Its been a busy week here. Poor little Daniel is a germ magnet and is catching everything possible. Not sure what it is, maybe we're making up for 2 1/2 years of never being sick! He has been sick more these past few months than I can remember any of my other kids being sick!
I can't remember when the last time was that we made it to school for a whole week, or all of his therapy sessions. I so badly want to get back on track again.
For some good news - Daniel got approval for his potty chair, so we should be getting that in a couple weeks.
We are still seizure free - I think. At least I'm not seeing anything.
We are still in the process of programming Daniel's Eco-14 to work the way we want for him and selecting a voice that will be for Daniel. I am very geeked to get it done so he can start using it daily. We practice on a few screens that we have set up and he thinks its a riot. He tells me to make his train go, to push it faster and then giggles. Then we start it all over again with him pushing the train button. I act all exasperated and say "OH MY the train AGAIN??" and he just giggles and giggles and scrunches up his little nose.
Now to address the post from the other day about "Guilt".
I don't want people to think I am embarrassed or ashamed of Daniel. That is the farthest from the truth. I could not be prouder of him. It does not bother me that I have a child that is different. DO NOT think for one minute I would give Daniel up or who he is, I just get sad because I hate to see my child struggle. I don't think he is suffering, he isn't in pain...but he does struggle, and he gets frustrated. I feel sorry because I see what a wonderful person is, and not because he is my son, but because I see past the disability. I see Daniel for Daniel. When I look at him I don't see the little boy with cerebral palsy, or epilepsy. I see a beautiful little boy full of life, just wanting to be happy.
Katy (Bird On the Street) says it in her post tonight;
"These days I think I can honestly say that Charlie himself causes me no pain. Being a mom to a disabled child is fine by me. Do I hurt for him sometimes? Of course, but my hurt is that other people won't see him as I do. I ache that the doctors are more concerned with sitting up than with the devilish grin he can give. I hate that people are worried more about walking than with his amazing giggle. I am sorry that people will be slowed by the trappings of disability and won't get to know the Charlie that I know."
Again, please don't take my posts wrong. The amount of love I feel for Daniel is awesome. When I get down its because I get sad/hurt because I can't help but think how unfair it is that he has to go through all of this. I hate that people won't see him for who he is, and they will judge him because he can't walk or speak. They are judging the book by the cover not the content, and that saddens me. They read a file and they come to an assumption of what he is, but they don't see WHO he is.
I just wish I could tell everyone that means Daniel and make them understand -
"You may not hear my words, but just look at my eyes and listen with your heart"
If you do one thing in your days to come, don't judge someone just because they are different - they didn't ask for it - inside, they are just like you and me - they just want to be accepted and heard.