If I write about this a lot, it is because this is a process for me. Charlie develops by inches and half-inches, not by stepping stones and stages. My development as Charlie's mom also goes by inches. Together we inch along. And a lot of times, it isn't easy.
This past several months has been hard. Charlie, somewhere along the line, became a two-year-old in his world view. This is good. He is inching along. But, being 2 is frustrating at times. Compound that with having many skills that are not up to 2-year-old level (motor skills, communication skills, self care skills) and you end up with a boy who is sometimes over the edge with frustration. Add to that little idiosyncrasies like sensory integration differences that make life a little unpredictable. Add to that the fact that this boy is not two-year-old size. He is more like three year old size. A hefty, floppy three year old. Oh, and one more thing, a pregnant mommy who is feeling pretty worn down.
It's been a challenge. And, I find myself once again at that place where I have to become okay with Down Syndrome. I can't say I am actually totally there. But I realize I am at that place. And, I'm working on it.
You see, all the above mentioned factors are making for a life far from normal these days--especially during the summer when we are supposed to have free time to do things like go to the park or beach.
I've had an incredibly hard day today because, well, I'm a little bitter about something. You see, I've been invited to meet up with friends at a river spot. My one problem, Charlie. I don't know if I can go because I don't know if I will be able to handle him alone. What if he runs off as he is prone to do? What if he decides he is overwhelmed and will not walk on his own. I can't carry him anymore. I can't simultaneously contain Charlie and all his emotions and subsequent actions, and supervise my two-year-old son, who although very independent and amazingly compliant, is still just two, with two-year-old impulses and two-year-old common sense.
I want to see my friends, to get out of the house, but when I have Charlie with me, that means needing safety and options and easy access and an extra set of hands. And well, it is things like this that make me look at "typical" four year old boys and imagine all the "normal" I am missing out on. Ya, I feel a little sorry for myself, I guess.
It is hard to say, or hard to describe. I love my boy. I love him just as he is. I often say every household should have this gift--this gift of Special Needs. It is wonderful. But, it is sometimes really hard, and often requires energy and courage that you just don't feel like finding some days.