Jesus sad." He got this really concerned look on his face, and said, "Jesus sad...Jesus sad.." and kept repeating it over and over like it was really bothering him. So we walked out to the van and I strapped him into his seat and started to back up, and he got quiet for a minute. Then all of the sudden he said in sweet, soft voice, "Jesus sad. Hold him. Love him." I seriously don't think that boy could be any cuter. I told him how nice he was, and that we love Jesus and Jesus loves us. Now that is what he tells every new person we see, "Jesus loves us!", like it is the best news he's ever heard. And so it should be.

p.s. We decided to go with the giraffe costume. He has a new thing with giraffes--with the zoo giraffes, the giraffe from the carousel (see picture below), and the wooden toy giraffe Grandpa brought back from one of the Europe trips. I'm sure some pictures of it will show up here soon.

Goodbye

2008-10-04T06:58:00.003-04:00

On Wednesday night, we got the call that Adam's grandma had passed away. She was one of just a handful of extended family members Adam has, so though she lived a long life and was very sick at the end, it was still hard to let her go.

I have to say that she was one of those people you meet in life that you feel blessed to have known. She was amazingly resilient...she should have left us 10 times before but I think she and her body were just too stubborn to give in to anything until she was ready. But that is what you'd expect from a nurse that worked on her feet every day right up until her baby was born. The first night I met her at Adam's parents' house, I thought for about 2 minutes that she must really not like me from a comment she made in my direction....It turned out she was actually making a joke to the cat on the couch over my shoulder! And that's the way she was--quick witted and always making everyone in the room laugh. I never talked to her without coming away feeling a little better about my problems. I am so glad Connor was able to know her, even if just for a little while. I am sure there was a crowd of people waiting for her on the other side with big smiles on their faces, and I know someday she'll do the same for us.

The Sword (in my back) and the Stone

2008-10-01T15:09:00.005-04:00

It seems like we have one "big" adventure every month - sometimes good and sometimes bad. Well Tuesday was that day. I was taking the missionaries in to the mission home for transfers, and Connor and I thought we'd go on over to the zoo to wait for them since it is so close. So we saw Connor's "must-see", the monkeys, and then #2,the rhinos. He even got to take his very first carousel ride. Afterwards, he heard the train whistle and insisted on riding the train on the way out. Since I also particulary enjoy the train, we made a little stop. While on the ride I was leaned over a little to hold onto his sides in the seat, and my back started to hurt. I thought it must just be from leaning over and it would stop when we got off the train.

Well, it didn't. And it got worse. And then I spent the next 20 minutes, including the drive back to the mission home, trying to convince myself I did not have another kidney stone. But, anyone who has had one knows that the pain will quickly convice you otherwise. By the time we got there I was in enough pain I was breathing heavier and I kept getting hot then cold. So I called Adam to come get me and tried to get a hold of my mom to come get Connor. I had to just sit in my van and wait for them, and unfortunately (for me at the time) there were about a hundred super friendly, chatty missionaries milling about that all wanted to talk to me about what was going on...which was the very last thing I wanted to do. They were helpful and tried to give me suggestions, and finally most of them went away. I thought I might actually be able to suffer in peace then, until suddenly this big group came walking down all together from the mission home. I recognized an elder that once served in our ward and he came up to me first and said, "Sister DeLuca, I have some missionaries here that would like to give you a blessing."

And they did--right there in my van. Then Jeremy Call, my new hero, came over to entertain Connor with his magical cell phone. About 20 minutes later, I felt the stone move and the pain dulled to a minor ache. I later found out those missionaries that did the blessing were all about to go home, including one returning to Albania. Sister Knight (my now new best friend from the mission home) said missionaries about to return home are just full of the Spirit and completely in tune. It must be true because they blessed me that the pain would subside, and that is exactly what happened--and fast.

No more Sprite for me. :(

Another Accountant in the Family

2008-09-29T22:53:00.003-04:00

So today, Connor totally blew me away. I mean, some days he gives me a surprise kiss on the cheek and that is really nice, but this was earth-shattering. He woke up from his nap, and in his usual pattern he started to tell me about everything he saw and everything he remembered that happened before his nap...in his little short 25 month old sentences. So then he sees a business card on the floor (one of our collection of doctor's cards), which he immediately identifies as a "blue coupon." So I tell him it is a card and that there are more on the counter but that one just fell off. So then he looks up at the counter and says, "Other coupons. One, Two, Three, Four, Five." I couldn't believe it!! Of course I've been counting things to him as long as I can remember, and I knew he could identify that there were up to three of something, but I had no idea he had all that memorized and could count in order! So I immediately call his dad to tell him what a genius child we have, and while I'm rehearsing the story I get to the part where I'm describing his counting and as I get to "five" he yells to me, "Six!" from across the room.

I guess it makes sense because Adam is a math genius (cause you know he didn't get it from me who cannot add basic numbers without a calculator) and an accountant, so I suppose it's just like father like son. But seriously...I don't know why Ernst & Young hasn't called for Connor yet.

A New Halloween

2008-09-26T09:00:00.004-04:00

We are now in the process of trying to decide what Connor should be for Halloween. I think this is the last year where I really have the choice, so I guess we should make it good. I was looking back through old pictures, and I saw the pictures of Connor from last Halloween. His "Gram" (my mom) has decided it is her job to furnish the Halloween costumes, and last year we got a good one--he was a cute little monkey. But it still seems so strange to look at the pictures now, because in those pictures he is actually standing up. It wasn't until closer to Christmas last year that we started noticing a problem. And now I can hardly remember him walking. Some days I want to delete all these pictures and never remember our life before we knew what the rest of his life would be like. But fortunately, his little face is so cute I just don't have the heart to do it. And sometimes I wonder if he'll ever want to see these, or will that just make it harder for him? Sometimes I really am clueless about how to handle everything. I was really just hoping to reach "An Okay Mom" status before all this, and now I'm not sure I even know what that is. What a blessing it is that it takes awhile for our kids to figure out that we're not perfect...it gives us just a little more time to try to at least look like we know what we're doing.

Results from the Final Frontier

2008-09-24T14:00:00.004-04:00

Yesterday we drove Connor up to Cincinnati Children's Hospital to see the team of specialists there. This was our last effort at finding anybody "local" (an hour and a half away) to treat him. We have seen specialists here in Louisville, but since SMA is a rare disease, it is hard to find doctors that have true experience with these kids and aren't just making their best medical guess based on something they went back and read in an old textbook. We'd been referred to Cincy Children's by quite a few SMA families, so we had our fingers crossed.

And it really was a great experience. Days before we even came, the "nurse concierge" called us several times to make sure everything was done and ready for our visit and to answer any questions we had. They sent us about 3 different maps to get there, and a welcome letter, and info specifically on our specialists. We got there at 1:00, and left at 5:30 having only seen two (neurology and physical therapy) of the three people we were supposed to see. That sounds bad, but the reason is that they were very thorough with us and just spent tons of time with us going over things and answering any questions we had. In the waiting room there were tons of toys and people to just play with your child (no joke--I think they were students)...so we could sit and relax for a few minutes. Then they had a toy cart with lots of toys in the hallway by the rooms so you could keep your child happy.

Neurology was great--Dr. Wong has seen lots and lots of SMA kids and told us "the type 1s usually react this way to this, but the type 3s do better with this." Physical Therapy made some great suggestions on his walking, and said with this specific adjustment to his braces they have seen some type 2 kids walk that never walked before--sooooooo exciting. Connor did walk and can with his braces now, but with this new part they said he would hopefully be able to stand alone without the walker. The third specialist, nutrition, is going to call us on the phone, and they are going to do some more labs and x-rays that they're going to let us complete here in Louisville and have sent up. Halfway through the appointment, Adam looked at me and said, "Well, I think we've found our new doctor" and I truly agree.

The only downside is that they suggested a power wheelchair for him, instead of a manual, so we are just back to the drawing board on that. But I guess we'll figure it out somehow--just like all the rest of this!

A Pirate & My Other Car is a Jeep

2008-09-21T17:19:00.010-04:00

This past Wednesday was our weekly storytime at the library. It was pirate week so all the kids got to dress up in costume. Due to our Ike windstorm, most of the public schools in Jefferson County were out of school for a week so we were pleased to have Aunt Jenna accompany us. Connor bestowed upon her the special honor of wearing the free hat they gave us, since he already had his own.

I have to say that I truly love the library here. The children's librarian is absolutely wonderful with Connor, and has made us feel really at ease there even though he's not able to move around like the other toddlers. We read pirate books, pinned the eye patch on the pirate, and made a bag of gold...which unfortunately involved glitter (which I don't particularly care for) so Aunt Jenna stepped in and saved the day.

On Saturday, we had yet another person look at our house (still crossing our fingers), and afterwards just wanted to relax a little, so we took Connor out back for a ride in his "other" car, which he refers to as his "jeep." The tricycle is great for rides in the park because it folds up and mom can control where he goes, but with his jeep he's free to roam...with daddy trailing behind.

"The Call"

2008-09-18T16:13:00.003-04:00

Today we got some very interesting news that made my heart skip a beat. As many of you know, we have been trying to make a decision about whether or not to enroll Connor in a drug study at Washington University in St. Louis. The theory is that this drug would help stimulate the gene that "backs up" the gene he is missing to produce the protein the cells in his spine need. The drug was FDA approved for sickle-cell disease, and didn't have any dramatic known side effects besides the fact it sometimes makes people smell fishy. Our dilemma was that it has a horrible, horrible taste and he was going to have to take it with very little to disguise it, every 8 hours for about 3 months. That means waking up in the middle of the night to put something nasty in his mouth, and then trying to get my 2 year-old to go back to sleep peacefully. (Riiiiiiiiight.) And then there were the 8 or so 5-hour (one-way) trips we would have to make to St. Louis in that time period.

In short, it was really a dilemma. On one hand it all sounded like 3 months of horrible days, and on the other you wonder if you are keeping your baby from one of the few possibilities you have that might actually help him a little bit retain some of what he still has. We had prayed and prayed and talked to everyone we knew and still come to no conclusion. We finally decided to see one more doctor next Tuesday and then we would make a final decision.

Then today, I got "the call." I expected it to be the call from St. Louis saying now that Connor was two, a slot was open for him in the study and we needed to get there as soon as possible. I had been expecting that call for a week or two. But what they actually told me was quite different. The therapist there said they received an email from the drug maker that they were closing the study to SMA Type 2 and 3 patients because those patients were having so many adverse reactions.

I hung up the phone and my first reaction was relief--now after two months of worrying about this the decision was taken away from us and we didn't have to even decide at all!! Then I thought about how it was sad this option was taken from us, but hopefully there would be more, and better safe than sorry. And then the "sorry" started to really sink in deep, and I realized just how close we might have been to doing something to our little boy.

Sometimes all this SMA stuff really sucks--a lot. What might really help just happens to be the same thing as what might really hurt. So you can do nothing or you just have to gamble with your child's health. How incredibly grateful we are that we have the Holy Ghost to guide us. We would never take any chance without a firm answer that it was the right step for Connor, and how grateful we are today that no answer ever came.

Ike Strikes...Kentucky?

2008-09-15T10:54:00.003-04:00

Sunday was a strange, strange day for us. We walked out the door to go to church and thought we would get blown away. The day was right out of Mary Poppins--you know, the scene--"Winds in the east...mist comin' in...like somethin' is brewin'...about to begin..." Well that was the strange part--nothing ever came, not a bit of rain. But that horrible, strong, strong wind never died down, not until about 8:00 that night. And by the time it did, 60% of Louisville and the surrounding area was without power. While we were at church, a branch fell on cars in the parking lot and the roof came off the building next to us--no tornadoes, just from wind. We go to church just on the other side of our little suburb city of Shelbyville and it usually take us about 10 minutes to get there, only because of the stoplights every block. But coming home took us about 45 minutes because there was tree after tree across the main four-lane road. And this poor tree fell down into our very own front yard. Luckily we and all our property were safe. And, Louisville's "up to 75 mph winds" made the national news!

Sweet New Ride

2008-09-13T16:28:00.006-04:00

Yesterday, Connor and I took a little trip to Sams Club. We were supposed to be getting just milk, bacon, and these tasty Healthy Choice Cafe Steamers (which sadly btw Alyssa are NOT $6). But, of course you cannot walk out of Sams without spending at least $50, and we certainly did not make that escape yesterday either.

So I walk in the front door and what do I see? This! A bright red, black, and yellow tricycle! Connor immediately starts yelling, "Bike! Bike! Get bike! Buy bike! In cart! Get bike! Bike!" (Continue that on for about 5 minutes.)

Why, do you ask, am I, a supposedly grown-up adult-type person so excited about this strange little tricycle? Because this is the most SMA-friendly bike I have ever seen! It has a button to disengage the front pedals so you don't actually have to push them (because he really can't) foot pedals that flip down where he can rest his feet (he can do that), side supports that pivot from the back to wrap around him and snap together in front of him to give him lateral support (a must have), a seat that curves up a little in the back to give lower-back support, a mom-push handle that can actually turn the front wheel, and a mommy foot brake that will lock the back wheel. Plus, its theme is the Disney Cars movie and it makes cool noises.

I think everyone in Sams thought I was a crazy woman that I was on the verge of tears over a Disney tricycle, but I just never really thought he would be able to use anything like a bike! We are so excited!!

Cousin Friends

2008-09-10T13:25:00.008-04:00

A month or so after we told the family we were pregnant with Connor, Adam's sister, Beth announced she was pregnant, too. (Actually, I found out Beth was pregnant when one of her boys asked if the baby in her belly wanted a snack in church.) We soon found out that we would be having a boy, and after two boys, Beth's family would now be having a girl.

As well as being his cousin, Elsie is one of Connor's very favorite friends. Any day that involves Elsie is happier, and anything Elsie does makes that thing that much cooler. When Connor saw Elsie wearing a necklace, he insisted on putting everything he could find around his neck. And when he actually did find a sparkly, purple, beaded necklace in an old hatbox he demanded he be able to wear it to Wal-mart. Unfortunately, we somehow "lost" it in the van before we got there.

Connor also thinks everything Elsie says is "cool." He had been calling Elmo "Jo-Jo"(with a very cute high-pitched voice) for as long as I could remember, until one day he went and played with an Elmo toy at Elsie's house. Then the next day all of the sudden it was "Elmo" and "Jo-Jo" was no more. (I was pretty sad about that one.)

And most recently, I had been trying (please don't ask me why because I don't know why it is important) to get Connor to say the "sss" sound at the end of"ice" for a month or two, but he just wouldn't do it. So Elsie came over to play and said "ice" once and then of course Connor was perfect at it from then on.

Family is always a blessing and we feel grateful to have so much family so close to us who love and support us. But we feel especially blessed that we have family that we can truly call our friends.

Plantation Vacation

2008-09-04T15:13:00.015-04:00

This last week we took a little trip to see some old friends of ours, the Genhos. They live on a large ranch/farm that sits next to the Shenandoah National Park in Virginia, so it is acres and acres of rolling green hills, with bursts of forest here and there. They have goats, chickens, mules, horses, and lots and lots of cattle. (Connor still asks me to "see goats" every day.) It was just what Adam and I needed to relax after the last six months we've been through.

The main house on the property is an old plantation home. I tried to tell Adam how big it was, but he was still amazed when we got there...and I have to admit so was I. It is rumored that Colonel Slaughter still haunts the house and left a treasure somewhere. Unfortunately, we left with no ghost stories or treasure, but with a lot of great memories.

While we were there we got a chance to run up to Washington, D.C. a see a few of the sites. Somehow, despite drizzly weather, we still managed to have a great time. I guess it matters most who you're with.

One of Connor's favorite memories was definitely canning peaches with "Wemmie." I woke up from an afternoon nap to find Connor sitting on Lynnie's counter top, stirring a pot of water and "helping" her can some peaches. He was covered in stickiness, but blissfully happy. Though I thought Adam would never stray from his precious strawberry jam, Lynnie's tasty peach jam made him a believer that there might just be more out there. The fact that there was homemade wheat bread, scones, and biscuits to smother in it didn't hurt too much either.

While we were there, Connor also had his second birthday. I was afraid he might decide he needed cake at every family gathering after that since he had just about had it by that point, with that already being his third birthday party. But luckily so far he only starts saying, "Cake! Cake!" when anyone makes the mistake of saying the word "birthday" aloud. This was our little party.

Lynnie and Ava made some tasty "pupcakes" (Connor's new word). Somehow Connor decided that he needed to bring his mouth to the "pupcake" instead of the other way around. Luckily, he cleans up easy.

We had a great time in Virginia and love the Genhos even more that before, and hopefully we'll get too see them again soon!

Equipment Jungle

2008-08-12T14:38:00.001-04:00

As many of you know, we are in the process of trying to sell our house. We realize this may not be the most advantageous time for that, but we're still trying. The reasons for doing so are that gas is ridiculously expensive and commuting from Shelbyville to Louisville has gotten out of control for Adam, it is costing a lot for Connor and I to run back and forth for doctor's visits, etc., and finally that our little house is rapidly developing into an equipment jungle. Connor now has a therapy bench, therapy bands, gloves with wrist weights, short leg braces, long leg braces, a walker (aka his "car"), a mobile stander (aka his "truck"), a loaner wheelchair, arm crutches, and an exercise therapy ball. Unfortunately that larger equipment does not fold up so it just kind of hangs out in our living room a bit so we don't trip over it in his room in the night. It's not really working out for us right now. And the sad part is we are only going to get more from here...so we are looking for a house with a basement for storage.

The good news is that Connor is amazing in his mobile stander. (In case you don't know what a mobile stander is, it is basically a stand-up wheelchair. It kind of looks like chariot that he is strapped in to where he propels the wheels himself.) I took him to the library the other day and the children's librarian was totally amazed that kid who wasn't even 2 yet could maneuver it like he did. And that isn't even something we really taught him--you can't teach him much of it at that age. He just figured it out with a little practice. This disease doesn't affect his brain at all and that child is as smart as can be.

When It's Okay to Punch People in the Face

2008-07-16T14:26:00.001-04:00

So sometimes Adam and I have these little phrases we get stuck on that we say a lot. I guess they are just like "inside jokes" between friends. And our most recent phrase is "punch you in the face." For Adam--funny guy's guy, athlete, pal, jokester--this is no problem. He says, "If you don't pick that up, I'm gonna punch you in the face" and it seems a little extreme and everybody laughs and he is just silly Adam. But when I say it, people look at me as if I have suddenly gone mad. It is just too far across that line of appropriateness for a "mother" to say I suppose, so now I guess I am doomed to boringness and smiling at my husband while he says all the funny things.

However, there are a few times when the general public might just salute a mother for punching someone in the face. For instance, a few weeks ago, we took Connor to Shriner's Hospital in Lexington. I wanted to find out if there was any additional equipment out there I didn't know about that might help him...maybe some type of wheelchair, or walker, or brace that might be helpful to him. I was thinking, "Hey, this is Shriner's Hospital. They are here specifically to help the "crippled" children. Maybe they know about something I don't." So after waiting for the doctor for 2 1/2 hours we finally see him, and I explain our whole story and what I am looking for and what does he say to me? He says that with these kids with this disease sometimes we need to "adjust our expectations" of what they are going to be able to do.

I almost had to look around to see if he was really talking to me. Was I asking for a miracle cure? Had I not been living with this diagnosis for months now? I was trying to be so practical and realistic about what might help my child, and he had to say something so negative and demeaning. I am sure he thought he was helping me face some reality, but I was so many levels past that is just wasn't even relevant or helpful--so much to the point it was quite rude.

Now you ask, was I mad enough to punch him in the face? Why yes, of course. Would it have been acceptable? If I surveyed the general public, I think even despite my "mom" status, I might have been able in that circumstance to get by with a punch in the face--especially after our long wait that he had put us and everyone else through, along with the fact that I also know I am not the first SMA family he has said that same thing to. And if not a punch, maybe just a smart slap.

But alas, I did not punch, nor did I slap. I just talk quickly with an agitated tone until I calmed down enough to talk evenly and make sense again. However, I do think maybe some people could use a good punch once in awhile--just to knock the sense back into them.

Ding! Round One--Me.

The Secret Blog and a Poop Story for Sheryll

2008-06-26T10:42:00.000-04:00

So Sheryll calls me up and tells me to get a blog. That sort of sounds like "get a life", which I really shouldn't be offended by, because there are a lot of way in which I really do need to get a life, and Sheryll is one of those rare friends that I you can talk to after not talking to forever and it is like you've only been apart for minutes. Things just fall back into their comfortable places and you're laughing and smiling in no time. So her "get a blog/life" didn't offend me in the least. And I had to tell her about this--my secret blog. Yes, I know what you're thinking...who on earth has a blog that no one reads? Yup, that's me. And then I had to tell her that well, it is pretty much just a bunch of depressing stuff about my now depressing life. So she gave me a one week deadline to make revisions to make it ok for other people to read, and then I had to send her the link.

So, I thought and thought about what to change, and read it (and cried about it all again), and then I just decided that it may all be depressing, but it is all exactly true, and it is all my life it complete honesty, and I just don't want to change it, and I'm not going to cause she's not the boss of me. :)

However, in order to spice things up a little and in an attempt to make things a little happier for Sheryll, I will now add a story about poop and a fish for Sheryll.

So this week Jenna and I took Connor to the zoo. One of my very least places at the zoo is the penguin room in the "Islands" exhibit. First of all, when you get within like 100 feet of the room you can smell the room because they totally reek. And they put them in this tiny room with rushing water that is really loud, and though they are tiny little birds they can squawk sooo loud. I don't like any bird exhibits in general because as a child at the zoo I had a "bad experience." (My mom made me sit on this bench under a tree to wait for her and a bird in the tree pooped on my face. True story.) So of course Jenna insists on seeing them.

So I slowly push the stroller into the double doors that are the entrance to the penguin room. I am overcome by the rush of stinkiness and when I open my eyes, I see that only one other family is in the room with us, and then there is some zookeeper woman standing inside the exhibit feeding fish to the penguins, making them squawk extra special loud. All the penguins seem to be waddling their way toward her in a creepy sort of way. And there is this weird eerie
lighting in the room that I swear was straight out of an Alfred Hitchcock movie. So Jenna turns to me and says, "It's too bad penguins can't fly." And I look at her and say,"Penguins can't fly?" and right at that moment I guess something ticked them off--maybe we insulted them?--because all the sudden they all took off and started flying out of the exhibit and all around room (which did not have a high ceiling, I might add). So of course my first thought is,"Oh my gosh, me and my baby are gonna get pooped on by a penguin!" So I start screaming and running for the door across the room. We get there and not only is it locked, but it is chained--not joking--padlocked and chained--closed. So, still screaming, I turn the strolling around and go running back for the other door with penguins swooping around my head. And then, just as I get up the the other door, I look up and see this penguin with a big fish in his mouth perched on a rock just above the door. And I look at him and he looks at me and I know he is just waiting to throw that thing at me. And just when I make up my mind that a fish is better that poop and I am ready to make a break through the door, this little girl opens the door and takes a step through. And sure enough, that penguin chucks the fish right down on her.

I escaped with my life, and without any poop on me, Jenna, or Connor, but I am totally never going back there again.

Night Swimming

2008-05-02T22:52:00.000-04:00

Tonight I have some sort of cold, and whether it is the congestion or sore throat--I can't sleep. I'd really like to blame it on that, but I think the real reason is what keeps waking me up around 1:00 am every night...I just can't stop thinking about Connor. I wake up and think "Oh, I need to call this doctor" or " I need to request this paper" or "Should I be investigating that treatment more? Who can I talk to about it??"

I have recently talked to some other parents via chat groups about SMA stuff in general. I think it has been helpful in one important way. It kind of makes what we are going through and feeling seem more "normal." I'm not sure if I am supposed to want to feel that way, but I do. Maybe it is something left over from my teenage years, where we all seek to fit in. Hmmm... I think it probably has more to do with the fact that our whole world has changed.

Speaking of that, I found this incredible poem on a website:
Welcome to Holland
http://www.fsma.org/FSMACommunity/DailyLife/parenting/

I think this helped with the whole "feeling normal" thing as well, because it really described exactly what we have been going through, and it kind of opened my eyes to the fact that lots and lots of people go through this whose children don't even have SMA.

The other reason I am thinking about Connor is because he has this cold, too. Unfortunately, what sticks out in most of what I have read is that children don't die of SMA, they die of some sort of infection they are not able to fight off because their muscles are too weak. I know Connor could be much, much worse than he is now...but still whenever he coughs I could swear my heart freezes mid-beat as I am paralyzed in fear that this is the beginning of the end, until the millisecond passes and my normal thump-thump returns as I tell myself, "It's just one cough...It's just one cough."

We do have one bit of good news. A couple of days ago we put the big braces on Connor--the ones that go from his feet, have the drop-locks at the knees, and wrap around his thighs. With those on, the locks locked, and the walker, we actually saw our baby stand again. Adam and I were both shocked at how tall our little boy was. Who knew? He was so excited to stand up, too. I know he wants to walk so bad.

It makes me mad at myself and everyone else who said before he was diagnosed that maybe he was just "too scared" to walk. I am feeling a lot of guilt these days. I am pretty sure that when he was walking, he fell down a lot more than other kids...but I just didn't know. He is our first, and I just had nothing to compare him to. I think when I finally did compare him to other kids, I was well on my way of realizing there was something wrong...I saw how fast other kids moved--just a simple swipe of the arm, or jumping up to go somewhere else, and I knew my baby had never and could never do that. But at that point it just added to all the other puzzle pieces that would eventually become our SMA.

But, guilt or not, I am starting to recognize some of the lovely parts of Holland, and I think once we get used to the scenery, we're going to like it here.

Miniscule Milestone & Optional Baby

2008-04-21T13:40:00.002-04:00

Today I hit a big milestone. The physical therapist came this morning, and after she left I didn't cry one tear! Usually, after any kind of therapy or doctor's appointment, I cry for a brief few minutes or a longer period of time, depending on what I was doing. Today, I have pretty much been home all day and not one tear has been shed.

Unfortunately, I cannot guarantee the crying won't happen later. Friday was really hard for some reason. When I finally got a hold of Adam to talk to him about it, he told me to get a movie so I would stop thinking about everything. So I ran out and rented "The Waitress." I don't know if you have seen this movie, but through almost all of it the main character is pregnant. So I'm sitting there watching this movie, trying not to think about anything sad, and I see the main character holding her new baby and start wondering, "Will I ever be pregnant again?" Totally not helpful to the whole try-to-keep-from-being-emotional thing.

I'll explain a little...A week or so ago we went and talked to a geneticist about Connor's disease. I have to admit I was a little bothered...I guess they expected us to be all completely heartbroken and totally uninformed about what was wrong with him. They kept asking us what we wanted to know about the disease, and I am staring at our "genetic counselor" wondering if she really doesn't realize that it took us a month and a half to get in to see her and we haven't just been sitting around the whole time crying about something we didn't understand. She had some info for us--printed sheets from a website I have already thoroughly researched, and a pamphlet from a foundation set up by parents of a little girl who died from SMA. You'd think the pamphlet would be helpful, but nope--it sure wasn't. They were obviously looking to scare people into feeling so horrible about SMA that they would donate, but it wasn't exactly helpful to parents trying to stay positive about the whole thing.

The only good thing I will say that came out of the meeting was info about our options for having another child.
Option 1: Keep Trying Til You Get It Right
This options means we get pregnant and abort babies until we get one that doesn't test positive for having SMA. Really this is out of the question for us.
Option 2: Give It Your Best Shot
We just get pregnant and hope the odds are actually in our favor this time.
Option 3: Read the End of the Book First
Also called PreImplantation Genetic Determination, or PGD. It's pretty much In Vitro Fertilization, but they pick an egg and sperm that won't give the baby SMA. About $15,000 for the IVF, and an extra $5,000 for the egg/sperm determining. And of course our insurance gives us no coverage for IVF. Also, there is only about a 20-30% chance the embryo will implant...so it could be a total waste of money, time, etc.
Option 4: Find a Greener Pasture
Adopt.
Option 5: Phone a Friend
Get a sperm/egg donor, and use only one sperm/egg from us. Ok, so I hope this doesn't offend anyone, but this totally creeped me out. I guess I should be more open to all this, but it is just the idea of the baby being partly one of us and partly some stranger is just really, well, strange. And surely that would involve some IVF.

So what are we supposed to do? The occupational therapist (OT) said something later about maybe getting sperm/egg from a sibling of ours...okay, that was TOTALLY creepy...so the baby would have us as parents but then have a mom/aunt or dad/uncle? How do you explain that to them? I just gave the OT a polite smile and "Hmmm."

Definitely more to think about...seems like we are learning about more every day.

Diagnosis of a Season

2008-03-26T11:23:00.001-04:00

So I guess the season of our life changed a little recently. As many people now know, earlier this month our son was diagnosed with Spinal Muscular Atrophy. This disease causes his muscles to progressively weaken and weaken to the point where they are finally useless. The neurologist and pediatrician believe he has Type III, which hopefully means he will have a typical life expectancy.

Learning of this was really difficult, as I'm sure you could expect. Adam and I cried in the doctor's office, and I cried in the parking garage, and at home, and during family prayer, and at bedtime, and have I woke up and started crying at random times in the middle of the night. I cry for all the things our sweet boy will not be able to do...for the missed soccer games and the games of tag, that he won't serve a normal mission, for the frustration he'll have with a body that won't do what he's asking of it, and for all the difficult questions our baby will one day ask that we're not sure just yet how to answer...will he date? will he marry? will he have children? why am i different? am i going to die? We cry as we watch him now struggle with the feet he drags behind him and as he sits on the floor in nursery to eat snack while all the other kids sit at the table. Will he always be excluded in some way? Will there be friends he won't have? Birthday parties he won't be invited to? Will people be mean to our baby for something he could not possibly have helped? We cry inside each time he coughs and wonder "Is that a normal cough, or is it getting worse? Is this the first sign of a problem?" And we cry that life seems so backwards...that two people so in love--so much more than even when we met--could unknowingly pass on a gene that would do this to the one other person they love most in the world. And this crying is in our hearts, as we ache for our little boy.

And yet, the mercy of it all is that all that is just in our hearts. Our minds know better. We know that our baby is the light of every room he's in, and there will always be people who love him. He is a magnet for smiles, and will always be. We know that we have been blessed with incredible health care professionals who are already watching out for him and helping him achieve more and more. And we know that we are all dying, but life is not about that--it is about living. And we know that our Father in Heaven wanted our baby to live with this disease, and us as his family to work through what comes our way as a result of it. And Adam and I know of the love and support of our family and friends that have been poured upon us as more and more hear of this disease.

So then, when we merge that heart and mind together, we realize that in this season we have a choice. We can live our lives crying for what can't be done, or we can love living. So Adam and I have decided that even if we have good days and bad days, we will teach our son to love living life. Because a wonderful life is what his will be.

How Things Change

2008-03-26T11:08:00.000-04:00

So I decided to do this cause I guess it is sort of a modern day "journal" entry. Apparently, we are all supposed to be writing in journals, so I hope this counts. I was a GREAT journal writer until I got married, and then suddenly my life got so much more complicated with things and responsibilities that journal writing just took a back seat. (I'm sure many people can relate.) So, here goes my shot at starting again. We'll see how this works.

I decided to call this "seasons" because I was once in a lecture at BYU where my professor's wife was guest-lecturing and she talked about this topic. She was, like her husband, a well-respected professor and researcher in the field of communicative disorders, but her lecture that day was more about our lives and less about our professions. I was very impressed with her and the balance she achieved between work and family, and how she incorporated the gospel into all of it. She talked about the seasons of our world and said sometimes we wish it was spring, but there are reasons for us not to be in spring just then, and someday spring will come again. And so go our lives...sometimes we are not exactly where we want to be in our lives--whether figuratively or literally--but there are reasons for us being there that we often do not know. We should not wish to be somewhere else, but instead make the best of where we are and know that we will eventually get where we want to be.