Back but…

Our girl is back from her PICU stay at hospital but far from ok.

This mommy heart, and my friend’s aunty heart, is very sad for her. Nothing takes your concentration and ‘mojo’ like the suffering of an innocent child.

I can’t even describe how bad the admission was. So bad her OT phoned the Paed’s rooms the next day to ask if they think she can do some kind of training for nurses regarding how to empower autism parents who know their children much better than they ever will. Simple things like when we tell them she will not just sit in a glass cage but will scream and cry and try run away while they make us try hold her back for six hours.🥹

To how they don’t ask how she prefers things done, how to reduce her suffering. So instead, add to it.

Some nurse spoke snootily to me that no, she didn’t try rip her bandages off her hand, she just wanted her thumb. A thumb which they’d already left sticking out and which she wasn’t there to see her NOT trying to get to. The nurse spoke snootily to me when I told her if she doesn’t sleep, she will remove her nasogatsric tube (Goes through the nose down the throat and into the stomach to flush her awful fecal impacting down and out) and told me she can’t sleep all day and she will not do anything as she’s peaceful.

I

Peaceful and peaceful after the ripped the tube out too.

It was days and nights of trauma.

And now she’s home and sad and lying down a lot. She’s not the running around noisy girl. Unless it’s raining like yesterday.

And so, our loving hearts grieve her sadness and suffering and we hope she feels fully better soon.

I can’t even get all six 250ml servings of treatment into her. I couldn’t even get one dose in. She’s miserable and sad and spits it out and it wasn’t even one of the horrible tasting ones. Praying today I can get it in. I use a syringe so it’s slow going. And I have to wait for her to kind of forget so that she doesn’t immediately spit out the next dose which I syringe into her mouth. But I have five other children and myself to care for so the day runs away from me and her medication too.

My heart is sore.

So thankful for my friend whose heart is also so sore for her and wishes she could rescue us. A burden shared is a burden halved. ❤️🙏🏾