Hi All!
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.
4 comments:
Hi. I am sorry Daniel's been sick--I know so many kids who have been continuously sick this winter. I am SO happy to hear he is seizure free.
I have the same exact feelings you have. I think Max is so wonderful the way he is. I just hurt for him--especially when kids make fun of his drooling or adults give him the sympathy stare. I sometimes do feel badly about stuff I think he is "missing out" on, although that is just me projecting, I know he does not feel that way.
And, as you mentioned in your post the other day, I always feel like I could be doing more for him.
But, mostly, I think he is one amazing kid. As you feel about Daniel.
Man, I wish they could have a playdate!
You put it so well Melanie. I have become a better person because of what I have had to deal with because of Evan and mostly because of seeing him work so hard and struggle to things that most people take for granted. I see Evan playing at the park and other kids go up to play with him probably thinking he is a typical kid and then I see them look at him funny after he talks to them and then they usually go off and play with something or someone else. I see kids stare at him in his wheelchair. He is in a classroom with typical kids and SN kids and these kids are awesome and I think they will be better kids because they have had this experience. But what about when he goes to a full inclusion program where he is the only SNK in the class. This is why I want him to stay in special ed until he is proficient with his Dynavox so people know that he has something to say and that he is smart. I think my worries about Evan will never end. I am so glad Daniel is working on his device. Evan has a button that says for his train to go faster, slower or crash. We are starting to use it at home in play and we have a plan to go from 12 to 20 buttons by the time school is out so we can continue working on it during the summer.
This post came right after a HUGE event for me... I was able to watch through a window while Trevy had a cluster...and see his teacher hold him JUST LIKE I DO. And watch him be comforted JUST LIKE WHEN I"M THERE. Wow..that was amazing. Blubber like a baby in front of everybody amazing. I think it always will be when there are people that have that gift of seeing our children the way we do.
Anyway...I'm so feelin' ya sister!
xoxo
...danielle
I find it almost crazy that when I read your posts, it's almost as if you are writing about Logan. He and Daniel have so much in common, but yet they're very different.
Super excited to read that Daniel is seizure free. Awesome news! I'm excited to hear more about his 'voice'. There is nothing I would love more than to be able to communicate with Logan. What steps did you have to take for them to consider the Eco-14 for Daniel?
You know, I read your guilt post the other day and it rendered me speechless. I've been brain thwacking trying to figure out what it is I want to say. Not sure that I have it figured out yet, but I'll give it a go.
I've been where you were many times and it is so easy to go there. I think it's safe to assume that we are all going to feel like that now and again. After all, we are only human, not superheroes.
It's so easy for people to say 'Ah, don't beat yourself up!". But you know just as well as I do, it's not always that easy. So while I say, have your moments of grief (there's nothing to say your not allowed), but in the same breath, you shouldn't feel like you have to justify feeling the way you do. Know what I mean?
We all love and adore our children, we wouldn't change who they are, and all the above, but.... that doesn't numb the pain. Crap, I'm really struggling to make this sound right and I don't even know exactly what I'm trying to say here. Just know, in times like these, you are not alone. If you need to scream, I'll listen.
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