Take care

I’m a caregiver. I have a degree (Human Services) to be a caregiver… so I’m a PROFESSIONAL caregiver goddammit! Making other people feel better makes me feel like there’s a reason for my existence, so win win.

Then, the time came when I needed a caregiver in MY house 24/7. After Ian got hurt, he was pretty much eyes on. I was completely capable and qualified to do his care ( after years of working in direct care), but it wasn’t possible to do everything every second. So, I had to rely on other people to help me. It didn’t feel like asking someone to give me a hand, it felt like inviting someone into my house to judge me. Not only were they going to be monitoring EVERYTHING I did for Ian (to be fair, part of it was their job), but they were going to be looking at how I raised my other kids, my relationship with my husband, if I cleaned enough, if I remembered to feed my dog that morning, how often I cried. I know they talked about me (good and bad) to each other. (This doesn’t actually upset me-it’s human nature. And, even if I was perfect, I was still their “boss”, so there’s always some grievances).

Most of our nurses got fired pretty quick or didn’t make it past a day because Ian was too hard for them. A few times Ian would SHOW OUT, making himself choke and scream, scaring these poor people, so I wouldn’t leave him. If he didn’t like/feel safe with someone instantly, he wasn’t shy about letting you know-he could read people better than most. And, even if you were the most medically skilled nurse on the planet-if Ian didn’t want to hang out with you, it wasn’t gonna work.

Then, there’s the “problem” of having a nurse you love and trust. You are content that your child is safe with someone who can handle their medical needs, and glad they are with someone who loves them. They’re weren’t a lot of people who could understand Ian, people who actually KNEW him (and knew what a wonderful little butthead he was-that he wasn’t just some brain damaged dud in a wheelchair) were hard to come by. So, when you find someone like that, you cherish them. And, so does your child. They almost become their other mother. They are with them ALL day. When he cried at night, they went to him first. It makes me jealous. And, I absolutely DID NOT like it when they tried to tell me something about Ian that I couldn’t figure out first. Not that I was mad or didn’t believe them, but I’m the mom, I’m the one who understands him, I’m the one who can fix things.

I think this is an aspect of being a special needs parent that people forget about. Strangers come into your family all the time. Your supposed to trust people who might be nothing like you, to take care of your fragile darling. It’s so scary when your kid can’t talk.

So, thank you to the women who loved my son💕