Just about a week ago, this time last year, we put together what we thought would be a perfect plan. Sitting around a dinner table just outside Ann Arbor with our family from Santa Rosa, CA all the way to Deansboro, NY, toasting life, love, and the Michigan football team winning their game that day, my cousin Judy made an announcement. Cole’s Bar Mitzvah would be on Columbus Day weekend next year in Philadelphia, and we were all invited. Craig and I looked at each other and wordlessly communicated, perfection, we were going. Instead of making a separate trip that upcoming summer to check in with Aleck’s upper body orthopedic surgeon at Shriner’s in Philadelphia we would bundle it all together, see surgeons and celebrate. Appointments were lined up with Dr. Kozin, the Chief of Staff at Shriner’s who had seen Aleck through the successful serial casting of his elbows when he was a toddler, something our surgeons weren’t up for in Chicago, saving him from a potentially crippling surgery on his left arm. And as a bonus, we would see Dr. Van Bosse, one of the premier lower body orthopedic pediatric surgeons specializing in Arthrogryposis, Aleck’s condition. We’d fly in on Aleck’s birthday the 10th, see both surgeons on Friday the 11th, the Bar Mitzvah on Saturday the 12th, and we’d be home on the 13th. I mean who doesn’t want to package seeing the ones you love with spending hours in a stuffy hospital waiting room with crappy wi-fi and no cell service. Got to make that silver lining happen somehow.
About two months before our trip we got the call that Dr. Kozin had to move his appointment with us to the Wednesday before. This would mean we’d have to fly out Wednesday morning to make the appointment. For those in my tribe paying attention, this meant Yom Kippur, the holiest and most sacred holiday in the Jewish religion. My mother gasped. Craig tried to find another time that would work, but Dr. K was headed to Guatemala to work with children who don’t have the privilege of hopping on an airplane to get the care they need. I tried not to think about it. We moved forward with our travel plans and in my head, I planned on at least being in the synagogue for Kol Nidre, the evening service of Yom Kippur.
But on the day of that service reality hit, and I had projects to wrap, emails to answer, suitcases that needed finishing touches, and a 4:15 am wake-up call to get us to the airport. Craig walked up to me during the day and announced that he wasn’t fasting, since it’s traditional not to eat or drink during the holiday as a way to focus yourself on atonement, seeking forgiveness, and meditation. Then he announced that I shouldn’t fast either, and I had to agree. But what I couldn’t figure out was how to handle this with Aleck. Do we tell him it’s this holiday that we are totally missing? Do I sort of fast, only having water during the day, but then how am I going to remember a thing this doctor is saying to me? Do I sit somberly on an airplane in total silence, and then constantly remind us as we go through an exhausting day of travel that this is a serious day in our religion? Yeah, that all felt kinda ridiculous. So I did nothing. And as the day was coming to an end and we all needed to grab an early dinner, I dragged our exhausted tushies to my favorite place in Philly, the Reading Terminal, where we could “break the fast” by eating our way through 80 vendors in an old train station.
While we were on the way there Aleck was playing with my phone, his entire nervous system had melted completely and it was the only way I could get him to stop crying, it had been an extremely long day. He started reading my text messages, looked up at me and said, “Mom, today is Yom Kippur! You got a message from Aunt Shelley about it. How come we aren’t celebrating Yom Kippur with Grandma and Pappa?” With that, I sighed and explained to him that it was indeed Yom Kippur, why we weren’t in Shul with Grandma and Pappa, and how I had decided not to call attention to it during our day. I just thought it would confuse him. As we were talking I started to remember the other times we’ve missed Yom Kippur, as this was our third, and I decided to share these memories with Aleck. The first time was only two days before Aleck was born, I wasn’t going to take my 37 weeks pregnant body to a massive space filled with germ-carrying people who love to hug and kiss, and I didn’t want to be that exposed with my pregnancy after what happened with our first. What if hundreds of people saw me all ginormous and swollen and then it all went horribly wrong only two days later? I couldn’t go through that again. The second time we missed Yom Kippur was after Aleck’s first hip surgery, he was only 11 months old with this giant cast that made it almost impossible to carry him, strap him in a car seat, or even put clothes on him. We certainly weren’t going to make such a difficult time of caring for our post-op baby even more upsetting, so we opted to stay in the comforts of our home, putting Aleck’s needs before our own religious traditions. Now that makes three, and all of them were for Aleck.
I thought I was going to feel very torn up inside. I thought this was going to be a flesh-eating bacteria gnawing at my gut, making it difficult to get through each step of the day. I’ve been fasting for Yom Kippur since I was 11 years old. I keep a Kosher home. I light the Shabbat candles and say the blessings anytime we are home on a Friday night. I keep Passover, which really will eat your guts away. Instead, I felt totally at peace with it all. At its core, Yom Kippur is about asking for forgiveness, but in order for God to forgive you, you have to ask for forgiveness from the people in your life you may have hurt or wronged. And one thing I know for sure, the people I had hurt the most in the past year were my two travel companions, the two people closest to me on this planet. And like those two other times I’ve missed Yom Kippur, they were there by my side because it was for the good of the three of us which is more important than anything else right now.
From Dr. Kozin we learned that his hands are doing well, there is no surgery on the table to correct them. He’s able to use his arms, though he still has difficulties with certain tasks, so a rotational osteotomy on his elbows isn’t on the table either. Aleck’s biggest problem is his shoulders, but there isn’t anything we can do at this time. There just aren’t successful surgeries for contracted shoulders that are worth pursuing. However, there is a new surgery being done where they are implanting either lat muscles or pec muscles into elbows, and there’s been some success there. He wouldn’t want us to pursue that until there’s been more of those surgeries done and they’ve gotten good results. So we are to see him in a year for our next check-in.
From Dr. Van Bosse there are a few action items to get on now, and a few ideas to revisit later. We need to talk to our surgeons here about getting the hardware removed from his surgery last summer before it starts to affect the growth of his bones. He’s also suggesting an AFO with a band on it for sleeping that could help stretch out Aleck’s tendon on his right foot and maybe correct the drop foot he’s walking with now. There is a small procedure on the table to correct his knee caps so that his legs are straight when he is walking. The doctor explained to us that it’s more exhausting to walk on bent legs and Aleck’s inability to get them straight could put more stress on his knees which would cause more problems later in life. Another procedure would be to make a small knick in his left hip joint to help it stretch out a bit to give him more flexibility. For both of those he wants us to check in after a year and a half.
The Bar Mitzvah was a blast. Cole did a speech on Jews in comedy and Aleck was laughing so hard you almost couldn’t hear anyone else. He’s now a fan of Jackie Mason and Gilda Radner, so I’m hoping we can queue those up and take a break from Minecraft videos on YouTube. We love seeing our family and Aleck got to spend some time with cousins his age that he rarely gets to see. When I watch him with my family I can’t help but see how much we are alike, soaking in the love and affection from our favorite people and letting it energize us through the long stretches of feeling isolated in Chicago while loved ones are so far away. Like little love addicts, we relish the high, and struggle with the withdrawal, it’s never enough time. And now my cousin Judy is on an oxygen machine, the stage 4 lung cancer she’s been fighting for 4 years is starting to dictate how she lives her life. But at her grandson’s Bar Mitzvah she disconnected from that machine, put on her black leggings and tall black boots, and danced the night away like only a true warrior can, determined not to lose what little life she has left to this horrific cancer. I hugged her extra hard as she called me her “Aunt Zora”, referring to me by my grandmother’s name who was like a mother to her growing up. It’s a huge compliment that I don’t take lightly and I can only hope we get the chance to road trip to West Bloomfield, MI, to spend a bit more time with her before her time is up.
