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 […]
Posts with the Spina Bifida tag
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 […]
What in heck-fire is an Ability Hacker?
A “good hack” is slang for a clever solution to a problem, and “hacking” is the act of creating that solution.
I am the “ability hacker” because I create solutions that encourage my daughter to grow stronger and build new skills, and am also always on the lookout for interesting solutions developed by others.