Two weeks have passed since I last wrote. I've been waiting, hoping I could move past my current thoughts without putting them into print. It's summer. Time for pools, and boats, and concerts on the lawn. Discussions pertaining to neuromuscular disorders rank low on my list of fun.
But I can't get to fun till I write reality.
After three and half years of odd legs and wobble walking, a test finally brought clarity to years of confusion. A pediatric neurologist listened to my concerns about Sam's shoulder, ankle, and knee pain in early March. He saw the similarity between my son's issues and mine and requested an EMG for both of us. That EMG took place on June 11th and as a result, it's clear that my walking issues are a byproduct of degenerative, shrinking, unhealthy muscles. And I haven't even turned forty like most of my Douglas County High graduate friends.
I waited a week and called the pediatric doc and was finally able to ask a few more questions today. His answers made me feel better about Sam's current challenges. They're real, but mild.
But he was quick to point out I'm a mess. I agreed. It's totally clear. Ask those who know me best. I am a mess.
We sent Sam's lab work to a genetic testing facility this week. Those tests will be complete on July 10th. The tests will verify if we have a certain type of muscular dystrophy. It's a good type to have. No lung or heart issues normally. But weak facial muscles could explain why my eyes are so dried out... as the weakness progresses, eyelids don't stay closed at night. My family can't wait to find out if I sleep with my eyes open. Creepy.
As I packed for the beach, trying to process the information, I realized I felt like I did the day I learned the Easter Bunny, Santa Clause, and the Tooth Fairy weren't real. It was quite a blow. My seven year old self didn't want to face reality way back when and my thirty-nine year old self is fighting it a little even now.
It's just a lot to take in... which is why Don consoled me last week by assuring me that the Easter Bunny is real.
The good news is, the Great Big God of the Universe is very much real. And while I don't understand all this, I know from experience that He is more than capable of carrying us through.
I got a referral to a neuromuscular specialist today and hope we start moving forward now that we have clear answers.
What a blessed journey we're on.
2 comments:
Susan - Knowing what's wrong is half the battle. Now we can pray against this muscle dystrophy and ask God to heal it. We can seek out the best medical attention too. And we can trust God to take care of it. He is able. And willing.
hey there - I missed this blog. Lots has happened with you since we talked even though it was only a month ago. I think of you often and we never did get our coffee, did we? talk to you soon!
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