I have always felt a special love for St. Joseph. Our family adopted him as our patron saint when I was pregnant with our third child. However, now that we have two boys who have extensive medical and developmental disabilities, I feel even closer to St. Joseph as the perfect patron for parents of children…
Ash Wednesday is a sensory experience of something holy that’s hard to put into words. It’s a spiritual feeling made physical in the ashes that touch our foreheads. It’s a tactile reminder of the 40 days of Lent, when Catholics focus on prayer, fasting and almsgiving. Remember you are dust and to dust you shall…
In 2017, my husband and I took our son to Lourdes, on a Hail Mary attempt (pun intended) to cure his incurable genetic disease. Reader, he was not cured of his incurable genetic disease. In all honesty, I undertook that pilgrimage out of spite and bitterness. My heart was hardened, almost (but not quite) irreparably….
During his pontificate, Pope Francis often spoke of the dignity of marginalized people, including the disabled. As we mourn his passing and pray for the coming conclave, we have pulled together some links to his talks and writings about disabled people. We pray his successor continues to advocate for the acceptance and inclusion of disabled…
Lent is a time that recalls suffering with no day more poignant than Good Friday. As parents of children with special needs, our lives can be marked by suffering in different ways; be it extra paperwork and appointments filling our days, grief over our lost dreams for our children, or feelings of isolation, to name…
It’s Autism Awareness Month, and every year I’m flabbergasted by how many people still don’t know what autism is. There are so many self-advocates, parent advocates, social media posts, and YouTube videos dedicated to explaining autism, or autism spectrum disorder (ASM). There are shows with autistic characters, and yet when we go out into the…
As a special needs parent, one of the biggest struggles for me is not letting the fear take over. Sometimes, it is not letting the toll of caregiving make me worry how I will get up the next day and do it all over again. Other times, it involves my son’s medical needs and concerns…
I stared at the phone with dismay, a knot tightening in my stomach. It was ringing, again, with yet another concerned professional on the other end. I’d made countless phone calls and left messages with teachers, school counselors, administrators, and doctors. I knew they’d get back to me, and I’d talk to them, and yet…
I know how scared you are. When it comes to signing your special needs child up for sports, you find yourself imagining your physically disabled child falling, or drowning, or being bullied, or <insert some other worst case scenario here>. You know your child won’t be able to run as fast, or swim as well,…
Much of the last fourteen years of my life, the focus has been on motherhood. In a particular way, I think being a special needs parent constantly keeps my attention on being a mother, not only in the day-to-day caring of children, but also in all the doctor and therapist appointments, the seemingly constant filling…
