There it was again as I shot out of bed this morning, that cold steel vice squeezing my heart, my lungs, it felt like I couldn’t breathe. I got out of bed and wandered in the hallway trying to figure out if I needed a shower first or a cup of coffee, so instead I strapped on my sneakers and went for a walk, letting Google dictate my frame of mind. Burning Down the House was definitely an appropriate first step as I started to move my feet, but by the time Criss Cross was making me jump, jump, I knew I had to do something. I was about to hit send on my call to Craig when I got into an altercation with a Chicago Park District worker. He was about to drive up on the running path and I wanted to let him go before I continued my walk. Well, he wasn’t having it, and after making me walk ahead of his truck he rolled down the window to yell at me about having headphones in, which way he was pointing, and all sorts of other stuff that I really couldn’t give a damn about. No sooner had he pulled away did I find myself reduced to a tornado of tears, I barely made it to the nearby bench. At first I just desperately didn’t want him to see me, because I didn’t want him to think that he was the reason why I was crying and I didn’t have the energy to explain that he was simply the catalyst that forced me to sit and face my feelings instead of jump, jumping them away. Aleck is coming home today and I’m just a mess.
For starters, his evaluation for outpatient therapy isn’t until Monday, WTF! (Aleck still thinks this stands for “why the face”). That means a week until therapy and then who knows how much longer to get him on the calendar for regular therapy sessions. His PT says he can stand unassisted for 4 minutes but I know that when I took him to go potty in a restaurant bathroom on Saturday it was really hard to get him calm enough to stand and go pee, and sitting isn’t a great option since his tushie is so little it goes right through the seat. After a few panicked phone calls during my walk, which let’s face it, had now turned into a cry on sneakers, I was able to get him evals for tomorrow morning. That’s one problem solved.
But now I need to go home and take my house apart. We need to pull up all our rugs so Aleck can use his walker, hell so we can push him in the wheelchair, from one room to another. He’s gotten kind of good at his wheelchair, using his arms and hands to tool around the floor at the Shirl, but there is very little room for him to tool around here. In order for him to even get into the living room, we are going to have to take our couch apart and try to make it so he can reach his toys and get comfortable to watch TV and play video games. Even after the rearranging, he will need us to get him on the couch, to get him his toys, to keep him entertained during these next two weeks before school starts. It’s like baby Aleck all over again, but with a serious Nintendo addiction, which is going to be a whole other battle around the house since his screen time is about to take a bit of a nose dive.
Then I start to worry about back to school. About him telling his aide in enough time that he has to go potty so that they can get him to the bathroom and get him upright to pee, or sitting down without screaming to poop. Bending his right knee is still difficult and that leg is still tender, it’s not even close to full strength and just the weight of his foot dangling can be too much for him after a few minutes. We’ll have to find a step stool or something to put under the toilet just so that his feet have support when he’s pooping, something we might need to bring to school as well.
For now, we’ve got two long weeks at home, driving him back and forth to as many therapy appointments as insurance will cover before he starts school. We have to teach him to tell us when he has to go potty and hopefully he will learn quickly so he doesn’t have accidents at school since he’s used to a 6 second reaction time between telling us and getting him to a bathroom. We have to go to bumble Illinois to pick up a loaner walker while our insurance hems and haws to get us our new one, made to fit Aleck. And while all of this is happening I have a business to run, a business I love, and a business that I want to get a lot of work done on in the next couple of weeks. But it’s not like I can grab my Burberry Trench Coat, my Samsonite leather briefcase, and walk out the door to head to my office downtown while chaos ensues at my house. The furthest I get is to the third bedroom, connected to Aleck’s bedroom, to try to block everything else out. Craig and I can’t both be dedicated to Aleck full time if I want to keep my business, but until he goes back to school it’s going to be very difficult to concentrate on anything else. One thing I do know is that my photo shoots on location are going to feel like a welcomed distraction from everything Aleck at home, so don’t be surprised to see me geared up and grinning ear to ear.
Click here to Aleck’s Progress on the Walker