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.
I need to catch up on your blog. I'm currently shorthanded around here lol.
ReplyDeleteHowever, I understand completely what you are saying. Klaw was 6mo old before his 1st hospitalization and I quickly realized just how lucky we are. For mist VLCADD kids (prior to NBS), this would have been the illness that ultimately resulted in metabolic crisis, then death. Having the diagnosis is the biggest step towards keeping our FOD babies healthy and alive.
I can relate. Jack wasn't picked up on newborn screens but he was given first rate medical care during his first crisis, so no lasting damage and- Jack's crisis enabled his younger brother's disorder to be caught before he was weaned and vulnerable to a crisis.
ReplyDeleteI've learned so much on this journey.
It is a strange ride, a lot of ups and downs. I am with you 100%. I have come terms with the challenges that we face. I have decided that we are lucky, he could have been diagnosed with something far worse. This disorder isn't going to define him or me. People say to me, "well he looks healthy." I have to just say he is healthy. Until he isn't and that is when we start to worry.
ReplyDeleteThank you all for your encouraging words. I am still on this journey, and trying to put it into words is really helping me frame how I feel about it.
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