Just because we’ve had lots of admissions, tests/procedures and countless emergency room trips doesn’t mean it’s any easier.
No, we don’t “get used to it”, we just figure out how to cope, some days better than others. The 10th ambulance ride isn’t easier than the first.
Just because we’ve had lots of diagnosis’ doesn’t make the new one any less scary and heartbreaking. If anything each added one crushes us more because it’s yet another thing to worry about.
Yes, we may have JUST come home and now we’re back at the hospital so “what’s the big deal?” Not like we’ve settled in at home and we know the staff so it must be easier.
It IS a big deal, because we’re not at home.
We are separated from our spouses, our other children, our comfy beds.
It’s not easy just because we’ve done it lots. This isn’t soccer practice, knitting club or a pottery class.
It’s our child suffering, struggling while there isn’t a whole lot we can do.
Just because we’ve been there, done that, doesn’t mean we don’t need support.
Yes this may be our 20th admission, our (who even knows) emergency room trip, but we still need just as much support for this one as we did for the very first one because it’s still scary and heartbreaking and exhausting. Oh so exhausting.
I get it, checking in gets tiresome and maybe overwhelming. Keeping track of it all? Goodness, I don’t expect you to. But imagine living it.
We don’t need the perfect words. They don’t exist. You can’t fix this.
But we need support. We need to know we’re not walking this alone, even during the small admissions, small procedures, little diagnosis’, the every day grind. Because that grind is busy, and takes a lot out of us.
And no, we don’t expect everyone to be there all the time. That’s impossible, and we don’t have time for that either.
But be mindful of how you can help. Even a quick “thinking of you today” message can make a huge difference. It reminds us that we’re not walking this alone, because we can’t.
Just because this is “our normal” doesn’t mean it’s easy, at all.
Please don’t forget about us.
It doesn’t get easier.
We need you.
And thank you to those of you who are there. We love you.
A very exhausted mom, and every other mom/dad who can relate.