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.
Sunday, January 24, 2010
Reindeer Food
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.
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.
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.
Friday, January 1, 2010
Girls Weekend!!!
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.
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.
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