Feeling low
While not everyone has a crisis. Everyone has a story. Thank you all for listening to ours. Thank you for donating. It's hard to say it out loud; we have been crisis for some time. We still are. It's December 14 and Grant has been on the waiting list since July. They have no idea when it's his turn.
He is back to hitting his chin this week. It has opened again and it's purple with bruises. His teacher and I use towels and diapers to pad his already padded gloves because the sound of his chin being punched is nails on chalk board times 1000. I can not find words to explain what this sounds, feels and looks like as a by-stander. I have cried deep, soulful, grieving tears as the chin hits returned on Friday. The hitting is non-stop, but the chin hits ebb and flow. No logic or reason that the adults in his life can derive from his painful attacks to himself. You will only understand fully if you spend 1-1 time with him. It is beyond depressing. It is soul wrenching grief. It is PTSD inducing. It is scary as hell. This is hell.
I don't actually know anyone with Grant's story. I have met a few people online that have children with SIBS (self-injurious behavior) or serious aggression towards others. I have never known anyone that has a severe eating disorder, but I am more than aware the numbers of people that are affected by this issue are really high. The children I know with autism are actually rather high because I am a teacher to 500 students. I will be the first to admit that I don't have a damn clue what autism is anymore. Because none of these children I know with this label seem like my son.
When I feel crappy about this situation we are in as a family; I attempt to open my eyes a little wider. While I can't find anyone with this exact same scenario; I by no means think we as a family are alone. It takes a simple look at a Go Fund Me or YouCaring site and you will find family after family seeking help. We are not alone.
One of my best friends has taught me an important rule in life. Someone always has it worse than you.
Now if you knew my friend. You would smirk. You would shake your head and love her more. The genetic card she has been dealt with is simply not fair (as if life works like that). My beautiful friend has disorders with no names and has out lived her projected mortality. I would venture to say not only is this not fair and shitty, but she has never had it easy and she and I know damn well it never will be. She didn't ask to be anyone's role model or super hero due to her complex disorder that has made her body an annoying shell that slows her down. But, she has taught me a valuable lesson or 2, whether or not she realized it.
My friend has been in and out of the hospital more times than I can count. On one hospital stay, she told me about some people she had met with serious burns. My friend had almost died! Her own story was scary and upsetting, but here...she tells me how much deep empathy she felt for these people with burns. Maybe she didn't know it at the time, but I was just struck by her attitude. While she is going through total shit, she still always remembers that it could be worse.
I envy that attitude. Wallowing is not helpful. I do attempt to move forward. I seek answers. I enjoy my respite as it comes. But, I would also be lying if I said I can do it as gracefully as she demonstrated to me. This is the lesson I am grappling with today. Pity is easy. Being the victim is a warm hand to hold. Like I said before. Grant needs a better life than this. As his parents, his family, we want him to be happy. As he punches his chin, the side of his head...happiness seems to be a challenge and we just don't know why.
