Mauve

Of all the skills we have to learn as parents of medically complex children, one of the most difficult is often just finding a medical team that you trust, and that trusts and respects you as well.

Traumaversaries... those terrible anniversaries of traumatic events. As parents of medically complex of disabled children, we all have them, often linked to medical trauma that our families have experienced.

Today, we have a very special guest, Melanie Dimmitt. Melanie’s son Arlo has cerebral palsy, which isn’t a rare disease, but so many listeners reached out to recommend Melanie’s book Special to me.

For years, Cassie and her tube-fed daughter Eloise tried to accept that vomiting, pain, and hospitalization was just part of tubie life.

When Tiffany’s husband filed for divorce, she was 32 weeks pregnant with their daughter Aiyana they weren’t sure would survive to birth because of her diagnosis of trisomy 18.

When Tiffany was told her unborn daughter was “incompatible with life” because of her trisomy 18 diagnosis, she was immediately pressured to terminate. After deciding to continue her pregnancy, Aiyana was born alive—beating the odds.

Siblings of disabled children are often referred to as “glass children.” Glass because people tend to look right through them and focus on the sibling with disabilities.

Karley has always dealt with anxiety. But as is the case for many of us, her mental health took a turn for the worse when her daughter Nora was born. Because of the medical trauma that ensued for the whole family, she now deals with night terrors, panic attacks, and depression as well.

Like most other parents, my sense of identity forever changed with the arrival of my disabled child. And in many ways, it’s helped me to embrace (at least on good days!) a lifestyle I used to resent.

In this special Rare Disease Day episode, five parents share ways they have been changed by the rare disease journey, as experienced from the parent-perspective.