There is a special kind of grief that exists when raising a special needs child. The hopes and dreams I had for my child die a little more each day as I watch him move forward in life. When he was just five or six, I had hope that we would find a cure or a treatment to slow the progression of his disease, that he would function better. It was that hope that kept me going. Yet here we are at age 13, and while he is the smartest, kindest, and most gentle soul you will ever meet he has declined at an alarming rate.
It is hard to hope when your child pushes against an ever stronger current.
The grieving never ends.
If you let your guard down for even a moment, some terrible incident will come slamming into you, reminding you that your child will never be like the others. He will always be different.
To accompany the grief, there is its sister– guilt.
Guilt that I did something to cause it.
That I should have noticed the signs sooner, gotten more and better treatment, sought a different course or path.
That I should be doing more, reading more, helping more, trying harder.
That I should spend more time, more money, more effort supporting my child.
That I should experiment with a different therapy, a different drug, a different teacher, a different diet.
Every mistake I've ever made haunts me. Every time we need equipment and we can afford it I blame myself for making poor decisions when I was younger. Every time I look at houses that would be perfect for Trenten and I know we can't afford them I die a little inside because I know that if I had made other decisions along the way we would be better equipped to take care of Trenten and give him all the things he needs and deserves. I feel like we will never find a way out of this and we will never be able to give Trenten what he needs and that if we do it will be too late because he will be gone and it will be all my fault.
Am I giving enough of my time to my two other children? Do they feel left out or ignored? Does Trenten feel resentment because his brother and sister can do more than he can? Are my other kids being forced to grow up faster because of all that Trenten goes through? Are they seeing things that are going to damage them for life? It never ends the guilt and the grief never go away.
And whenever I try to give myself a break, cut myself some slack from overworking, overthinking, over-trying — there’s always a judgmental comment or stare to put me back in my place.
Sometimes it brings me to uncontrollable sobbing.
I can’t make the grief or the guilt go away.
My anxiety directly correlates to Trenten's doctors appointments. When he’s doing well, I usually do okay. When he struggles, I get worse. I’m sure it could be defined in some complex mathematical formula. All I know is that when he hurts, I hurt more.
And he always hurts.
But the love that we have doesn’t take our pain for him away. In fact, it just intensifies it. Because we can’t take his hurt away. We can try and try and try, and we DO, and it might even help a little, but we can’t make the pain that accompanies disability go away, we can't fix it and that hurts us even more.
It's a unique kind of grief that never stops.
Until next time
~J
