"Picking Out A Wheelchair With Your Daughter Is A Lot Like Picking Out A Prom Dress"

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.

Moore’s story’s a painful one, because it’s all the guilt of any working mother, but to the tenth power. While her husband is able to stay at home, Moore feels the shame of missing milestones — like the wheelchair — and neglecting the many duties of caring for Catherine. But the advice she gives for juggling the two major demands of her life is applicable to any working mother’s life — or, indeed, anyone’s.

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.

While it helps to have a parent at home to allow for this compartmentalization, this is also just a practical strategy for modern living — sane living, at any rate. Even without Moore’s “more challenging choices,” working mothers deal with guilt and judgment, and as this author finds, it’s imperative not to let that poison the living of life. Ultimately, hers is an uplifting account. Not just because her husband buys and fuschia and green wheelchair in her absence — although he does — but because it’s a success story. It’s a small incident in the long series of incidents that is her life, but handled with compassion and sense. Guilt comes; she wrestles with it…and it’s okay. That’s a good way to start the week.

Parenting A Special Needs Child As A Working Mom [Babble]

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