Right now, we are on our way to the childrens hospital 2 hours from us where both of my children are regularly seen.
They have their “big”appointment today, neuromuscular. This is the doctor who diagnosed all of us and has been sort of the leader in their care. She’s the top neuromuscular doctor in the world, and we’re glad to have her.
Well, I say that, and it’s true…I am glad we have her…but I wish we didn’t need her.
I hate these appointments. We usually get a lot of information, new “lifespan” updates, more specialists they need to see, more appointments, traveling, therapies…it’s a lot. It’s always a lot.
I usually handle these appointments by myself, but since both kids have an appointment today, and I’m pregnant, there’s no way I could’ve handle that alone. So my husband came with me today, which always both relieves stress and adds to it, just slightly.
Don’t get me wrong, I’m definitely glad he’s coming and I’ll have him with me today, but it can make some parts of it harder. Like, I’m very used to this. I’m used to these kinds of appointments, and the kind of pain and hurt they can bring. I can compartmentalize and put my feelings aside (ignore them).
I can hear what the doctor is telling us and really hear what she’s saying. I know how to present the most pertinent information that the doctor needs to know about..and I know how to deal with the aftermath. Sort of. But it’s definitely a learned experience. And it isn’t something anyone should ever have to learn to deal with.
We’re over an hour into our 2 and a half hour trip, and so far, both kids have been great. No complaining or asking “if we’re close yet”.
I hate that this is their life, that it’s so consumed with doctor appointments and therapies and…just all of it. But it’s so normal for them. It’s just their life. They both go through it, and so do it. So even though it’s sucks and it’s rough…it’s just our reality. Our normal. Even if it isn’t normal by any means.
While I hope today is light and won’t bring hard truths that I don’t want to hear, I know it will. I know we will be leaving with heavy hearts and minds going a million miles an hour.
I know my 5 year old needs surgery. I know his cardiac function is getting worse, and I know my 3 year old is losing strength at an alarming rate.
Today will suck. But I have to hope it won’t end as badly as I’m anticipating.
I’m glad my husband is here, and I’m glad I have therapy tonight so I can process whatever is thrown at me today.
I’m strong for them because I have to be.
But I really wish I didn’t have to be.