We had to push the cart uphill. The nearest handicap space at our local market sat atop a slight incline. As we approached it, I asked Jordan if she wanted me to take over.
“No, Dad. I can do it,” she said.
And she did.
As she heaved the cart and navigated a few curbs and obstacles I placed my hand on her back for support. Beneath her well-worn purple hoodie, I could feel a network of miraculously strong muscles working to will herself up the hill. While her narrow, emaciated legs flopped forward and clumbered on and off a semi-straight line, her core was drawn in and engaged. She used her arms to provide stability, hanging onto the cart’s handle. And she made it to the car on her own to deliver our culinary payload.
This is Jordan at work. She humbles me with her quiet, extraordinary strength—a strength that propels her through otherwise ordinary days.
This trip was her idea. We decided to bake cookies for some friends this holiday season. When I noted that we needed supplies, Jordan begged me to take her along to the market. My first inclination was to say no. When she tags along a 10-minute trip can become an hour. But she loves going to the market, in large part because she uses the cart as a kind of walker. She is far more mobile pushing groceries than she is wandering around our house.
Jordan spends a lot of time in her wheelchair. It’s custom-made, just for her. And she appreciates all that she can do in the chair, but she’d much rather be on her feet. Unfortunately, her legs and her feet have grown weaker and weaker. She is not able to stand for very long. She has poor balance. And, walking is rife with serious risk. Four years ago, she ended up in the hospital for several weeks after she missed a step and hit her head during a bad fall.
Today, Jordan needs to have someone supporting her every step that she’s out of the chair. It’s either that, or she crawls on her hands and knees.
This is perhaps why the market offers so much magic for her. While she’s pushing the cart she needs us less and she can use her own two feet to go where she wants. This allure is precisely why I decided it was a good idea for her to come shopping with me. But I didn’t expect her to take the hill. The girl never ceases to surprise me. She so often makes me have nothing else to say other than, “damn!”
2015 has been a mostly uneventful year for Jordan. The tumors are stable. She has weaned off of some of the troublesome anti-seizure medications and her seizures have become less severe, though still fairly routine. But the really good news is that 2015 was a year without hospital stays. No surgeries. No weeks away from home.
That’s about to change.
Jordan is scheduled for orthopedic surgery in January. The doctors will try again to reshape her feet and give her more opportunities to be out of the wheelchair.
I’ve been living in denial.
I hate the thought of this surgery. While it is far less risky than the brain and spinal surgeries she has endured, the last time she had orthopedic surgery she experienced so much pain. As counterintuitive as it may sound, the pain experienced in recovery from her brain and spinal surgeries was very brief and manageable. In contrast, the orthopedic surgery was rough and the recovery went on for weeks. To make matters worse, she will be pretty much immobile. Both of her feet will be in casts for 12 weeks—6 weeks in non-weight-bearing casts, then 6 that will allow her to start walking again.
When she had this surgery the last time, the hardest part was getting her to stay still. She wanted to move and every time she crawled around she elevated her pain. But there was no holding her back. It was the same spirit as the girl who chose to push the cart uphill at the market. She craves independence. She welcomes every opportunity to prove that she is strong.
And to be honest, I wouldn’t have it any other way.