The Children’s Healing Center is for kids. It’s in the name. When I started attending story times and movement classes with my son, I expected him to be the one making friends. I never thought it would be a place where, as a new mom, I would find parent support.
As a way to engage entire families, the Center hosted an event to welcome heart children and their care givers. My family jumped at the chance to see our amazing doctors and nurses outside of the hospital, so we signed up right away. Upon arrival we were greeted with familiar Center volunteers and some of our favorite nurses and cardiologists. I think I started crying before I had even wiped off my shoes or washed my hands. I hadn’t seen some of these people since my son had open heart surgery and here they were- ready to have some fun in a safe and clean space made for PLAY! This wasn’t a check-up or pre-op appointment. There was no blood draw or ultrasound. They weren’t going to deliver any sort of bad or scary news this time. We were simply given the opportunity to spend some time enjoying each other’s company.
We sat together watching all the kids, of varying ages, play together. I started chatting with the mom next to me. Her youngest son was about a year older than mine. Through conversation, we discovered that they both have pacemakers. We kept uncovering details of our experiences with congenital heart disease and learned that our sons have a very similar story starting with their initial diagnosis, then surgical intervention and post-op complications. I felt like I had met my mama soul mate. I couldn’t believe there was another person who could directly relate to what I had experienced (feelings and trauma I do not have the words to describe) not only as a first-time parent but also as a mother whose child has been through some life-saving darkness. This was a friendship of support I didn’t know I was missing!
Louis, age 3
TGA, DORV, ASD, VSD, pulmonary stenosis, PDA, coronary insufficiency, pacemaker dependent
Logan, age 4
TGA, DORV, ASD, VSD, Coarctation of the aortic arch, PDA, mechanical valve and pacemaker dependent
As much as I wanted to, it was hard to relate to my friends because my crash course in parenting included heart and lung bypass machines and survival statistics- things they could not imagine. Frequently, I felt myself tempering my description of my son’s wellness so as not to freak out my friends, who also had young children. This new friendship meant I had someone I could call to unload all the scary parts. Not only could she relate, but she could share her experience and sit with me in my fear. THAT IS SO SPECIAL.
Sometimes you don’t need anyone to say the one right thing. Sometimes you need someone to listen and having a friend who understands that, first hand, is tragic and priceless.
As we began visiting the Center regularly, I learned that this type of understanding wasn’t limited to families with the same diagnosis. This community has a deep understanding of medical hardships so we share in each other’s fears because we can relate. We can also champion each other’s milestones and triumphs because we can relate! Unexpected friendships forged through medical hardship. It turns out, the Children’s Healing Center has been vital to my son’s social and emotional development and to my healing as a parent.
I am happy to report that my son, Louis, attends the Center’s pre-preschool program with his pacemaker buddy, Logan, twice a week. Louis gets to walk through life with a friend who is the same kind of different as him. I don’t know how we would have found that if it weren’t for the Children’s Healing Center. I can’t predict anything as it relates to his ongoing heart care but I do know he will always have a friend with whom he can share his worries and insecurities and so will I.
How lucky we are.