Friday, January 21, 2011
The Journey Continues
Hmm. I'm sitting with my laptop in my lap, a cup of coffee sitting next to me, and the sound of Logan settling down for his nap while I read my previous blog. I am somewhat of a perfectionist and could edit the blog all day long, but instead I am reading it as if it's somebody else's entry. Reading it in this way, I don't care what grammar errors there may be or if there are run-on sentences (which I'm the queen of!). Instead the words are sinking in and affecting me and making me anxious for the next entry! It brings me back to the days of wondering why. Why is my perfect son Logan, not quite doing what he's supposed to do? Hmmm. It's heart-breaking to read, but encouraging to realize how far we really have come with him.
Yesterday's entry left off with Logan cruising around the living room, but not letting go and taking that anxiously awaited first step. Shortly after his evaluation with the children's therapy center, Logan turns 18 months old, and is holding onto the overstuffed chair in our living room watching me as I sit on the floor with his favorite book. He suddenly gets a big smile on his face, lets go of the chair, and walks right over to Mommy! I was so excited! I couldn't believe Logan has finally taken his first steps! I gave Logan the biggest bear hug ever and sent him on his way back to the chair to try again. When Daddy gets home, we get it on video that Logan will walk from Mommy to Daddy, on those chubby, wobbly lil legs of his. I could barely watch the video because my eyes were so filled with tears of joy. I can't even explain how proud of him I was at that moment.
Logan continues to make progress with the help of the therapists, and of course the help of Mommy & Daddy, and grandparents, and aunties. He is surrounded by people who just adore him and he is spoiled with attention and affection! We celebrate every single thing he learns and continue to have patience in the things he struggles with. In the back of my mind though, is that annoying word: WHY?
Logan turns 2 in the summer of 2010. He gets a big, fun, Dr. Seuss themed birthday party. Mommy chose Dr. Seuss because Logan's favorite toy in the whole world is a good book! He has lots of friends and family at his party, and he gets to eat some yummy cake! When it's time to open the presents Logan is very overwhelmed though, with all the people watching him and clapping for the new toys he receives. He is miserable and ends up wanting to just cuddle with Mommy for a little bit after everyone leaves.
A little more than 2 weeks after Logan's birthday party, on August 17, 2010 I receive a phone call from a doctor we had taken Logan to at the end of July. The doctor had drawn some blood to send for testing, because we were all still trying to figure out why Logan needed these therapies and extra help. When my phone rang, I was in the car with Michael and Logan and was slightly distracted when I answered. The doctor said he received the results back from the blood test, and had some news. I tuned everything else out except for the words the doctor were saying now. I expected him to say they hadn't found anything, but I will never, EVER forget the words he said instead. He said Logan tested positive for something called Fragile X Syndrome. Hmmm. I thought back to my late nights of surfing the internet for answers, and vaguely remember running across info on Fragile X. I remember I had quickly dismissed it, as it said it was a genetic syndrome, and we didn't have any family history of it. I was confused. "How could he have Fragile X if it doesn't run in the family?" I asked the doctor. He said "Well, I'm not sure but I would like you to come have your blood tested." "Why me?" I ask him. He says that since Logan is a boy, and this syndrome is a mutation of the x-chromosome, it could have only come from me. The father doesn't pass an x-chromosome to a boy, only the mom does. Wow. Was all I could say. I was in shock that we had actually gotten an answer to my constant WHY? But now I wasn't so sure I wanted the answer afterall. Michael and I try looking up what we can about this strange new word: Fragile X Syndrome. We're not at home though, and using our cell phones proves to be more frustrating than anything else. We decide to go to the local library and just check out some books on it.
We realize just how difficult it's going to be find out about Fragile X Syndrome when the only 2 books the library carries about this syndrome were checked out and never returned 4 years ago. I was shocked. "You mean nobody else has asked about these books in 4 years?" I ask the librarian. "No, sorry we'll just order some new ones for you guys." Hmmm. No wonder I've never really heard of this. It seems nobody else in the world really has either.
Little did I know how much these words "Fragile X Syndrome" were going to affect not only Logan's and Mommy & Daddy's life, but the lives of our entire extended families as well....