It’s been a long and exhausting day. Gavin has been struggling a bit and I have to tell you, as frustrating as his behaviors are for me, the most overwhelming emotion I feel is heartbreak. Gavin drives me completely bonkers. I’m not ashamed to admit that and I own it 100%. At the same time, it’s heartbreaking to watch him devolve to where he is, especially knowing there’s nothing I can do to stop it.
As his parents, we love him unconditionally, as we do his brothers. There’s nothing he can do that will ever change that. Sure, he drives me crazy but he doesn’t have the market cornered on driving me crazy, his brothers do a decent job of that in their own way.
Having to watch someone you love decompensate, lose skills and memories, knowing there isn’t a single thing you can do to make it better, is a soul crushing experience. It’s a powerless, gut wrenching, truly awful feeling that is very difficult to talk about, let alone put into words.
I’m so tired of just being there for him. I want so badly to find answers that have a direct impact and help to improve his overall quality of life.
I can’t explain how hard this all is and how worn out I feel after all these years.
The best I can do is always be there for him, never give up and exercise as much patience as humanly possible.
Very difficult to have to deal with an unwell child (mentally and/or physically) and realize said child will NEVER get better. I’m largely over the heartbreak I have with my son with moderate to severe fibromyalgia. But to look at him and know that every task he does is difficult due to exhaustion, fibro fog, or excessive pain (all WITH MEDS), can be hard if I dwell on it.
I realize this isn’t autism, it’s the other son who has it, and I have it and fibro. But it’s a story about dealing with a son who is chronically impaired.
The reason I dug down into that was because I can remember times of driving to work, praying and crying over my son. So while Henry actually is cognitively aware, it’s a huge struggle. Not like Gavin but I can see how hard it would be to see Gavin decompensate. And I can see the heartbreak. You all are not alone. ((HUGS))