If you get a chance and are interested in the emotions involved in having a “special needs” (or as I say, constant needs) child, a good book to read is A Different Kind of Perfect: Writings by Parents on Raising a Child With Special Needs. This is a wonderful book that explains what I go through at any minute of any day. I love this book because it lets me know that all the crazy emotions I feel are normal and even though I know none of these people, at least I’m not alone.
Taking care of Tater is very isolating. Of course I have Mr. Awesome and my family and friends and they’re all wonderful and supportive but no one can fully understand exactly what I go through on a daily basis. I have to balance taking care of Tater with making sure the rest of us has a normal life and that’s hard. A normal life for us is school, play dates and church which are full of germs that Tater can’t have. A normal life for us is travelling to anywhere and everywhere but we still haven’t figured out how to make that work logistically with Tater and the equipment he requires. People have all kinds of kind-hearted and well-meaning suggestions on how to do this or do that and what type of help we need but those suggestions make me second guess what we’re doing even more than I already do (and honestly, make me feel as if they don’t think I’m doing “good enough”). I have to look at the big picture and how each little thing we do will affect something down the road. Please don't get me wrong. I appreciate all the help we get more than anything in the world. It's my crazy mind that makes me feel overwhelmed sometimes.
So Tater’s life takes over the rest of our lives; Mr. Awesome and I try very hard to make sure our family never resents that because Tater is, after all, worth it. And I think we are succeeding somewhat because Toser seems well adjusted to us and the fact his little heart is so huge must mean we’re doing something right, but it is difficult not to second guess ourselves at every turn.
One of the main reasons we decided on the trach for Tater is so we can lead a relatively normal life and coming to terms with that was very hard. How can you say, “Yes. Please put a hole in my child’s throat and insert an artificial breathing port so I will be able to take him to the grocery store and to pick his brother up from school.”? The other options available to help Tater breathe would mean we would be at home ALL the time and those just weren’t much of an option in my mind because regardless of Tater’s conditions, we have to live life and life is lived outside his bedroom.
No one knows how to act around us and we (especially I) are not good at giving signals at how they should. I often feel that people want to see me react according to how they’re feeling. If they’re emotional and worried, I sense they want to see me crying and fretful too. I don’t know why. I mean I do, but that’s a lot of pressure on me. I don’t have the luxury of crying every time I talk about Tater because I would be crying every second of every day. I can not have a breakdown and “just let it all out” because “it” is never ending. I can't constantly reassure people that everything is going to be okay because I don't know that it is.
Tater, just like every other kid in the world, did not come with a guidebook. We don’t know what tomorrow holds for him. We don’t talk about that tomorrow because today holds enough for him and us. I want to give both my boys the most they can get out of each day because any of us might not be here tomorrow. Just because Tater has a bunch of problems doesn’t mean we’re immune to all the other crappy things that could happen to us or anyone else. Today is what matters. I don’t think I would know that to the extent that I do if it weren’t for Tater and this great adventure he has created for us.
I’m turning comments off on this post because I don’t want anyone to feel like they need to think any of this applies directly to them or to apologize. Everything I wrote about is a generalization of all things and not inspired by any one thing, event or person. There is no right way to deal with any of this. How you’re dealing with it is what’s right for you. Embrace that.
