I am what my wife, family, and even co-workers would say is a very laid back person. I get excited for vacations, UK basketball games, and eating or cooking barbecue. I stress over very little and I only get mad at left lane drivers (looking at you Indiana) and windows computers (please just get a Mac, your excuses are becoming annoying).
Ever since Reese came into our world, my stress still hasn’t jumped as one would think, but my worries are different. For years I have made fun of helicopter parents. You know, the ones who follow their child from room to room and are always within arms reach. They constantly worry over every tear, every cry, and every runny nose. They strap them to leashes when they’re out in public and won’t let them play anywhere or with anything that could possibly get the child hurt.
I have become the helicopter parent. At least from the worry and medical sense. I try to ask everyone who visits Reese if they’ve washed their hands, I check on her constantly while she sleeps, and I pray no one I come in contact with is carrying some super bug that could hurt my precious girl. Reese is medically fragile with a capital F. Sure, she’s gotten healthier and stronger the last 6 months. It’s easy to see how well she’s progressed and think everything is going to be fine. Many people love to tell Elizabeth and I this. Sometimes I even start to believe it.
Yet it only takes one look at a facebook group we belong to of parents who have children with her genetic disorder, to understand things might not ever be normal. Their are heartbreaking stories of the epilepsy, the hospital visits, and the many therapies it takes for our children to develop. Just last Friday, I received an update on a 5 year old boy who has the same genetic disorder of Reese who passed away. Just reading his story had me crying at my desk.
Last night Reese started getting fussy and had lots of mucus in her nose and we used our suction machine to help keep her clear. Our big worry is it getting into her lungs and pneumonia returning. We have suctioned more mucus out of her in the last 12 hours than we have in months. She’s very fussy but has no fever, yet we can tell she doesn’t feel well. This is where we had to make a decision, do we go to our regular AMAZING pediatrician or take her to emergency room? With this much mucus, we decided a trip to the ER was needed to make sure everything was ok. We’ve been down this road before and waited for a fever to come and when it finally does, it jumps quickly and without warning.
So off to Kosair Children’s Hospital we went. As I drove her there, I was reminded of a commercial we see in our area for Kosair. It’s on constantly and it’s of an elderly man who went to Kosair often when he was a little boy and grew up to be a doctor. He ends the commercial with “I’ll bet I’m one of the oldest Kosair kids around.” I’ve seen that commercial a dozen times and every time I’m reminded, I have a Kosair kid too. I never thought my life would be that way. Spending weeks at a time in a children’s hospital was so foreign to me. I’m a control freak and I have always hated hospitals. These days I walk into an ER I’m no longer intimidated by the machines, nurses, and doctors. Today I walked in and within 10 minutes of triage the nurse said, “Well you sure know your daughter’s details.” As I write about it now, I’m amazed at how God has humbled me. He’s reminded me that it’s not about me and I’m capable of way more than I ever thought.
Thankfully, our ER visit was a short one. Reese has an upper respiratory infection along with an ear infection. She got another x-ray and some suction at the hospital. We’re now home with antibiotics and lots of rest. We pray it doesn’t get worse and this infection passes. We pray for healing and put our trust in God’s plan. May his glory always be revealed in everything we do.