Wednesday, August 17, 2005

" "

"Well my child didn't talk until they were almost three, and he's just fine"
Well that's wonderful for him and you. But is he missing part of his brain?!!

"Well so and so had therapy and they are almost cured!"
There is no cure for Cerebral Palsy once the brain is dead it's dead! You cant grow it back and for example should your liver fail your kidney is not going to step in and pick up the slack. The other parts of your brain have jobs to do they cannot pick up all the slack. There will ALWAYS be a defect. I have accepted it maybe you should to and stop comments like that.

" I wouldn't worry so much. You worry too much"
Do I or do I address my worries more than you think I should? Are you really saying your tired of hearing it. Sorry it's my daily life. Hourly life. It's not something I can put on a shelf. It's Joseph's daily struggle.

I am glad your kid is happy and healthy and normal. Mine is not. Well he's pretty happy most of the time, and mostly healthy as in not on meds all the time. I am glad your child does not need stretches and braces and splints and therapy. I am so very glad it would be a terrible burden for you I think.

"You should have had a kid at that time in your life"
Joseph is not a burden for me. He is the bestest thing to happen to us. He has changed us in so many ways and I cannot imagine my life without him. I do all that I can for him it takes up large chunks of my life that's for sure. I don't want to fail him do you see that? I don't want him to ever ask me one day "Why cant I do this? Were there options available that we didn't take advantage of?" and I will have to look him in the eye and say
"Everyone said you'd be fine. Cured. Not to worry" cuz those people wont have to answer him. I will.

I complain sometimes. I get tired sometimes. I whine. But this is my blog here and I can moan and piss and groan here if I want. If you are my friend and I feel a bit over done helpful comments are not any of the ones listed above. If I am worried about money or time or day care or preschool I hope you just hear me out. There are not always solutions readily available. There is no pill or shot it's time and patience. That is what God needed me to get. He added Joseph to our family to teach us that. I get it. Now to work thru it.

I am very sensitive to things now. I have to be my sons feelings are at stake. People don't always think
"She cried so hard she was going to have a stroke" no that will never happen.
"Is your kid going to be a special ed kid?" maybe, maybe not.

Yes people have said these things to me of all different ages and from all different areas of our lives. Some of the comments were emailed to me recently.
It gets to me but better me than Joseph. He will encounter stupid people. Derek already has. He sticks up for his brother and hopefully Joseph's skin will be thick enough to tell them all to ... well insert what you like. He might just bite them or head butt them, he's that kind of kid.
I am just tired but there is no rest, not right now.

1 comment:

Jenn said...

You KNOW no one is touching this with a ten foot pole right? That's how all my posts are. Too much. Too big. Can't go there.

You have the right to feel any way that you do. You can't change how you feel about anything. If your heart aches for Joseph and all the things he has endured and will endure then no one or nothing can take that away. It's just how you feel! You can't like, change your emotions for God's sake. And others will react how they will react; both to you and to him and how he appears or behaves. You have the upper arm up here (is that the phrase?)...you are the one in control.
Keep doing what you are doing. Keep voicing what you are voicing. I will do the same and it won't ever change. It shouldn't ever change. Evolve....maybe.....change..probably not.
--J