Most people will never know, let alone fully understand what it’s like to have a child with fragile health. Please understand that if you are among the many who don’t get it, count your blessing every single day because I wouldn’t wish this on anyone.
Living in constant fear for your child’s life is truly awful. The stress is endless and the heartache is abundant. The guilt for not being able to take away your child’s pain or fear is unbearable on a good day and I’ll just say that the bad days are really bad. 😔
My oldest son has several life threatening health conditions and they require frequent doctors visits, hospital stays both planned and emergent, as well as special procedures every few days. Thankfully, he’s not be hospitalized in a few years. Part of that is due to sheer luck and the other part is constant, methodical, deliberate care. It’s exhausting in every possible sense of the word but the effort is absolutely worth it.
Tonight it occurred to me just how normal this has all become. I suppose that’s to be expected after so many years but I tonight was just a really good example of that.
Lizze went to bed early and I put the kids down about 9 PM. I’ve had the last few hours to myself and how do I spend them? I spend them setting up Gavin’s IVIG Infusion packs for the next month’s worth of infusions. Gavin gets 8 of these life preserving infusions a month. This is what essentially gives him a functioning immune system. Without these infusions, he’d have no way to fight off any illness and that’s not a good thing.
Anyway, we try very hard to help Gavin manage as much of his own life as possible and that includes his own healthcare. One of the ways we do that is by making sure he can perform his own infusions. This has been a process and it hasn’t been easy. Gavin tries very hard but his capacity is limited and we have to simplify the process as much a possible.
I decided a little while ago to setup infusion kits. This would make it super easy for Gavin to put his infusions together because everything is all self-contained.
That’s what I spent my me time tonight doing. I did watch a couple Die Hard movies while I was doing it. It didn’t really occur to me how unusual what I was doing actually was, until I saw my reflection in the TV.
Such is life when parenting a child with fragile health.
I think its time we parents stop coopting our childrens identities
This is our every day. The last week its bathroom issues and melt downs.