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 […]
Blog
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 […]
Disabled Parenting Experience Review: Visiting “Ultra-Accessible” Morgan’s Wonderland
We live about an hour away from San Antonio, Texas, and I’ve long been aware of Morgan’s Wonderland, an attraction that is equal parts playground, carnival, and amusement park. What makes Morgan’s Wonderland unique is that it was developed so “those with and without disabilities can come together.” Philanthropist Gordon Hartman developed the park in honor […]
An Open Letter to Mothers of Disabled Children
As a disabled mother, I can’t help but reflect sometimes on my own entrance into the world. As a member of several online (primarily nondisabled) parenting groups, I find myself triggered by social media posts about babies born disabled or young children being diagnosed with disabilities. As a way to process my own emotions, I […]
Why I Can’t Hold Other People’s Babies
It has been an emotional week. On Wednesday, I went to my 4-year-old daughter’s preschool to talk to three of the classrooms about my disability. I’ve done this before when my son was in preschool. It went pretty well – my daughter accompanied me to each class, including hers. We read “We Can Go Anywhere: […]
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. […]
Remembering Carrie Ann Lucas
On Sunday, the disability community lost Carrie Ann Lucas, one of its fiercest members, and I lost a mentor, colleague, and above all, dear friend. Carrie Ann was a disabled mother, activist, and attorney. Carrie Ann died because of a broken health care system that does not value the lives of disabled people. Over the […]