I’m (we’re) at a very strange place in the whole Nate-has-a-myriad-of issues journey. It’s not a bad place to be. I’m very grateful he’s done as well as he as for so long. The problem is, as it has been from the beginning, he doesn’t fit a mold. I believe not having a mold to fit in has gotten Nate more respect in the medical community had he had a diagnosis from day one. I believe his doctors have had to rethink things they were taught and hopefully have become better caregivers in the process. I believe not having a mold has let us have a more positive outlook on his prognosis. I believe I have worried more needlessly with him not having a mold. I believe I may have drunk a few more glasses of wine than needed in searching for a place for him (and me, as his number one worrier) to fit. None of these are inherently bad or good. They just are.
It’s difficult for me to put this in words but the words are clawing their way to the surface of my mind and I feel as if I need to put them down in order to gain a better perspective. I find perspective in some strange places. In the fog we often see on the Mountain. In the way I react to wrong supply orders (and the dumb redneck who answers the phone at the Medical Supply Company; if there are 2 things that bother me, they are DUMB and REDNECK). In the way Mr. A and I treat each other. In having conversations with friends. Every little thing can help me see the where and what and why of it all.
I can’t function unless I can make sense of my life and world and make it all work in a peaceful way. I end up justifying many things in looking for peace. For example, I can justify denial as a valid way to process things. For the most part, if it’s not conducive to a happy life to worry about something, I don’t. I can push things to the back of my mind and let them stay there. I think it’s more survival mechanism than anything but it’s denial all the same. I honestly see no point in worrying about something that I can’t change, don’t have control over or shouldn’t have control over/can change. Worrying about how long Nate will have (fill in the blank) doesn’t change the outcome. Not to say I don’t validate any worries I do have or that I don’t worry at all, but I have become very clinical in deciding whether something is worth my time and worry. It’s a very complex system I have, is what I’m saying.
Now, back to that strange place. Where does Nate fit in the whole typical vs. delayed/medically fragile vs. healthy child world? He doesn’t fit a mold. Several children with delays and medical issues don’t fit a mold but most of the time they have more significant delays and issues than Nate. And as chief non-worrier about Nate, where do I go for support? Where people understand without pitying (I hate pity!), or on the flip side where people understand without thinking I have nothing to complain about?
Nate has a trach, which means we maintain an open airway for him. An open airway where germs and stuff can invade his body. He can’t clear normal secretions on his own and must be suctioned or wear a device that helps him clear the secretions. He sleeps on a vent and gets fed through a tube in his stomach. He’s had several surgeries and will have more. He is delayed developmentally and goes to therapy once a week.
Okay, so he has the trach but he’s fairly healthy. He’s constantly snotty-sick but that’s kind of normal with his issues. He’s had multiple surgeries but he has always recovered and there will be an eventual end to the procedures. He sleeps on a vent but hopefully, one day, won’t need it any longer. He gets fed through a tube in his stomach… okay, on that one I have no window of light-he’s fed through a tube in his stomach. But he doesn’t have a problem with his formula and he’s growing. He’s delayed developmentally but to the casual bystander, not that much. He looks and acts like a typical 3 year-old. He goes to therapy once a week but now he only has speech every week and physical and occupational therapies once a month. He used to see 3 therapists every week and seeing only 1 or 2 now seems so simple.
I have a wonderful support group in my friends and family. It’s so very comforting knowing if I ever need anything, there are people I can call at any time and they will help me or find someone who can. Mr. A, Bo, Nate and I would not have survived this without these people and I will never be able to repay the kindness we have been shown. But they don’t understand the medical side of things, nor should they. It’s all very confusing and if I were to say, “I’ve been wondering if Nate’s suprastomal collapse is due to the trach or his underlying hypotonia,” I don’t expect anyone to get it.
The other group of people I wouldn’t be able to have survived this long without, my friends from the Trach Forum, aka Life Support for trach parents, they get the medical. I don’t have to explain what suprastomal collapse is or explain that the device that helps him manage his secretions is a Passy-Muir valve or what it does. They live this life of suctioning, doctors’ appointments, surgeries, dealing with DMEs who seemingly never get an order correct, and having a desk drawer dedicated to EoBs. And while they are ALWAYS supportive, ALWAYS understanding, I often feel as if I shouldn’t complain to them. Most of these people deal with so much more than I ever will. A lot of their kids will never get rid of their trachs. A lot of their kids are significantly delayed and will never fit in with a group of their peers. Several of these parents will be taking care of their children when their children are adults whereas I plan to kick Nate out of the house when he’s 18 (not really, but really). Too many of these parents will lose their children to the diseases causing their medical issues.
I feel like I’m in some middle land of the journey with Nate. He’s just medically fragile enough that he’s not normal and he’s just normal enough that he’s not medically fragile. There is no mold for him and there’s no mold for us as parents. I’m not sad or upset about this but maybe perplexed? Intrigued? Are there other parents like us? I know there have to be but where are they? Should I seek them out? Do they want to be found? Are they like me and pretend they fit in but don’t really?
I’ve stopped blogging, in part, because of this middle land. I guess I’ve used the blog in the past to fill the space (not void) between the 2 worlds, but I don’t like the way I’ve used it. Reading back through posts, I’ve found myself being preachy in trying to explain medical stuff and whiny in the complaining. I sound like a total bore who needs to learn how to use punctuation! It’s extremely embarrassing the assumptions I’ve made in thinking people want to hear about certain things and not about others. It’s cringe-inducing to realize I’ve been so condescending in some posts, talking about how I do things and making it sound like that’s the best way. And it’s very eye-opening to realize how much I’ve struggled when I’ve thought I’ve had it together.
I’ve gotten off Facebook. You know, the time-suck of a social networking tool that I spent way too much time on. The one that made me think I was keeping up with my friends but when I think about it, how is knowing that someone is painting their toenails keeping up with them? Maybe with my extra time I can get back to blogging and stop feeling like I’m in between 2 worlds. I hope that I can be less preachy and more sharing. That I can find my bearings with positive words and valid thoughts.
