I don’t remember the first day or moment when the reality of the pandemic finally set in. I don’t remember exactly when my kids stopped going to school. The past 15 months in many ways has been a blur, but today I’m taking time to reflect on disabled parenting during a pandemic. At first, we […]
disabled mom
I Fried an Egg
Last night I fried eggs and bacon for Ian and me. I have not cooked on a stovetop without anyone to assist me in about eight yrs. I have always loved cooking, well baking if you want to get specific. When I moved at the end of the summer, I was really fortunate to get […]
As the ADA Turns 30, It’s Time to Give It Wheels
This year the ADA, which was designed to give equal access to the disabled, turns 30. Yet still, we live in a segregated society. As a person with a disability, where I live is not decided by my choice as an American but instead by the state and federal government when they decide which communities […]
Growing up with the ADA
The Americans with Disabilities Act was- and is- a revolutionary piece of legislation. It has impacted my life and the lives of others since its inception. I barely remember what life was like before the ADA, which was signed the year I turned eight. I recently had the opportunity to watch Crip Camp, and it […]
How things change: Reflections from a disabled mom about the holidays
Everything was difficult for me as a disabled mom, and I say it that way now looking back as I marvel at how I survived raising kids in a nondisabled world before access to technology afforded us some of the small luxuries we enjoy now, and before disabled moms were as visible as they seem […]
The 12 reasons why I (a mom with a disability) need elves!
I love the Holidays! I can not contain my smile when I think about them. Really any excuse to give gifts (no matter how small), cook yummy food and get together with friends and family. I love the feeling of building excitement, the day when I start getting to give the gifts I have worked […]
5 Steps to Hope
As a parent, my children luckily have not had very many occasions where they have to go to the hospital, nevermind stay overnight. I can only recall twice that my younger son has had to stay one night in the hospital. I never had to bring my older son for an overnight. I know I […]
Not in Spite of Me, Because of Me
I would like to say that having a disability and being a mother, are two unrelated characteristics about me. Unfortunately, just like all other facets of my life, my role as a mother is directly affected by FA (my disease). Some aspects of my parenting style are the same as they would be, but even […]
Mindfulness In Chronic Illness
Throughout my childhood and early adulthood, I never gave much thought to mindfulness. Even during my short foray into Soto Zen Buddhism in my late teens, staying present, being aware of my body, emotions and mentality didn’t seem like something I should give much import to. All that changed, however, at age 28. I was […]
The “Mommy Guilt” When You Have a Child With a Rare Disease
Emergencies in my baby girl’s life were something of a biweekly event. Starting at about two months of age, I rushed my daughter to the Children’s ER often for gastric issues. These episodes consisted of her not being able to keep formula/food down, refusing to eat and screaming in pain that could not be comforted. […]