03 March, 2009

Things to Do

It's always interesting for me to see my life through other people's eyes, or at least how I perceive others perceiving my world. Sometimes it's a great feeling; like when I found out that I was a nice person in first grade, or that someone always thought I had a good heart in high school. Or it is just sort of an uncomfortable feeling, like when my really neat, organized friend comes to my house the day before the housekeeper comes and sees how messy our house really can be.

Other times it's more difficult for me, mostly when I see the things in my life over which I have no control and the things I feel are out of control in my life.

My parents came to visit this weekend, and honored my son by visiting the classroom where he has been for two and a half years. I think it's a hard thing for grandparents to face a grandchild's disability, mostly because it hits them twice, the first pain they have is for their grandchild, and the other is for their own child.. but they went just the same, and they gave a donation to Jake's classroom which will make a big dent in the glue stick, wipes and tissue debt that Jake's teacher has each year.

We visited the library with Jake's class, then came back to the classroom while they ate pie to celebrate the bundle of joy Jake's aide is about to deliver. We sat at a table towards the back of the room at the library and later after the children were seated we declined pie, mostly so we could talk and watch Jake in his environment. Lucy was her usual self and infiltrated the classroom setting up shop next to the librarian for story time and at the head of the table during the afternoon sweet fest. 

Jake began being silly the minute he saw us all there. I could tell that he was happy to see us, and he greeted both of my parents in his own way. Sometimes this just means a pause instead of walking on by you. He couldn't sit still in the library, he grabbed the hair of one (or three?) of his friends, and continued on in his grope-y happy silly way. My poor parents. I know that Jake has better behavior in class than this. Okay, I know at least some of the time he does. I know today he went to speech therapy with his SLP and she is 5 foot nothing and weighs ten pounds less than Jake...and she took him all by her lonesome to speech with no trouble.. so I know that he is more calm, less grabby, able to sit still at least some of the time. He did use a 'talker' while he was there ( to answer YES! for pie). Heck, I've taken him to the movies, so I know he can sit still at least for a little while... but then I saw him through their eyes. They see a little boy who will be taller than most of his caretakers  within the next two years, and a boy who is probably stronger than some of them already. They see a boy who still can't talk (because he did not use any words English or Spanish while they were with him). A boy in pull ups, a boy who needs to be fed most of his food. A boy who, even in a class with severe disabilities looks like a kid who has profound disabilities. And of course they see his elfish ears and lean, healthy body and his beautiful hazel eyes (if you can catch a glimpse). Of course they see his smile, but they see the whole package.

I don't see all of those things anymore, not the tough stuff. At least I do not see them all at once because it is overwhelming to think of how many of his goals are the same goals he's had since he was three. I do not want to feel as hopeless as someone could be living with  this beautiful boy who develops so slowly I need to re-read this blog to find the changes he's made. 

We talked later in the weekend about our plans for Jake in the future, and of course I have one. I have a plan. I always have a plan. I know where everyone should be at all times.. indefinitely. And of course I have absolutely no idea what we will do, what I will do. Not. One. F*cking. Clue. I am not sure right now how to even tackle tomorrow or Friday, or summer, or swimming lessons, or haircuts, or the sprinkler system, or finding shoes that fit my son. There is a list so long, I'm not even sure I have enough ink, (or gigabytes?) Some of the things we need to do can be fixed with more time, more money or more effort, but some things just aren't going to be fixed. Some things might not even get 'better'. So there they are, those things over which I have no control... 

except I do. because I am not doing anything for Jake right now.  That's how I feel. I think I have been using Lucy as an excuse. Believing that she takes up time so I can protect myself from the fact that I am at a bit of a loss as to how to help my kid. 

and there I go again, seeing my life as others may see it, and I am having that feeling again like I cannot nail down any of the corners and the canvas is getting smaller and the frame is getting bigger and bigger. 

and now for my internal pep talk:
I have a list. Okay I am going to start a new list. On a clean sheet of paper. and I will check them all off one by one. and I am not depressed, and I will sell that stuff on eBay, and I will stop listening to the newscasters, and I will play more music and sing louder, and I will write daily because it makes me feel better every time. I will kiss my son in the morning, thankful for another day with him, another opportunity to make good choices for him and for our family. 
and tomorrow night I will go to bed before midnight.
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