Away We Go With Gratitude

Written on 6/20 at 10:30PM…my internet went out so I’m finishing this from the hospital.

Also, if you get this twice my apologies, working on fixing all blog issues now.

As I was standing in our old apartment, the one we vacated only a few weeks ago, packing up my kitchen I fell into an interesting conversation with my neighbor, Lisa. We had discovered that building because of our friends from Bernard Zell, a local private Jewish day school, who had been living on the third floor. When we met our neighbor across the hall, a 49-year-old devout Christian with six grandchildren sitting on her back porch with her dog-eared copy of the bible.  On the surface we couldn’t possibly be more different, so I wasn’t surprised to find out that we had a ton in common.  Both passionate women in the creative arts, who love our children, and are struggling to find our steady footing during this universal journey.  In the short time we lived in that building we developed a wonderful friendship and would have open conversations about religion, god, and politics. She was helping me pack up my kitchen when we stumbled into a conversation about god and I announced how I had completely lost my faith in god once we lost our baby, of course, I mean having to labor and deliver a 34-week old postmortem baby girl is a nightmare no person should ever have to experience, right, so clearly no one was watching out for us personally, so maybe the god I once believed in isn’t a reality. With her twinkling eyes, she laughed and said something like, “yes, Lynn. No one is watching out for your specifically. You don’t have the best kid ever who’s overcome so many obstacles, you don’t have a community of people standing behind you, didn’t someone just donate this entire move to you? Oh, clearly there’s no god looking out for you and my family.” It certainly wasn’t the answer I was expecting, and it made me laugh and it made me smile.

So as we prepare for the big day tomorrow I’m already overwhelmed with feelings of gratitude. Our entire move was a generous donation from Golan movers, who had the burden of moving us in 98-degree heat during Memorial day weekend. Tonight we are exhausted from a long day at the Brookfield Zoo, generously donated by the Brookfield Zoo through Chai Lifeline. I have a phone full of pictures and videos from our Sunday morning on Lake Michigan where Aleck got to drive a yacht and honk the horn at all the people passing by. After that, we barely made it to see the Chicago Sky, the local women’s basketball team in action where Aleck’s aid at school is the team’s DJ so he hooked us up with court side tickets. On Saturday Aleck enjoyed an afternoon with my parents at their pool. The Wednesday before that he almost lost his cookies on the Condor and was dragged crying and screaming onto the smallest roller coaster in all of Great America, the Little Dipper, tickets donated once again by Chai Lifeline. And the Sunday before that he went to a Chicago Cubs baseball game since he’s a northsider at heart despite Craig’s best efforts to raise a Sox fan, tickets again courtesy of Chai Lifeline. Due to rain two weekends in a row we missed going to the beach, but he’s been at the park every other day to meet up with his buddies and spend as much time running around as possible. In two weeks we gave Aleck an entire summer so we have memories to talk about, videos to watch, pictures to share, during this rough road ahead of us. It’s already helped me putting him down for bed these past couple of nights since he’s become very vocal about his worries and fears for his surgery. I give him that space to share his feelings, I listen to him, and I make sure he knows that I understand. I tell him how his Daddy and I are going through all of this with him and he adds, “and grandma and pappa too, right?” I nod and stroke his head and then ask him what it felt like to steer that huge beautiful boat through Lake Michigan, or if he enjoyed feeding the goats or the parakeets better. He rolls onto his tummy, I rub his back, he closes his eyes, and you can feel the waves of peace washing over him.

As much as we feel like we’ve been here before, Aleck had open reduction surgery on his right hip when he was ten months old, this is a whole new ballgame. He’s not a baby anymore. Those fears can be vocalized in a much clearer manner, there’s negotiation, and I’m honestly nervous for how it’s going to be going into Lurie tomorrow. After consulting 5 surgeons, and follow ups with both his surgeons at Lurie and Shriner’s, we are going ahead with the original plan.  He’s having a derotation osteotomy of the tibia and the Varus derotation osteotomy of femur and pelvic osteotomy.  For more details click to read the post from March. We will be in the hospital for 5 days, just like before. But this time he’s going home in a removable body splint, not a cast, so there’s a need to be more cautious with him. For the first three weeks, he can’t move anything except his head and arms. Like before he’ll be in a diaper, but unlike before it’s been years since we’ve put a diaper on his tushie. We need to lift him like a forklift, to feed him solid foods while he’s somehow lying down, and to watch him carefully for bedsores. After the first three weeks, the doctor will examine him and decide the wearing schedule for the next three weeks. He might be able to wear it part-time, he might be able to start sitting up again, it’ll all depend on how he’s heeling. Once we are done with the second 3 weeks it’s time for the cast on his tibia to come off and for us to check into rehab at the Shirley Ryan Ability Lab for three to six weeks. We are hoping to get him back on his feet before school starts, but it might not happen. He might still be in a wheelchair, he might still be using a walker, and he might have to start school from home or the Shirl as our friends affectionately call it, with classwork and tutoring provided for him.

It’s going to feel like the longest summer ever, but it’s going to go by in a flash. At least that’s what we keep telling ourselves. And as Craig and I are screaming at each other over how to spell “kindergarten” for the worst last day of school sign, I know that we need to treat each other with patience and caring, as much as we need to shower it all upon Aleck. So please wish us luck, say a prayer, and if you can slip it in the appropriate context his name is Chaim Ben Mordechai v Leah.  If you’d like to help you can sign up for our meal train here courtesy of fellow Ramanick and HPHS’er Leeatt Rothschild.  Thanks Leeatt for your help!