Parent Mentors: Support When Life Isn’t a Hallmark Card

Submitted by Shari DeCarlo, Mayfield Public Schools Parent Mentor

We did everything you’re supposed to do. I gave up caffeine, gave up wine. Ate a lot of carrots, received excellent pre-natal care. I did yoga. We decorated the nursery. We were a Hallmark card waiting to happen.

Two days after her due date, I went into labor. Four hours into labor, the nurse detected a problem. Two minutes later I was being sedated and rushed in for an emergency C-Section.  

Annie couldn’t breathe. Her lungs wouldn’t expand. We were in a hospital without a Level 3 NICU. By the time the team from UH Rainbow Babies and Children’s arrived, Annie had suffered a heart attack, a stroke, and liver and brain damage. They asked us if they should resuscitate her if she died again in the ambulance.

So much for Hallmark. We spent the next several months in Rainbow’s NICU, where we learned about Persistent Pulmonary Hypertension of the Newborn (PPHN). We learned that when they run out of veins for IVs, they shave your newborn baby’s curls to access the veins in her scalp. We learned that you can go days without eating or sleeping when your baby is on life support.

We learned that our girl is a fighter. Defying everyone’s expectations, Annie lived.

We went home with this feisty bundle of life who had decided never to sleep again. We did not know what resources were available to help her or to help us. No one told us that NICU parents often suffer from PTSD. No one told us that NICU kids are more likely to show signs of autism.

Thirteen years have passed. I educated myself. I spent years figuring out my new life and how to help Annie with hers. It wasn’t the life we had expected, but it’s a great one, and Annie is my guide.

I became a Parent Mentor because I never want anyone to experience the isolation and confusion I went through.  I want to help parents of kids with special needs figure out what happens when life isn’t a Hallmark card. I want those parents to feel strong and empowered to help their kids enter the world with courage and joy.

I am the Parent Mentor for Mayfield Public Schools. There are Parent Mentors all over the State of Ohio. Our services are always 100% free to you. We all have kids with special needs, and we are here to help. You can find and reach out to your designated Parent Mentor here on Red Treehouse.

For parents just starting this process, you’re entering a world of rich and deep supports. Red Treehouse, like your Parent Mentor, is a free, excellent tool for finding resources. I use it to find supports not only for the families I work with but for my own daughter. (Dance classes for a 13 year old with dyspraxia near me? Check!) 

And for those families spending days in the NICU, you can now find respite just steps away from your child’s room in Ronald McDonald Family Rooms. Family Rooms provide a quiet haven in the hospital where you can rest and recharge, get coffee and a snack, take a shower so you can be strong for your child. Ohio has several Family Rooms throughout the state. Find a Ronald McDonald Program in Ohio.

I’m so thankful that the world is embracing those with differences and that support is all around my family and yours.