A hurting heart

Tonight my heart is hurting.  A couple of things prompted these feelings.  Thursday night Jason and I got talking about Caleb going to the church nursery.  Right now he is still in the 9 month-walking room.  He will be 2 in two months.  He told his teacher on Thursday he wanted her to call me.  So she did and I came to see what was up.  He then told me he wanted to go play in the bubble room.  (obviously not in complete sentences, more like 1 and 2 words, but anyway it was very clear what he wanted) I say this to show that his mental faculties are not lacking! He can manipulate like any normal kid. :)  Then he tried to put on the water works when I said no he couldn't go play.  I laughed.

So when I drop him off in that room, a little part of my heart hurts.  We have talked to the nursery director and she has said that when he turns 2 he can move up to the 2 year old room.  (he will just skip the 1 year old room) So Jason and I were discussing what that would look like.  He can't sit in a normal chair very well at all and especially not for anything length of time.  He can't really play in a room full of kids on the floor either.  At home he can get out of his chair (it's a nice padded rocking chair) and he usually gets around by rolling to where he wants to go.  He usually lays on his side and plays with whatever he wants to.  That won't exactly work at the nursery.  So how do we give our kid a normal experience?  We are going to have to talk to them about it and discuss some of the ideas that we came up with, but for the first time I started to realize (just a little bit) what we are going to have to do for the rest of Caleb's life.  Caleb is different and has special needs, but we want him to experience everything he can.

Jason read Colt McCoy's book and back before we knew what was going on with Caleb he was telling me that the book was talking about how Colt's parents tried to prepare him for the road, not the other way around.  But I have no idea how to do that in this case.  I mean, how do I do that with a special needs child? A child who isn't like everyone else. A child who is going to look different than everyone else.  There are so many things that I feel so ill-equipped to deal with.

Anyway, I pictured him in his class, and I tried not to think about kids making fun of him.  Or not talking to him because he is in a wheelchair.  (he isn't yet but we are going to move that direction probably) The Parenthood episode this week had Max (the character with Aspergers) befriending a kid in a wheelchair.  The parents of the kid in the wheelchair brought him over and told Max's parents that he has never had a friend before.  Ugh. My heart hurts for the struggle that Caleb will have in this area.  I mean he already got the short end of the stick physically, but now this too?  Ugh.

And to top it all off we went out to eat after church tonight.  Watching my little precious boy struggle to sit up in a highchair was killing me.  His eyes were rolling around as they do when he is tired at the end of the day, and he was having trouble holding his head up. Tonight it got to me.  Most of the time I'm in "business mode" trying to take care of all 3 kids.  But for whatever reason tonight I saw it and I hurt for him.  So if that's not enough, there was a table close to us and the young girls were staring and laughing at Caleb.  Ugh.  Like an arrow through my heart.  So many things they don't understand.  So many things I have never thought about or thought I would have to prepare for.  My sweet smart boy that so many won't even want to get to know because he looks different.  He tries so hard.  He is so strong and makes his body work in the confines of it's weakness.  They don't even know! And it hurts me.  It hurts me for him, not for me.  How do I prepare my little boy for this cruel, harsh, cold world?

sigh. I guess one day at a time.  That's all I can take right now.

Moving forward we are going to talk to his physical therapist about getting him a wheelchair.  Most of the time the double stroller is the best thing for us to use since Jordyn is not walking yet.  But as Caleb gets older we think a wheelchair might suit his needs a little better.  So we are hoping that Scottish Rite or MDA will be able to help make this a possibility for him.  I would love something like the KidWalk, I just saw it on another blog and thought it would be great.   (on looking for the link I actually found quite a few videos of kids with Mito walking in them) I have also heard great things about Convaid and their strollers. But we will see what all happens in that area. Thanks for your prayers and support.

Love,
Jessica