Plantation Vacation

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

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

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

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.