I tried to write a few days ago about coming to terms with the MCADD diagnosis, and it came out wrong. I'm not a writer, so sometimes I share whatever is in my head and don't realize until days later how much like a jackass I sound. You live, you learn.
I'm not glad Cupcake has MCADD, I'm so glad and thankful that she was diagnosed. Thanks to that we will be able to hopefully have a healthy life, with minimal hospital visits, and keeping her disorder under control through careful food monitoring. Because we know about it, she will be able to avoid fasting and hopefully lead a perfectly normal life, free of medical interventions, physical disabilities, and developmental delays. We want this to be but one of the many things that describes her.
I struggle a lot with how to deal with her diagnosis. And I've reached a zen point where I am good with it. Of course I wish she was completely healthy, free of genetic deficiencies. But I'm realizing more and more that everyone has something wrong with them. It could be MCAD, it could be allergies, chemical imbalances, weak immune systems, asthma, you name it. Going through all this, specially the initial doctors appointments, has been a learning experience that's made me appreciate many things I used to take for granted.
It would be nicer if my internal realization didn't come at the expense of my child having a life long medical issue. I am aware of that. But nevertheless I am humbled by this situation, and thankful that I'm going through the process. I think it's part of not believing in God, it makes me struggle sometimes with how I word my internal narrative into recognizable terms.