We have spent a lot of time at Lurie Children's Hospital. When Dan was working on the new hospital before it opened (Luke was 1 1/2 and I was pregnant with Jack), he said, "It's the most amazing place I hope we never have to go." If my life were a book or a movie I'd say the author was utilizing a literary technique called foreshadowing.
In the weeks and months that followed, Jack missed gross motor milestones; he would start weekly physical therapy sessions, consult with speech therapists and have scopes done in conjunction with ENT for feeding issues which determined he was at risk of aspirating, be put on Prevacid for "silent reflux" (WTF?), and ultimately end up being evaluated by a neurologist.
Let me tell you how it feels to be told your child, your personal miracle, should see a neurologist.
Heart. Breaking.
Earth. Shattering.
Jack has been diagnosed with hypotonia. It's more of a condition than a disease. It's a fancy term for low muscle tone, muscle tone meaning "the amount of tension or resistance to stretch in a muscle." The neurologist actually said, "He's just a little floppy and will probably outgrow it," while at the same time running THOUSANDS of dollars worth of tests, some of which were sent to Mayo Clinic.
EVERY single medical professional including a few who are also "framily" (friends who are family) has told us, "He'll be fine. He's okay." While I trust them all, as Jack's mama it's hard to believe. A kid who isn't expected to walk until he's 18-24 months old does not seem "okay" and "fine" to me.
But, in the long run as long as nothing else is actually wrong, it is accurate to say that Jack will be fine. He may never be a professional athlete. He may not learn to ride a bike until he's 7. He'll probably have poor handwriting. But eventually he will walk and talk and to the passive bystander he will look no different than the other kids.
I actually think Luke may be on the low average side of muscle tone. He sat up and walked on the late side of typical, doesn't articulate as clearly as others his age, and certainly falls down more than other kids. Dan also thinks Luke isn't super athletic.
While I was at my own physical therapy yesterday (for issues I have related to delivering my two miracles) I asked the PT if she thought I had low tone. Her response was, "It's possible. Your muscles certainly don't activate quickly." Huh. Well there it is. I knew it wasn't genetic from Dan. While he may not currently be in the best shape of his life he used to be a semi-pro baseball player. My father (a minor league ball player) described Dan's athleticism and skill by saying, "He just has an instinct. He knows where the ball is going and he's there." I now realize Dan has some sort of freaky weird muscle memory and high tone that reacts much quicker than the other 3 members of our family. Sorry L & J. My bad.
It was recently suggested to me by someone in Dan's family that "we don't know what it's like to struggle." I can't tell you how offended I was by this comment. To say the wheels came off the bus and I went ballistic cuckoo for cocoa puffs would be an understatement. My child is seeing a neurologist. And even if he weren't, EVERYONE struggles. What an ignorant thought.
Nevertheless, I want to make it very clear that I understand completely there are other kids and parents who are in far worse predicaments than we are with Jack. I do not for one minute want to compare us to someone who's watching their child fight a potentially fatal disease or illness or to anyone who's been told their child has autism.
But as a parent you want/hope/beg/plead/pray to God that your child will be perfectly healthy. Anything less than that is gut-wrenching.
So for now we will continue weekly PT and most likely start speech therapy within a few months (late walkers tend to be late talkers). I will also continue to pray that my baby is not in any pain and that he will be a happy little guy. Just like this...
For this child I prayed, and the Lord answered my prayer.
1 Samuel 1:27
No comments:
Post a Comment