When You Live in Between 'Medical Life' and 'Regular Life' as a Special Needs Family

We live in the middle.

Being the parents of a medically fragile child, we have certainly had our share of crisis moments. Our daughter Abby was in the hospital for the first three months of her life, and we faced each day not knowing if it would be her last. In the two years that she lived ventilator-dependent, we had the constant fear of her catching a potentially deadly cold. Several “harmless colds” landed her in the PICU, and a case of RSV (respiratory syncytial virus) left her fighting for her life. Since Abby has been decannulated, she has had numerous major surgeries to reconstruct her chest wall, spine, and jaw. Just shy of 6 years old, Abby recently had her 20th surgery. Her 21st is already scheduled.

Julie and her family in front of a mountain landscape

But we also have many moments of “normalcy.” Our family loves to visit museums, aquariums, zoos, and other cultural events. We enjoy going to our local farmer’s market on Friday nights and chatting with friends we see there. We love singing along to musicals in the car, and we can certainly down our share of popcorn at the movie theater. We enjoy volunteering at the Ronald McDonald House as a family. Our kids play with Legos together, hit each other with pool noodle lightsabers, take turns smothering our poor dog, and get fussed at for jumping on the couch.

There are times of crisis, and there are times of normalcy. But most of the time, we live somewhere in the middle. We bounce back and forth between school and doctors’ appointments, between American Heritage Girls and physical therapy, between fencing lessons and speech therapy, between craft time and feeding therapy, between vacations and hospital stays… between our regular life and our medical life.

So where do we fit in? We don’t quite feel like we fit in with medically fragile families, but we also don’t feel like we can sit around with parents with kids our age and simply chat about soccer and homework.

We live in the middle, sometimes slipping into crisis mode, and other times dipping our toes into the “normalcy.” But we have been blessed with many special needs families we are privileged to call friends. They have encouraged us, cried with us, and empathized in a way that others just can’t. And we also have so many “typical” families that have come alongside our family and loved us through it all. They have made meals, sent cards and gifts, given hugs, and prayed with us. They have held us up during the tough times and celebrated with us during the good times. Both groups of people have become so important to us during this journey.

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