almost, never, normal - such useless words

Almost, that’s such a strange word. The dictionary defines it as “very nearly” and “all but”.CCHS seems to be the very definition of the word almost. All looks normal by appearance but appearance can’t be trusted with CCHS. Wyatt appears healthy on the outside and from a medical disease kind of standpoint he is. He doesn’t have underlying lung disease or a weakened immune system or any other illness that could be treated with medication, but he has a life-threatening genetic mutation which makes him a medical mystery. If you read the research and the statistics you start to believe that it’s only a matter of time when other complications related to this autonomic nervous system disorder will surface. And since the research is limited to the few cases known, you end up desperately searching for answers to your never-ending questions, answers no one can really give you. All you get is gray potential risk factors of other issues that have surfaced in other CCHS cases. One can only take an educated guess whether or not those complications are due to CCHS. But to be on the safe side, it is assume that they are so we end up with a long list of regular tests and specialists. These medical specialists consider this such a rare disorder though that even they are left with only depending on test results but are left without a complete understanding of what or why things are happening. So you as the parent end up hoping that each test comes back normal without knowing what normal really is for a CCHS child. And then you wait for the next year to come around to do all these tests all over again. So what does it all really mean? The humanitarian in me says it’s research that will eventually lead to a better understanding of this disorder and therefore to medical advances. And while that is true, I’m a realist. So let’s be real and say out loud what no one else dares to say. I don’t care! Research is supposed to provide  a better understanding of how to properly manage this disorder. Managing this disorder from that viewpoint though means managing it medically to supposedly provide a better quality of life. The meaning of quality of life is very subjective though. And while I am a very factual person by nature, quality of life simply can’t be defined by objective tests. I cannot in my right mind define quality of life by being hooked up to dozens of wires during multiple sleep studies, by being exposed to more radiation in a year than a so-called normal person is exposed to in their lifetime just to accomplish all these advanced medical imaging tests, or by being obsessed over the smallest up to date research available in the hope that they’ll one day find a cure. To me that’s not the definition of finding the best quality of life. It’s the definition of living in fear of the unknown. I want my child to live a good life to the best of his abilities, whatever that entails. I want him to be treated like a human being, not like a medical guinea pig. I want him to live life to the fullest without worry of what the future holds. None of us are guaranteed a tomorrow so why are we so worried about trying to figure out tomorrow for a CCHS child? Any of us, CCHS or not, could develop certain serious medical conditions at any given time yet we all don’t just run out and get every test in the book done every year. It’s such a no win situation. If you don’t do the tests then you’re considered irresponsible because you’re not being proactive about the potential complications. Yet if you follow along with all the specialists and tests you end with 20 different opinions because no one really knows what they’re dealing with. That in turn then leads to you as the parent getting even more paranoid, over-analyzing everything and starting to assume every little weird thing is CCHS-related. At this rate, the stress level alone is more likely to kill us all. Where is that deserted island when you need it? Well, it’s December already, the year is almost over and Wyatt is almost 6 months old. Six months ago he almost died, yet here we are now dealing with teething, pulling hair, poopy diapers, and all the other fun stuff that comes with raising a baby. So I’ve come to the decision that for now I’ll go along with the tests and the specialists. But not for the glamorous reason of the greater good but for my own selfish reasons of needing to learn more about the cause and effect and the ins and outs of ventilator changes or medical supply options for example because that is what really keeps Wyatt alive each and every day. As a follow CCHS mom once said, most people fear for their child to ever be on a life-support machine but a CCHS parent is thankful for that life-support machine because without it, their child wouldn’t be here today doing all the silly “normal” child-like things they do. So I will try my best of living in the moment and not getting sucked into the never-ending discussions of grim possibilities because that worry will always be there anyway. I don’t need tests, specialists or research to remind me of what could go wrong. We could be driving up the Chicago to see that specialist to do to the right thing for the greater good, to do what we are supposed to do for our child and then end up getting killed in a car wreck as far I know. There are no guarantees for anything in life, not even for life itself. So what’s the point of all this worry? I’ll even push my own hard feelings aside and go along with the therapists and home nursing for now. But I have to be honest, I hate it with a passion. It’s not because the therapists or nurses are not good at what they do. I hate it because it’s a constant reminder that Wyatt is “different” or “special”, as most people refer to him now. They always say it with that expression on their faces like they feel sorry for us to be burdened by such a disorder. The nurses, while they mean well and the occasional breaks are appreciated, in some ways the simple fact of them being there is essentially saying the same thing. And as if to make themselves feel better, people also always say with those puppy eyed sad faces how cute Wyatt is. And then there is even the debate of how to teach Wyatt about his disorder as he gets older. On one side you want him to be as “normal” as he can be and fit in but on the other side, you know that’s not a possibility. There will always be modifications and precautions to everything he does. A simply thing like running around playing won’t be simple for him. His breathing rate and blood pressure for example won’t adjust to increased activity. When he gets tired he can’t just start dozing off because that could kill him. There can’t be unexpected cute naps in the car on a family day trip. Naps have to be planned with the ventilator attached to him as soon as he gets tired or else it could kill him. And that’s assuming he’s even able to come off the ventilator during awake hours when he’s a little older. Simple things like swimming or diving which are fun things for kids to do can be fatal for Wyatt. According to the specialist, these activities shouldn’t even be performed at all because if he holds his breath while under water, his brain won’t automatically send a signal when it’s time to surface and breathe again. Unless he learns to consciously take a breath every time, he would just eventually pass out in the water and drown. Judging strictly by appearances though, you’d never know the risk factors involved Wyatt will have to face each and every day. What people don’t understand is that he won’t show physical signs that something is wrong like you and me would. His skin color may not always change when his blood oxygen levels drop and/or his CO2 level rises. He’ll just look like any other cute baby dozing off at the preschool lunch table. Do I want to refer to him or treat him differently than my other kids though because of these precautions and risk factors? Do I want people staring at him because of his trach and ventilator? Do I always have to bite my tongue when it’s obvious that people want to say or ask something when they see Wyatt but they are just too scared to do so? So this goes out to those sad puppy eyed people and those worst case scenario medical professionals: Don’t you dare feel sorry for Wyatt or our family. There is nothing to be sorry for. Don’t you dare treat me like a naive parent just because I have chosen to push the grim risk factors aside and look at my child like a human being with feelings and dreams just like everyone else. In fact, I bet you our family knows more about how to appreciate life’s little moments than you do. Wyatt has already contradicted most of the early predictions of what he can and cannot do and feeling sorry for himself is not on his list of things to do in life. As far as I am concerned, he can and will do whatever he sets his mind to and in the end, what exactly that entails, well, that decision will be up to only one person - Wyatt!