I have to say I’m feeling pretty guilty about not having a blog all prepared for Aleck’s first birthday. So many different ideas crossed my mind. A beautiful soliloquy about how much better the world is with him, a speech about how scared we were when he was born and how much strength he’s given us, or a simple list of all of the medical and hospital brew ha-ha we’ve endured in one year. Needless to say none of these things got done since, as always, we have our hands full.
On Tuesday Aleck got his cast off and he’s been feeling pretty brutal ever since. His legs, hips, and waist are really sore and tender to the touch. He was so miserable and unhappy on the way home that he threw up in the car while crying, all over his Iron Aleck onesie. They fit him with this brace that’s supposed to keep him more comfortable, though he seemed much happier without it, and his new set of shoes and bar are so wide to accommodate how wide his legs are in the brace. When we got home Aleck performed his own version of Les Miserables, crying practically non-stop, refusing to eat, take his bottle, anything. I broke down and switched from the tylenol to valium and lortab and we were a much happier camper. So happy, in fact. he practically slept through the night, only waking up after all the drugs had worn off asking in his own special way for another dosing please. In the last 6 weeks that was the third best night of sleep we’ve gotten. Nice.
For his birthday we had a very special day planned. First we went to the zoo, then apple picking, and finished it off with a huge party where he shoved his face in some yummy cake. No, wait, not even close. We checked into the Rehabilitation Institute of Chicago for Aleck’s first birthday and tried to make it as special as possible despite the circumstances. Craig got cupcakes, my mom got decorations, my dad brought dinner, and my aunt brought some fun toys. He was so miserable by the time we got to cupcakes, it was a pretty brutal site. Poor little man was so overtired from the day, still in so much pain, and just ready to get his heavy drugs and crash. I think he enjoyed the couple of licks he took of the cupcake frosting, but enjoying his new toys wasn’t anywhere on his agenda. All in all, it was pretty depressing.
Not that starting this program is a bad thing, in fact, I’ve been trying to see if we can stay here even longer, get the most out of everything they have to offer. The facility is quite nice, the therapists are super sweet, and the location is just amazing. But what a way to celebrate. In a new place, surrounded by people you don’t know, getting ready to work really hard for the next few weeks. I’ve constantly found myself tearing up, and think I’ve figured out what’s bothering me, why I’ve been so weepy during this huge celebratory milestone.
The fact that the first year of Aleck’s life is behind us is a huge relief. I still feel like I’m in the spin class, but now I know when I can go back to a sitting position for a little break, still moving but not nearly at the same pace as we’ve been moving for the past year. No more 7:30 AM casting sessions at Children’s, no more entire days blown in orthotics, no more hip splint adjustments, no more sponge baths, no more casts, no more waking up from anesthesia (until the metal plate is removed), no more neurological testing, no more X-rays, no more ultrasounds, no more MRI’s, no more upper GI’s, no more scopes, no more scars, for now.
Now is the time to focus on therapy, on movement, on mobility. Now is the time to set goals and devote our energy to getting there. Now is the time to incorporate a little more fun back into all our lives. Maybe what’s been so depressing for me about Aleck’s first birthday isn’t the lack of a celebration, or the general anti-climatic feeling about reaching this moment, but maybe instead it’s the exhausting release of a year filed with more stress, more pain, more worry, more loss, and more heartache than I ever could have imagined. It simply wasn’t a very happy year.
For the high holidays I was able to drag myself to Yom Kippur services and listened closely to the rabbi’s wonderful sermon about attitudes and outlooks on life and one thing really resonated with me that seems to explain how we’ve made it through, relatively unscathed. The rabbi said, to paraphrase, happiness is fleeting, it’s the joy we have for and in life that doesn’t go away. And when I think about how we have made it through all of this, how Craig and I are still happily married and even closer than we were before, how we’ve managed to avoid being locked in the nuthouse, and how we’ve kept a mostly positive outlook while facing a constant stream of bad news, I have to conclude that our lives are full of joy. Joy for each other, joy for the world around us, and especially joy for the adorable little man with the gummy smile sleeping in the crib next to me snuggling his stuffed animals. Yesterday he turned one, but this year we won, two good feet, two good hips, and one family surviving it all together.