We heard the words no parent ever wants or expects to hear.
" Your child has a disease. There is no known cure. Nothing to be done. Just help him through it and keep him comfortable. In a wheelchair by 8 or 9. Death in the teens or early twenties."
It isn't something you can really describe to anyone who hasn't been there. Even now, since the diagnosis a few months ago, I can't fully remember my thoughts and reactions of those first few hours, days, and then weeks. It really is that indescribable. The shock, the hopelessness, the pain. Thousands of people before us have gone through it. Now, apparently its our turn.
You know how you see these kids in wheelchairs, or hospital beds, or crutches? And you wonder.. how on earth do those parents do it. Your heart goes out to that smiling mom or dad taking care of their disabled child and you admire them so much. You turn away, feeling blessed for your own healthy family, hold on to your kids a little tighter and go on with your life thankful that it is not you. Because you know "I couldn't do that. I wouldn't be strong enough."
Well, guess what. It happens. And it happened to us.
I hate waiting and I can't stand to see suffering. Literally. Especially kids. And now I'm being asked to watch my son wither away slowly but surely, day after day until his heart and lungs give out and he dies. That's what muscular dystrophy does- muscles can not grow stronger, because the gene that should be feeding the muscles the protein they need is missing, or partially missing. Instead of growing stronger with age, they get weaker.
We adopted Riah knowing his mom was a carrier of MD, knowing he has 2 brothers that have it and 2 that do not. We got a phone call one day and heard "There was a baby born early this morning. Father unknown. Mother not able to take care of baby... he may have MD but appears to be a healthy Caucasian baby boy. No family ready to adopt him. .going into foster care very soon. unless you're interested."
We were. Somehow we knew this baby was ours, sent directly from heaven. Its magical. Someday, I will describe more, because it was amazing and its so much fun to remember.
They didn't test for MD when Riah was still in the womb because there were complications. We fell in love at first sight, brought him home with full intentions of having him tested asap, just so we knew. But since we were told there's no prevention, meaning it wouldn't help his disease whether we knew or didn't, we didn't rush to find out. And somehow, we didn't really care- he was our child whether we had MD or not. Time went by and suddenly he was walking. At 10 Months!! Rolling over. Sitting. Crawling. WALKING. All these things were either on time or earlier then average.
Muscular Dystrophy was thrown out the door. MD kids don't do these kind of things, we thought. I sighed with relief and all of us who love Riah probably did too.
"I wouldn't waste money on doing MD tests," Riah's pediatrician said, as he routinely checked for any kind of muscle weakness. There were none.
Here we are just a few years later. We took Riah to have blood tests done because we suspected food allergies. Results came back as I suspected. Gluten and dairy intolerant. Other results came back that I did not suspect. Very high Alt and Ast levels. Liver disease. Liver damage. Liver something.
Not My Child!!...
I went online, probably spending hours, just because I was curious. Googling all things liver, Ast and Alt. And also because the MD thing surfaced in my mind like it always did whenever Riah had a slight case of anything.
I found it. An article stating liver disease is sometimes falsely diagnosed. I read about how damaged liver enzymes showing up in blood work... can actually mean damaged MUSCLE ENZYMES.
I knew. As soon as I felt cold blood and fear rush through me, I knew. The dreaded liver disease we had tried preparing ourselves for? I was suddenly PRAYING for it. Please, let it be Riah's liver. ANYTHING but muscular dystrophy! After all, a new liver is possible!!
All new muscles?? Not so much...
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