Monday, August 10, 2009


“Denial ain't just a river in Egypt.”

Mark Twain

When Max was almost one year old, we had a physical therapy appointment that shook me to the core. Steve was living/working in California at the time, and I remember calling bawling my eyes out on the way home.

The therapist had the nerve to tell me that we needed to get Max a wheelchair. A WHEELCHAIR! At that time I guess I was still under the impression that we would just get him to sit up and then stand up and then walk. Why on earth would we need to get him a wheelchair? I didn't want some big clunky metal wheelchair to put my little baby in!

After I came off of my crying fit, I started to realize that I was in a sort of denial about Max's physical abilities. And that was maybe the hardest part of the whole situation. It was likely that Max would need a wheelchair...and if that was the probability...then maybe he would ALWAYS need a wheelchair. That was a hard thing to comprehend.

Max has had several wheelchairs since then. He's getting to the point where he's about outgrown the ones he has, and we'll need to get him another one. And a bigger Max means a bigger wheelchair. And a bigger wheelchair means a bigger car. And maybe, just maybe I won't be able to lift him into that car anymore. Maybe, just maybe I won't be able to lift him at all anymore.


It's back. After several years of feeling like a rock-star when it came to being a special mom to a special kid, taking him across the pond and back, moving cross-country and back, traveling here and there, carrying him around at will...I'm finding I can't do those things anymore.

Today I took Max to the mall by myself to meet my sister. As I was putting him in his car seat I thought, #1 I hope I don't drop him!, #2 I hope I don't hurt myself! #3 How am I going to get him out once we get there and back in?!

I've been going along, seeing him grow, knowing he's getting bigger, but still thinking I can tote him around like the little peanut he once was. Denying that in truth, he is much too big for me to be lifting. Or carrying, or holding all day on his attached days.

We went to the doctor last week for an exam and to try to figure out why he's been waking so much in the night, having fitful nights of sleep. We're still working on that issue, but we did go away knowing that he weighs 45 pounds. And is 46 inches tall. I am 5'4" and 130 pounds. Next year will he be 5 feet? Weighing closer to 100 pounds?

I'm sure this issue of thinking life is one thing, and realizing one day it's all together different will always be the case with Max. But for now, we got a new tool to help ease into the transitions of reality.

Last month, I was looking on Craigslist for special needs know just to pass the time. I found a Hoyer lift. These machines cost around $2,000 brand new. This one on Craigslist was $100. (Yes only two zeros) It had only been used two times before the previous user passed away. Our DME rep. told us we would need to wait a year before trying to get Max one because of all of the equipment we were needing to get this year, so we went ahead an bought this one we found.

Steve went to pick it up, and we ordered a sling to fit Max to lift him. Last week, we got the sling, and here are the results.

Here he is in his Chill-out Chair. He's not sleeping, the flash just made him close his eyes. I've got the sling under him at this point because I had used the lift previously to put him in the chair to eat, and just left it under him.

I moved the chair within the legs of the lift to get him right under the arms.

Got him all hooked in and ready for take-off.

Here's a short video of him going up...don't mind the Tarzan soundtrack in the background...we were rocking out!

And now he's up, out of his chair, and ready to be moved to the floor for a diaper change, to his bed, or to a bath!

This time, he was being put down for a diaper change after eating. Here's a video showing how slowly and gently and puts him down. And how comfortable he is with it.

It's helping. But I am still finding myself wanting to quickly move him, or carry him, or hold him like I think I can. But with every manual lift I remember, there are tools to help me care for him. I just have to move out of the way of myself and use them. They are just help in the care for Max. They are not Max. And if I can remember that, I think the denial won't creep up on me so much.

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