When my daughter was 4 years old, she was eager to help. We wanted to find a way that would enable her help set and clear the table for meals. However, at the time she needed her walker or crutches to move around, meaning she couldn’t carry anything in her hands. We tried having her push an […]
Posts with the spinal injury tag
How Spina Bifida influences how I dress & shop for my daughter
At the beginning of summer, I realized my son had grown out of his 18-24 month clothes, and it was time to upgrade to the next size. Shopping for him was surreal. What is this uber-easy experience of walking into a store, looking for a size, seeing something I like, and… buying it? Good-ness. SO. SIMPLE. When gifting […]
Medical Supply Hack: Stand up antiseptic wipes with a simple package fold (keep them sterile)
Now that we are three and a half years into being parents of a child with extra needs, medical procedures are a normal part of our daily routine. At first, however, they seemed overwhelming. Many things contributed to moving these medical tasks from the “OMG how am I ever going to do this?” column to the “It’s […]
ReelAbilities Cincy: FIXED lit my brain & heart on fire
This afternoon I helped host the film FIXED: The Science/Fiction of Human Enhancement at the Cincinnati Museum Center as part of the ReelAbilities Film Festival. The film questions commonly held beliefs about disability and normalcy by exploring technologies that promise to change our bodies and minds forever. The story is told primarily through the perspectives of […]
Allowing children to be children, regardless of mobility
I crossed paths with the question “when is the right time for a mobility device?” multiple times today. It’s an interesting question. When really is the right time? Should we follow a “typical” timeline? Should we listen to our mommy gut? Should we be the catalyst for getting new equipment? Should we assume our medical team and therapists […]
Before I Met Her
I read an article today posted by themighty.com (My Child’s Disability is Not a Tragedy) which threw me back to my daughter’s prenatal diagnosis of Spina Bifida when I was 20 weeks pregnant. What I realized while reading this article was at THAT moment I DID believe it was a tragedy. It felt like a tragedy. It hurt. It […]
Bowling: A surprisingly inclusive sport
On Friday afternoon, Lily and my husband played hooky to celebrate my brother-in-law’s birthday. We went Bowling! Old school. It. Was. Seriously. Awesome. Why? Bowling is actually quite fun. The local place, while a bit run down, was super friendly. They weren’t busy, so they provided an exclusive toddler lane FREE of charge! Everyone could participate.
A solution for shopping with an unstable sitter (baby or toddler)
We have family coming to visit, so I did a BIG grocery shopping trip today with my son who is 3 months old. As I wedged red bell peppers and pints of blueberries around his carseat, precariously perched salad mix on a tower of condiments, and stashed chicken breast on the ledge under the cart between […]
How a sleep sack saved my daughter’s toes
When I became a parent, the last thing I expected was to have to protect my child from eating her own feet. Eating might be too dramatic of a term. Chewing on or teething on her feet is more accurate, but those terms seem a bit understated based on my experience. Most kids put their feet […]
Helping kids “Do it MYself!” with a basket
Two of my daughter’s most frequently uttered phrases are, “I do it MYSELF!” (with oomph and passion behind the words) and “I help you?” (with her head cocked to one side, blinking her eyes sweetly). She wants so badly to help and to be independent. One of our biggest challenges in helping her do things herself […]
Simplify: Use this great app to log catheterization volumes
My husband Dan and I are a bit on the geeky side. We both seek out data like fruit flies to a banana, so when we received my daughter’s diagnosis of Myelomeningocele (more commonly known as Spina Bifida), we wanted information. LOTS of it. One of my most vivid memories is sitting side by side on the couch with […]
Tip: Sew bells on socks to encourage leg movement
Two big events occurred when my daughter Lily was 4 days old. The first was that we learned she would need a shunt to relieve the pressure in her brain from hydrocephalus. We knew this was likely, but it was still hard to hear. The second was magical. She kicked her legs for the very […]