A little glimpse into life

People often ask me how I parent a child with development delays. How I find the energy day in and day out.

Here is a teeny tinny glimpse into our life. Most days, this is what I say over and over:

Joe - there is a step. Go up.
Joe - hold onto the railing and look forward
Joe - you're going to fall. Look at the steps
Joe - chew. Take bites (as I mimick what that looks like for the thousandth time)
Joe - sit down. You will fall.

In all honesty, this is not something I had ever imaged my life would look like. I don't think I every realized the amount of energy I would have to muster up each and every day to be the brain for my child. His external brain. The brain that helps keep him safe.

You know that feeling you get when you are about to fall and it's that feeling that makes you grab the railing, the feeling that makes you step back. Josiah doesn't feel that. He does not understand proprioceptively that his feet are not on even ground. This past weekend he fell down our front porch stairs and chipped both is two front teeth. Rick and I were literally 4 ft away and it happened that fast. We saw it was going to happen - you see his little feet hanging off a step and you can see his body stay stiff and fall.

Echolalia is something I had never heard of ever until last year. A child can say hundreds of words but when you stop and listen, you realize that all they are actually doing is echoing what they hear with very little comprehension of what it means.

Most days I get up and am discouraged. Alot. Simple things take so much energy when helping a little one function in such a fast paced world. Most days I honestly feel like I am running uphill all day getting everyone to their therapy, speech, PT, OT, etc... each and every week.

I have to really stop and realize that sometimes, in the midst of the clouds, I see a little being - so tiny he's in the 2% for height and weight - taking on the world, pretending he has muscles like Lucas, thinking he is a big kid like Ella and trying to mimick her. I see a little guy so determined to do it - to do something I know he really can't. But he doesn't know that and it doesn't stop him. Sometimes I have to look really hard but there is light and their is  hope. And most days, I have to rest in that.