"Acceptance"

Recently a website posted this question. "would you abort your baby if you knew it had Down syndrome?" Some of the ignorant replies were just plain maddening! "Yes, I could't handle having a disabled child", "their life wouldn't even be worth anything." It was bad. For me, its not the question of pro choice or pro life. Its these people not wanting to be bothered by a child with special needs, not realizing your child can become special needs at any time!
So here's my question to these people...what would you do if your healthy baby was born with the cord wrapped around its neck twice? She/he came out blue, and had to be resuscitated, and you didn't know until the baby was older that she/he has cerebral palsy? Would you put a gun to that baby's head and pull the trigger, because they were no longer "normal"?
What if your 7 year old was hit by a car on their bike? They ended up paralyzed from the neck down? They need a ventilator to breathe for them because their chest muscles no longer work. Would you then put a gun to that childs head?

When Jaxson was born and we found out he had Down syndrome, we embraced it. There were no tears, no mourning the loss of a healthy baby. I know that is not the norm, and I'm not really sure why neither of us had those feelings.
But I know what its like to have a child, and then suddenly have them nearly taken away, left severely disabled. It sounds strange, since he had a disability, and multiple medical problems at birth. Jax suffered his brain injury at 6 months old. He had already been in the hospital for two months, and was in for another two months after the brain injury before going home. It took us a while to see how debilitating the injury was. After all, he had been intubated and sedated for 4 months, so he was going to be quite behind where he should have been.
There are some children with Down syndrome that can't walk at 6, but I don't know of any that are like a 2 month old baby.

Sometimes it can by hard!
Yesterday his bath was an utter disaster. He made his GJ tube bleed, because his hands go right for it when its uncovered, and I don't have 12 hands to hold and wash. Because of his blood thinners it bled like crazy! I didn't really want to bath him in bloody water, so I let the water out, and tried using a cup, dumping fresh water on him. My back was screaming at me as I tried to hold his head up out of the water and wash his hair. To top it off, I nearly dropped my total dead weight 6 year old's slippery little body getting him out!
People were so kind, they were asking if I had a bath chair, or nursing for Jax. My mom said she wished she was closer so she could help. The thing is, no amount of help is going to make his bath easier. I could have ten people standing in that bathroom, it doesn't change the fact that having a child with severe delays just plain sucks sometimes! The bath chair is a great idea, but it sits down in the bathtub, so I still have to lift him up and out, and I still have to break my back bending over the tub.
Ideally, I would have the money to build a house all Jaxson friendly. I would put oxygen and suction into the walls, and he would have a custom bathroom, with a bathtub up off the ground at my standing level. But we all know that it will never happen, so we just do the best we can with what we have.

On the flipside, when Jax accomplishes something new, the victory is much, much sweeter! You know if you have a child with a disiblity it makes all their accomplishments more exciting? Well, times that by ten! That's what its like with a child that's severely disabled!
A couple years ago, right around the time we brought Arina home, Jax started grabbing his oxygen tubing. This was huge, as he had never held, or reached for anything with his hands. Now he will grab any tubing within his reach. He reaches down by his side, because he knows that's where the tubes sit. It very repetitive  he grabs the tube, pulls it up and lets go. Over and over again.
Last night Ray found a toy that I had been looking for ever since we moved. Jax best buddy Gavin sent it to him. I had been wanting to try this toy with him again, because its long and easy to grab. Its super soft plastic, so if he drops it on his head it won't hurt. I haven't been able to find it anywhere, so I was excited when Ray found it.
I gave this toy to Jax, and watched. He grabbed it when I put it down by his side where he normally grabs tubes. But when it ended up over his head, he reached for it!!!!!!!!
He knew that toy was above his head, he looked for it, and he reached for it!!!!!!

Sorry, its hard to see the pictures because the blanket is so colorful, but you can clearly see him reaching and grabbing.
You don't even know how huge this is! It shows that he likes this toy, that he prefers it, and wants to play with it!

Even turning his head to find it!

Jax is like a 2 month old baby. He is almost 7 years old. He can't sit up, he can't even really hold his head up. Carrying him is like carrying a big, floppy doll. Jax doesn't play with toys, he can't talk or sign.
Showing us that he likes this toy by grabbing it over and over is huge!
I'm so proud of my warrior boy, and I just wish that people would understand that yea it sucks sometimes! It can be so hard, but its oh so rewarding!
More rewarding than any job, car, or other material thing that seems to be so important to people. If only they could experience true joy, maybe, just maybe they would understand!
Understand that you don't focus on the hard, you focus on the happy. I would much rather sit all day and kiss his tiny piggy toes, than go to any corporate, high power job!
If these people could have been in my house last night, while we were all jumping and dancing, watching Jax play with this toy, I guarantee there wouldn't be a dry eye in the house!!
We'll teach them, we will. One person at a time!