In 1991, my husband Marc and I brought our newborn baby girl home when she was 9 days old. At the time, we lived in an apartment with several steps to enter. This was just the first of many challenges I had to navigate as a disabled parent. I was born with Larsen’s Syndrome (LS), […]
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Making it Work: Caring for an Infant as a Mom with SMA
I certainly thought I knew myself as a parent, before I was one (ha!), better than I did. This has by far been the greatest, best, most difficult and even most anxious time of my life as a settle in. My current anxiety is about Gia becoming mobile. I already have help and am never […]
Diving in, Wheelchair First
Dreaming of becoming a parent chooses you. You don’t get to choose the journey. With Spinal Muscular Atrophy (SMA) and using a power wheelchair while requiring care for my basic needs, many would think being a parent wouldn’t be a dream I’d have, let alone pursue. I am a mother to a nearly 5 month-old […]
Reflections From Parenting With a Disability
On a recent visit to the doc’s office that coincided same week my daughter returned to school, I welcomed verbiage bestowed upon me that included the following: “You lost 2 lbs, you have such white teeth, you don’t look old enough to have a child in college.” *Thinks well, it don’t crack* A bit less welcomed however […]