For the last week and a half since we got the diagnosis for my boy, I have been prayerfully optimistic. Research and treatments have come so far, the disease is being managed well enough that boys are living well into adulthood, and having successful lives, marriages, kids, jobs, the works. I have focused on this, almost to the exclusion of the reality of the disease.
You see, my son was diagnosed with Becker/Duchenne Muscular Dystrophy. Because of his age, and the progression, it is likely the more severe Duchenne. When I got the call, I will be honest, it ripped my heart out and threw it in the blender. I cried. I wailed. I yelled at God. I begged for mercy, and that the tests would turn out to be wrong, or that I was having a nightmare. I called my wonderful mother in law, and got my head and heart right, so I could focus on my son, who needs me, and that is where I have been for the last week and a half, even with all the new information being thrown my way.
Today, we had a follow up appointment with the awesome sleep specialist that he sees, and found out that he has minor sleep apnea. Now, this is not a big deal, and if it were any other child, they would give us a choice whether to treat it or not, because it is so minor. The thing is, is with muscular dystrophy, the muscles start to break down and weaken over time, and if he is already having to struggle to breathe, even a little, we need to do something to help now. We are going to have his tonsils taken out, then have a follow up sleep study, and if he is still having trouble, we will need to look into a machine to give him oxygen at night.
That was what scared me.
In my world, the reality of wheelchairs, breathing machines, and medicines to keep his heart healthy aren’t going to happen.
In my world, my son will continue to grow stronger every day, and have many years of being a happy, healthy, albeit clumsy, little boy.
This is not reality. I was slapped in the heart with it today. Not that his doctor was being mean, or pushing anything at me. The opposite, actually. He was kind, and honest, and when he saw I was getting overwhelmed, he pulled back, and reassured me that that is not where we are right now, but the damage was done. I saw it in my head, my son, asleep, with a machine making sure he was breathing, pushing air into his little bird chest, and it was real, and brutal, and scary, and I wish I could stop seeing it, but I can’t.
I know this is not our reality right now, but I also know that I have to accept that it is a likely reality at some point.
I am not posting this to be a Negative Nelly, but, really just to get it out there. You see, I tend to post Susie Sunshine stuff on Facebook, so my friends and family don’t worry, or, worse, block me (because, yeah. I get tired of all the poor, pitiful me posts I see from certain friends, and hide them, not because I don’t care, but because it brings me down, and I have enough in my life to do that) and leave me to cope by myself. Well, not by myself, exactly, my husband is awesome, but we are in this together, and if one of us can’t see the mountain for the molehill, the other isn’t likely to see the situation much better. That’s what friends are for.
I started this blog, because I was pushed to for Rob’s Big Losers, but intend to use it as an outlet, and to reach others who may be struggling, and let them know it’s okay. We all fall down, and we all have certain struggles, but it’s how we deal with them that makes us different.
Today, I was a bit down, but who knows what tomorrow will bring. I’ll deal with it then. For now, I have a boy who wants to play, and a girl to get from school, dishes to do, laundry to sort, and all that good stuff that I love, and wouldn’t trade for all the world.
See you all next time! ❤