A gentle reminder that my life isn’t “normal”

My son had his 3 year visit with his pediatrician this morning. The appointments that, for typical kids, might last 15 or 20 minutes, takes us an hour to complete. I hate these yearly visits. It’s a brutal reminder of just how….abnormal my life is. When I always seem to convince myself to forget.

I love our pediatrician, we have a great mutual respect and trust within each other. She has admitted that she thought I was just a crazy, overprotective parent at first, but I have since proved to be right in my obversations nearly every time.

That led us down the path to the eventual diagnosis of both of my kids crazy rare genetic disorder (similar to muscular dystrophy).

She always makes me feel like I’m doing a better job than I feel like I am. I always feel like a failure when it comes to them, like I should be doing something more…something else. Something better.

The conversations between her and I this morning were difficult, but it made me feel…I don’t know. I guess a little bit better about myself as a parent.

Me: “He’s my easy one” (When he was actually being kind of a jerk trying to take my phone from me…when he’s never allowed to have my phone…? He wanted Elsa. What can I say.)
Doctor: “I don’t think either of them are easy, you’ve just conditioned yourself.”

Me: “I feel like there’s something else I could be doing/do more of”
Doctor: “You’re doing everything that you can, and even doing that, you’re doing a fantastic job at it, and doing way more than anyone else in your position would be doing. You worker 200% harder than any parent I know.”

Me: “There has to be something else I can do for them….”
Doctor: “There is going to be a point where one of them is going to get sick, and we just don’t know when that is going to be. But all you can do is try to keep them as healthy as possible. The question you have to ask yourself is ‘are these children a blessing to your lives and everyone who has the pleasure of being a part of their lives?’ The answer to that is yes. You’re doing all you can do, and you’re doing a fantastic job of keeping them safe and healthy. We just have to hope that science progresses before the disease does.”

We talked about adaptive equipment, about therapies and specialists, about keeping them safe and healthy, about upcoming surgeries and other big events…

I convince myself that they’re “normal”. That they’re healthy. That they’re…okay.

But they aren’t. My children are 3 and 5 years old…and they’re lucky to be alive up to this point.

If that thought doesn’t fuck a person…a parent up….I don’t know what else will.

Oh, and also, Im fucking EXHAUSTED. So let’s not even get into the guilt that I feel for wanting to be away from them, to actually have time for myself.

Their time is limited. Everyone knows this.

And I have the fucking audacity to wish to be away from them for a few hours?

I’m with them all day, every day. Therapies, appointments, all that goes into keeping them safe and happy and healthy… and I’m grateful for the time. Because there isn’t a lot of it to be had.

I don’t know why I would ever want to be away from them. But I do. The (extremely rare) time I have to myself…without them…is the part of my week I look forward to. It’s maybe for a few hours on a Saturday. But it’s my favorite part of the week.

Does that make me horrible? Does that make me an awful, undeserving person?

My kids are going to fucking die at any moment when the disease fucking decides it’s ready to take them…and the parts of my life I look forward to are the ones when they’re with my husband and out of the house for a few hours?

If and when they’re ever gone, I’m sure I’ll regret ever feeling this way. The natural, human nature is to want to change the past. To wish for more time. To wish to go back, to do things differently.

I’m living my life with a future perspective on the present.

I know what thoughts I may have, what I might feel, once they are gone.

I am trying desperately to live my life in such a way, where if they’re not here some day…I don’t have those feelings of “I could have done more” or “I wish I did things differently”.

The logical part of me knows that the best version of me is the one where I take care of myself. And the best version of me, is also the best parent.

The emotional part of me wants to leave before they do. They’re young, they don’t need me.

And sometimes I really do wonder…

Which is worse? Them leaving me? Or me leaving them. And I have to say….

I don’t feel like I offer them much. I’m doing my best, but I know it’s not enough.

Besides…it’s my fault they have this. They got it straight from me. The genetic fucking lottery…and we all lose.

Just for once, I wish I could run away from the pain. It doesn’t seem fair.

Okay. Time to drink myself into a very bad night.

I’m sorry for being like this.

I just don’t know what to do with all of this fucking pain and heartbreak…in absolutely every direction that I look.

I’m not going to lie, I don’t have night hopes for tonight.

I have therapy first thing tomorrow morning…and I was going to bring my kids. Sometimes I bring them and she plays with them. It’s really cool, and it brings a whole new meaning to whenever I talk about them or bring them up in therapy (which is quite often).

They’re good kids and I was looking forward to it…but I’m also feeling really selfish and I just don’t want to deal with or confront anything.

I’d rather drink myself into a numbness and just not fake the “happiness”. I feel weak and broken…and I don’t know how any of this gets better.

I can’t see through it.

3 thoughts on “A gentle reminder that my life isn’t “normal””

  1. My favourite food in the world is cheeseburgers. If I only ate cheeseburgers, I would probably stop appreciating them. Taking breaks would allow me to maximize my cheeseburger appreciation. Sure, kids aren’t cheeseburgers, but I think breaks increasing capacity for appreciation still translates.

    1. I agree, that makes sense. Everyone is always better off when everyone’s tanks are full. Sounds like the solution here is a lengthy vacation…. 😬😅

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