My Life as a Fraud

(Posted on behalf of the original author anonymously)

Most of my life I wore my heart on my sleeve. I was an open book and comfortable being authentic. I had two degrees and a successful marketing career. I made friends easily and was blissfully confident in myself and my abilities. I had always worked hard, tried to “do the right thing” and treat others well. Until I became a special needs parent with my second child.

We knew about the severe hydrocephalus before she was born. At six months I worked from home on bed rest after convincing my OBGYN that I was much better off doing my job from bed than consulting with Dr. Google for the final three months of my pregnancy.

We had to deliver her at 37 weeks due to the severity of the hydrocephalus and spent 6 weeks in the NICU. Her hydrocephalus caused some of the bones in her skull to fuse prematurely (craniosynostosis). She endured 4 brain surgeries by the time she was 6 months old. She wore a helmet to help reshape her skull after cranial remodeling surgery.

Her first set of wheels!

Emersyn has been so excited about getting her wheelchair, she has been telling anyone and everyone within ear shot.

The truth is we all have ideas about "disability" and what it means to be "disabled." What are your first thoughts when you see a person in a wheelchair? What about when that person is a spunky 3 year old? Many people are fixated on milestones and the thought of their child not being "typical" can be very challenging. I see it over and over again in our HIE community. What if my child can't walk? What if (gasp) they end up in a wheelchair?

With her son in the NICU, Margaret Stuart stumbled across her new support network while searching for any information she could find about HIE.

Margaret’s son, Merritt, suffered HIE at birth and has since been diagnosed with cerebral palsy, and has a charming personality that wins everyone over immediately.

A Google search turned up Hope for HIE, and Margaret immediately found a support network that has grown in the four years since, especially when she attended an annual retreat and was able to meet fellow HIE families in person.

A motto of so many of our HIE families is that hope is in the journey.

For Gabrielle Shimkus, finding that hope has been a process over the last two years since her daughter Harper, the last of five children, suffered HIE at birth.

HIE didn’t stop them from trips to the beach, visiting family miles away and the Jersey shore vacations they had envisioned taking as a family.

And after losing their son Jacob, Dawn Carofine cherishes those memories.

“The memories we made are just another way to keep Jacob’s memory alive. I’m not able to see the ocean without thinking about him. His life was too short, but I know that we had always done our best to make happy memories together,” she said.