“If you will it, it is no dream”…Theodor Herzl
A couple of months ago I spoke about the day when Aleck was born, a very rough beginning to what has become an incredible journey. However, in the midst of all of this bad news was a very clear sign that the fate so casually dictated for this little boy was not going to be taken lying down. Even at 4 am the day after he was born Aleck told us in no uncertain terms that we were not to underestimate him, not even for a second.
Back in our Great Expectations class, we had taken during my first pregnancy we learned a technique they teach you to burp newborn babies. Since these brand new bundles can’t hold their heads up, everytime you hold them you have to support that head. With the epidural still in my system, having been thrown out of bed by a 4’8 nurse from the Philippines to go down to the NICU, I was foggy but looking forward to holding my little guy. I gave him some formula since my milk hadn’t come in yet and then sat him on my lap for a burp, cradling his chin between my thumb and pointer finger as I had been taught. Much to my surprise this less than 12-hour old baby picked up his head, turned it to the left, turned it to the right, and refused to set it back down in my hands. We got the message loud and clear from this headstrong newborn; he was in charge.
And at three months we watched him focus on that toy elephant determined to hit it and make the rattle go off (click here to see the video), eliciting my own shouts of joy and elation. Then at 2.5 years of age, he took his first unassisted steps from the coffee table across the living room floor as the tears poured out of my eyes(click here for video). At age 5 he taught himself to jump and to sit up on his own! He’s been knocking down these physical feats one by one, proving all of his doctors wrong and constantly showing the world what he’s made of.
During this past year he started getting his hand to his mouth with a swing so big I’m afraid he’s going to knock himself out with his own little fist(click here for the video). He’s been picking his nose, sticking his thumb in his mouth, brushing some of his teeth, and he’s even taken more initiative in feeding himself. I can finally sit across from him at a restaurant, putting bites on his fork, instead of cramming next to him at a booth looking like we are on some wacky mother and son date. I can even eat my own food while out to dinner while it’s almost warm! Slowly but surely and consistently he’s making progress on all fronts and we are enjoying every milestone.
Last week I had a ton of jobs and with Craig working a temp job downtown I needed to call in reinforcements. My Aunt Shelley, my mom’s sister, came over to greet Aleck from the bus and help him with snack and homework while I got ready to leave for an awards dinner for a client. While in the bathroom putting on my finishing touches, I heard them working on a sheet where they read a story and answered a bunch of questions. The final task was a “Text to Self Connection” where the reader had to apply the ideas of the story to their own life. Since the story was about a boy going sledding for the first time the question was, “What is something new you have wanted to try? What do you think it would be like?” Now I didn’t hear the question part but I heard what Aleck told my Aunt Shelley to write down. “Going up and down the stairs by myself. I would be proud.” I was struck by this comment since he doesn’t talk about his limitations or his disability at all. We always keep the conversation open for him but we try not to make a big deal about any of it, hoping that if we treat all of this as a regular part of life then he will too. Aunt Shelley didn’t know what to say at that moment so she said, “that’s a great sentence, Aleck”. And it was.
This past Tuesday I was sitting in the waiting area of the Shirley Ryan Ability Lab (the former RIC), during his physical therapy session. I always go with him into therapy but I had my camera with me and there isn’t a lot of room for parents to sit in on the sessions so I waited outside. I look up to see some familiar faces, my nephew and my sister-in-law, Gerri Persin, walking in. They normally come on Wednesdays so it was such a great surprise to see them. While we were talking, Aleck and his PT Krista came bursting through the door looking for me. About to explode with excitement, both of them lead us all to the building’s staircase for a big surprise. I turned on my video to capture every minute. With glee and laughter, we watched as Aleck, with his PT spotting him, went up and down a flight of stairs without using the banister or being held onto. Now I knew going upstairs was coming, but I had no idea going down the stairs was right behind it because going down is way harder than walking up, you need so much more control to prevent you from falling. But as this little boy points out so beautifully, he’s brave.
And he needs to continue to be brave. During winter break he’s having a gait study done where his doctor will assess the way he walks. Currently, there are still two surgeries on the table, the rotational osteotomy to get his hip bones firmly in the sockets of his pelvis, and a surgery to correct the tibular torsion or turnout of his right leg. Right now we have 2.5 opinions on these surgeries but we have about 3-4 months to gather more information. I want one more opinion from another doctor plus I need to schedule some phone calls with some moms I know who have been through the osteotomy and can tell me what we are about to go through. From my Facebook groups, I know that this will be very painful for Aleck. From the doctors, I know that we are talking about a month with casts on followed by about a month of inpatient therapy at the Shirley Ryan. Originally we were going to do it this winter but we didn’t want to interfere with school so instead, we are doing it all over the summer.
Personally, I’m terrified. In the last 18 months he’s learned to jump, to sit up, and now to walk up and down stairs. He’s gotten so fast I have to run to keep up with him sometimes. His stamina has increased dramatically so I don’t have to carry him for quite as long and his confidence is through the roof. There’s this part of me that keeps saying, “he’s doing so great, why would we want to mess with it?” Then I have this vision of this 20 something Aleck whose joints hurt with every step and worry that even though he’s doing so great now, what are the long-term effects on his body? Will he still be walking without assistance well into his 30’s and 40’s and without pain? Or will he have early onset arthritis and will life get more painful as he continues to grow and develop. They say, “if it ain’t broke, don’t fix it,” but this is more complicated than that. The present is so incredible right now I feel like I’m living my dream, but we have to prevent future nightmares from manifesting. I know it’ll take awhile to get Aleck back up to speed after surgeries this summer, but I’m hoping we won’t be starting from the beginning. He knows what he can do, he knows all he has overcome and all he’s accomplished. If muscle has memory I hope his muscles are elephants and that by this time next year he will have gained back these big wins, making us want to cheer for him all over again.