If you have a child with disabilities, and most of the time you just get on with it and love them and try your best to look for and see the silver linings… I get you! I’m there with you. But can we just say this- some days it’s all uphill!!
I am so proud that Lauren got my little fiesty flare, so proud. It has gotten her to where she is. She’s accomplished so much and with the problems she has, it’s mighty impressive. When you don’t have a corpus collosum, communication between the two parts of the brain is as difficult as it gets for things like two handed coordination or walking. Yet she’s just so full of fight I adore her. Most days!
The flip side is when she decides to use that gift for the dark side!! She kicks, hits, pulls hair, refused POINT BLANK to take tablets. She refuses to eat. She is 95% solely peg fed now. It’s just heartbreaking and I feel so out of control it scares me a lot.
She refuses to get up off her potty this morning. All of the above happened, where I then have to pick up a fighting child trying not to drop her. My back is killing me instantly because she’s a wriggling fighting 30kg human!😫
There’s no where to go cool off because she needs to be ready for school. I then tell her Donna (who she loves!) is downstairs, and Grandad is coming to take her to school, she starts crying. She wants me. But in that moment I don’t want to see her for the rest of the day. I need space to process my feelings because I cannot keep up with hers.
So now it’s a rush job to pack her lunch, her school bag, her milk bag. Peg feed her, me force some tablets (not literally!!) down her, even though we have help. This is to stop her trying to throw up and act up, having lost every ounce of patience with her, just need her out of the house.
And then, just collapse into a bit of a state on how today is a complete failure and how on I don’t know how to feel. So I write. I write because it processes my emotions, I write to show people that on my good days , it’s great and I’m rocking this special needs mum thing, but I have awful days when I don’t want to be around my child. It’s too hard. Today is one of those days.
If you’re in that boat- don’t feel like you’re alone. You’re not. And the greatest gift we have (although I know, not guaranteed) is time. This afternoon I’ll start over with Miss Jekyll & Hyde. We’ll have the house to ourselves for a couple of hours, she’ll ask constantly about Grandad hoping she sees him when he brings Wyatt home, she’ll tell me Donna was here this morning and smile at me a lot.
I’m not always equipped for this rollercoaster!