If I had to describe in one word how it feels to raise a severely special needs child, it can often be summed up in one word...helpless.
Most everything is out of my control and it is something I just have to accept. Growing up I would always strive for perfection. Go to school, make good grades, no problem! Not that is was always easy, but with the right amount of hard work and discipline, it was something I could accomplish. I had control.
With Nick, nothing is in my control. No matter how hard I work with him or how many doctors we see, it's still basically the same: he's undiagnosed. Yes, we know the names and numbers of the affected genes but it is meaningless when your child has a one-of-a-kind genetic abnormaltiy. We ask the sames questions over and over to several specialists and are met with the same response: we don't know.
It's heartbreaking to watch your son scream and him not be able to tell you what's wrong, and him not being able to understand what mommy is saying when she's rocking him is desperate attempt to settle him down. It's terrifying that I cannot warn my son when something is dangerous, because he just can't comprehend what I am saying to him.
And this leads me to the next word....failure. I'm his mommy. I'm supposed to be able to tell him that I love him and he understand. Feeling like I'm trying and trying, with no results. Please don't interpret this the wrong way. I am not disappointed in his lack of abilities, or that he will be a baby forever. I honestly am not. I have known this for some time, and I accept and love him just the way he is.
I get discouraged with myself a lot of the time....me....not him. I sometimes feel like I'm failing him. It's very humbling how the simple things most parents take for granted are anything but simple:
-changing a diaper
-dressing your child
-bathing your child
-keeping clothes on your child(trying to keep him from constantly stipping naked)
-feeding your child
I'm supposed to be an intelligent woman: completed college, passed the CPA, almost completed teaching certification, but I am no match for a determined 5 year old that has decided having a diaper changed is not his thing! That's just the simple, day-to-day tasks, and I would give ANYTHING to be able to accomplish those with ease...without getting elbowed in the eye numorous times in diaper change attempts. I never expected it to be easy, and I am definitely NOT a saint for adopting a special needs child. I need him as much as he needs me.
If I had one wish, it would be simple. I'd wish to be able to communicate with my son. I know I do in very simple ways: hugs, singing, caring for him, but I want to be able to have a real conversation with him. I don't care if it's just one word sentences, I'd take anything. I want to know if something hurt him, or he's not feeling well.
I'm just gonna have to hang in there and keep trying and hopefully he will know that I am doing everything I can to help him.
