It's a bug life...

Javad, our youngest son, has a very rare muscle disease called Myotubular Myopathy. This disease affect every major muscle group in his body, including his lungs. He is a strong boy, in the fighter sense, although weak in every others when you compare him to others. Looking back (you know how hindsight is always 20-20), I realize that there are many times in his young life that he should not have survived. Perhaps having a mother who was unwilling to even entertain that her son might die helped, although I also believe there were some guardian angels by his side (my uncle R'Dean and his grandfather, Babajun). I may talk about faith another time, but let's just say that I wholeheartedly believe that these two strong men, along with an amazing medical team and a stubborn mother, are the reason that he is here today.

Every winter is like a roller coaster of bugs at our house. For Javad, a simple cold can turn into a multi-week battle. It's like a miniature war happens in his bedroom. We have hand sanitizer everywhere and if any of us are sick, we are banished to the rest of the house suffering from not being able to give that sweet boy kisses.

Last January, Javad was sick and missed about 5 weeks of school. We could never figure out what was going on...low grade fever, low energy, cranky. Nothing would turn up until one day he just seemed better. We were thrilled and then moved on. In April we found out that Javad had a bone infection that was discovered due to a broken leg. This was serious stuff. He was put on a high dose of antibiotics for 6 months and then deemed healthy. They don't check to see if these infections are gone, just assume after 6 months that it is. Now, he is sick again. This has been going on since early December...low grade fever, low energy, cranky. Sound familiar? Well, that's what I have been thinking. I am trying not to be paranoid, but you must understand that a major infection could be beyond serious. Last spring we were in the hospital for three weeks. It seemed like an eternity, yet once when he was two we spent 6 months in the ICU.

I am strong willed, stubborn and a mama bear. Whatever you want to call me, I am. I am willing to take doctors on, fight them, even argue. I must confess, I have been having weird dreams. I can't really believe that I am saying it out loud to you, but weird dreams that something bad might happen. I don't know why. Every once in awhile I have these panicky moments and begin to hover. In our community, the MTM community, we have lost so many boys in the 9 years since Javad's diagnosis, over 90 I believe. It can be a horrible disease that takes children quickly from something unrelated, usually a respiratory issue. I never want it to be my turn. I want my son to grow old. I want to be kissing his 50 year old face. I want to have to worry who is going to care for him after I am gone, not have this feeling in the pit of my stomach like I have now.

Having a medically fragile child changes you. It either breaks you or makes you unbelievably strong. You become unwilling to accept what medical professionals may think, willing to beat the odds. Whenever I hear about another boy in our community struggling, possibly coming to their time to go and play in the playground in heaven, I have these feelings. I know they are both rational and irrational at the same time, (which as I laugh at my mathematical self, realize that being both is impossible), but I still have the feelings. I am his mother. There have been many times I have sat and watched him just breathe. As I am sitting here writing, I am hearing the whoosh of his ventilator coming from his room (that adjoins to ours). It is a sound that is almost comforting...he is sleeping peacefully.

I don't know what this life might bring me, but I do know that having this sweet boy has profoundly changed me. It makes me realize the important things in my life, people who accept my son for who he is, friends that try to understand our life and are willing to work around it (our lateness, last minute cancellations, preferring to entertain at our house because its easier). I used to think that life was about getting from one place to another but having Javad has made me understand that life is about living, however you want, and appreciating the small (sometimes almost imperceivable) things.

But at times like this at our's a bug life.


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