Picking out a wheelchair with your daughter is a lot like picking out a prom dress – there are loads of choices, it doesn’t happen often, you imagine the time she’ll have in it and hope it’ll be magical. And then it has to fit well, of course, and ultimately you want her to look radiant (but, naturally, there are going to be some fights). I had to miss this milestone earlier this month because I chose to go see a client instead.
I don’t feel good about missing it, but I recently became the CEO of an ad agency, and though I’ve been juggling a demanding work life with a child with severe disabilities (and a two-year old, too!) for several years now, my new responsibilities are creating more challenging choices. Catherine, who’s six, doesn’t walk or talk yet. She has cerebral palsy, a seizure disorder, gets fed through a tube in her belly, is blind and recently had a major hip surgery to put her femur back in the socket. She’s outgrown her modified infant stroller, but we had to wait until after the operation to get a new one because her hips are about 1.5 inches wider due to the hardware the surgeon installed.
Last week, I got the appointment reminder for the wheelchair clinic, which I’d forgotten to put in my work calendar. I quickly checked and realized I had a lunch with one of our key clients – three hours away. There was no way I could do both.
“I could reschedule the client trip,” I told Brian, my husband, who stays home to care for our two children full time.
“Do what you want to do,” he said.
“Well, I want to go to the wheelchair clinic, but this meeting is important.”
“It’s up to you.”
Brian rarely tells me what to do. That has become my agony ever since Catherine arrived 15 weeks early. I’ve had to struggle to figure out how to balance not just work and life, but work and severe disability and life. People tell me I’m good at it; I’m never quite as sure.
I knew that picking a wheelchair often takes several visits since you try many and still frequently have to order one in your exact size – just like a prom dress. I decided to keep my meeting with the client and vowed in my head to make the next appointment.
I drove three hours into the mountains, which normally makes me very happy, but I kept thinking about Catherine and her appointment. I watched the clock, thinking about when they’d arrive, wondering what was happening and how it actually worked in the “wheelchair clinic.” But I let that go as I met the client for lunch. I had learned during the life and death crisis of Catherine’s first few months to compartmentalize my work and this life. I think that’s part of the reason many find my balancing act successful.
When Catherine was born at 25 weeks, weighing just one pound nine ounces, a woman at work gave me some advice: “Be with her,” she said. “When you’re at the hospital, be at the hospital. When you’re at work, be at work. Don’t try to blur the two, like I did. I tried multi-tasking,” she said, “and it was a huge mistake.” She explained that when her 11-year-old daughter was dying of leukemia, she thought she could send emails from her bedside and take calls while she waited on doctors. “I was wrong,” she told me. “It’s one of my biggest regrets. I wish I had just been with her.”
I listened to that advice like it was her dying breath. When I was with Catherine in the neonatal intensive care unit for 121 days, I was with her. When I was at work, I worked. I didn’t call into conference calls from Johns Hopkins, and I didn’t schedule therapists from the office. I compartmentalized. And now it’s just how I live – but I guess it’s what makes how I live work.
I left the client meeting, frustrated by the conversation. It wasn’t a good one, and I had to figure out how I was going to address the concerns back at the agency. I took a break from those thoughts to call Brian and find out how it went at the wheelchair clinic.
“It was fine,” he said. This is Brian’s answer to everything, but I wanted details. I wanted to know how it worked and what they did and what we needed to do next. I wanted to be there.
“We wait until it comes in,” he said.
“What do you mean?” I was confused.
“We ordered one. They’ve started the process to get it here.”
WHAT? I screamed – but mostly just in my head. Instead I said, “Well, does it fit well? How’d you pick this one? How do you know it’s going to work for her?” In my head, I had a long list of questions that would come out of my mouth like bullets from a machine gun.
“If you have all these questions, you should have gone. You should have been there if you were going to do this! Don’t yell at me about it.”
“I wasn’t yelling. I was just asking questions. Don’t do this Brian. Don’t make this a fight. I really wasn’t yelling. I just wanted to know.”
“OK,” he said, and we agreed not to fight. I hung up and drove home through the rain wondering what the wheelchair looked like and whether it would work. I decided Brian would probably order black or navy so it wouldn’t draw any extra attention to the two of them when he pushed her. Though Catherine can’t see it, a friend of mine and I decided shortly after we learned Catherine was blind that she should have cool wheelchairs because it affects how people interact with her. I couldn’t do anything about it, though, and I figured the black or navy would at least go with whatever she was wearing and look sophisticated. I compartmentalized and went back to work in my brain and made some calls while I drove and then thought about the problems the client had given me to solve.
I pulled into the driveway at 7:15 p.m. After the evening transition and getting the girls ready for bed, Brian and I settled down to dinner, an hour later. We flipped on a recorded episode of House, and as the intro was starting, I sheepishly asked, “What color is it?”
“What color is what?” he answered.
“Her chair. What color is her chair?”
“Oh – fuchsia,” he grinned. A moment later he added, “And I’m pretty sure we ordered a green seat cushion.”
“Oh,” I said.
My daughter just got her first prom dress. It’s fuchsia and has a bit of green on it.