Holy cow, it’s October and we made it. I’ve been waiting for this month for so long and it’s everything I wanted it to be, and even more. Aleck turned seven this month so I’ve decided it’s not only a lucky month, it’s going to be a lucky year. We have no surgeries on the horizon, nothing heavy hanging over our heads, and we are finally settling ourselves into our new place since we moved only three weeks before the big summer surgery. When I walk into the door I can feel my whole body settle, and I want to cozy up with my boys and enjoy the space around us. On Sunday, after an evening of organizing, I looked at Craig and said, “I finally feel like I’m home,” and I kinda never want to move again. In fact, I’ve been having moving nightmares about once a week for the last six weeks, each one ending with me shouting, “but I don’t want to move again.” Yup, two moves in 11 months are definitely my limit.
Aleck’s walking has been getting better and better. At the beginning of the month, we met with his surgeon and she cleared him to stand and walk without his AFO on for short time periods. That might not sound like a lot but as far as daily routines go that is a game changer. It’s as simple as he can stand on his bare feet to go to the bathroom in the morning without the whole rigamarole of getting him dressed and in socks, his AFO, and shoes. He only has to sleep with his splint three times a week and she commented that he was healing way faster than expected and making better progress than she’s ever seen this quickly after surgery. Well, he is kinda an overachiever 😉
A few days later they had picture day at school. Aleck had missed the first picture day because he was sick so this was the make-up day for students who missed or who weren’t happy with their picture. When we clicked on the link to see the proofs my jaw almost dropped to the floor. I mean, why didn’t his aide take him out of his chair, right? Or why didn’t Aleck tell them that he could stand up? I’m guessing he went with the easier way of handling his photo, but when I saw this proof my heart sank to the ground. Not only can you see his chair, not only is it intersecting his head, but he also looks sad and tired. Put all of those pieces together and I wanted to cry when I saw this. Immediately I called the photographer, this isn’t my kid, and what can we do to fix it. Funny, as a photographer myself I became that mom very quickly, asking if they could retouch the push handles out of the frame and asking if there were any photos where he didn’t look like someone had drugged him. The photographer was very patient and sweet with me and offered to retouch out the bars for no extra charge. I thanked her and then felt the need to explain. Thank you so much for all of your help on this. I know I’m feeling a bit sensitive about the chair. When he was born the doctors told us that he wouldn’t walk or use his arms, so I imagined a life in a chair for him. Then he started walking on his own at 2.5 and we were over the moon. Now he’s getting back on his feet after surgery and the chair just brings all those old nightmares back for me. When I wrote those words to her I felt confident that what I had said was true, that this is only a temporary part of his daily life, I could never have imagined how right on I really was.
His walker finally arrived two weeks ago and Craig looked at me and laughed. He’s only going to need this for a month at most, he said, and it took three months to get it. I said really, you think? And he said he might be exaggerating a bit. So last week we brought his custom-built walker to school with instructions that he is to use that walker as much as possible. This morning Craig checked in with the school counselor to see how it was going. She reported back to us that when Aleck arrives at school his chair gets put aside and he is on his walker for the entire day. Which makes perfect sense since when we woke up this past Sunday morning we had quite a startling sight before our eyes. There stood Aleck, at 7:04 in the morning, right in front of my face. He had wiggled out of his splint and still had the black wrap around his right leg. No AFO on, no shoes on, no walker, and he wasn’t holding anyone’s hand. Craig and I were both half asleep so we probably didn’t give him the fanfare he deserved, and then Craig told him to go potty. Aleck turned around, walked to the bathroom, pulled down his undies, and went all by himself. He even pulled them up when he was done and Craig met him in his room. This is all really fucking awesome. We had been pulling everything up and down for him for the last two months, wanting to be sure he felt steady on his feet. After the first two weeks of school, when Aleck had been spending so much time in the chair and we saw his walking take a nose dive, I was doubting he’d even be close to full strength at the 6-month mark of January 21st. Now I am thinking he isn’t going to be on this walker for very long, maybe only use it when he’s in the hallways, lunch, and outside, more so he has the extra protection against other children who don’t always look where they are going.
Watch a video of Aleck walking in our home right here:
Since Aleck has therapy three times a week at Shirley Ryan he’s often got an 8 am physical therapy session on Saturday mornings. I’ve been working every Saturday since these sessions began so I haven’t been to a single one. This Saturday I took advantage of my day off and got to see Aleck in action for myself. That was the first time I realized that it’s not a mirage, it’s not a fluke, Aleck is really walking. His first activity when he arrives is to walk around the floor, and that’s become so common that his therapists are throwing obstacles in his way to keep him challenged. There are tubes to step over, toy cars to avoid, and she even starts to push him on either side while he’s walking, forcing him to keep steady. My first instinct was to run in and pick up all the stuff on the floor, the therapist practically had to restrain me, explaining that he would simply walk around it. Even pre-surgery me would have run in and picked everything up, always worried about Aleck falling, his fake front tooth a permanent reminder of his 6th birthday. When they were done with walking they moved to the stairs and it was awesome to see. He knee no longer juts out to the far right, throwing his balance off completely. In this video, he’s holding the therapist’s hand and then finger, but later in the session, he’s doing it only holding onto the railing. Unfortunately by the time I decided to record that moment he had hit his limit and had a meltdown. His hands get really sweaty, they always do, and it’s hard for him to hold onto the banister without sliding right through it. And as he’s crying there, melting completely, we decide that he did great, 3 full rounds of stairs, and it can be time for him to be done with that activity. With tears in his eyes, he sees an older boy is being wheeled by in his stander, this boy’s feet aren’t even touching the floor. He looks at Aleck and in a slightly garbled voice he says, “I believe in you, Aleck.” That’s right my sweet boy, everyone is rooting for you and you give us a lot to cheer about. We really are lucky, aren’t we? And very, very proud.
To watch videos of Aleck in therapy working on his mad skills click here: