It was the sideways glance and raised eyebrow from the pre op nurse that got me thinking. I can’t really blame her for not understanding because prior to life with medically complex kiddos, I wouldn’t have understood either. That they have medical, spiritual and emotional needs and each are just as important to maintaining some kind of balance in this crazy life of genetic disorders.
So, as they wheeled our oldest son out the door into surgery and I was sitting with our daughter in the same pre op room getting ready for her surgery, I explained to the nurse why I brought my thirteen year old son to see his first concert the night before.
I told her Imagine Dragons is his favorite band and his amazing aunt got the tickets for him for his birthday. I explained that he was very concerned that he not miss the last of soccer season, or the beginning of basketball season so this gave us a very small window in which to schedule the eye surgery. (Because, well, thirteen year old boy priorities.) I tell her that this rare disorder of theirs, Cerebrotendinous Xanthomatosis, comes not only with juvenile bilateral cataracts, but with a lot of anxiety. So, I scheduled the surgery on the only date available in between sports and brought him to the concert the night before. He had a great time and, although tired that morning, he was much less stressed about the surgery.
As the blood pressure cuff inflated and the heart monitor beeped I colored with our daughter and explained that for her, Dad spent the night playing Minecraft to distract her. The decisions aren’t always easy ones to make. Trying to balance all of their needs is hard. They are more than just flesh and blood. In the midst of endless lab work, exams, specialists and testing it has become more and more important that we make all of their needs a priority. Sometimes this means ice cream before dinner rewards for copious amounts of blood work. Sometimes it means skipping homework for prayer, not following that strict diet perfectly so that they can eat what the other kids at the party are eating or taking the injury risk for that activity that they love.
We have two medically complex kiddos and this means we have complex lives with complex decisions. And we’re just doing the best we can to meet ALL of the needs.
And you know what? Much later that day, our son was out of surgery, out of PACU and sitting somewhat patiently with us while we were waiting for our daughter to crack open her precious little eyes and the PACU nurse comments on how easy going and patient our kids are. After 12 hours in the hospital neither one were complaining and both were good naturedly trading jokes with us and the staff.
So, we will keep fighting for balance. We know our kids and their condition better than anyone else we come across, no matter their degree. Tonight, one day post op, they’re going to youth group. Because they want to, and it’s just as important as the medication they’re due for in an hour.
I’m not saying we make all the right choices. I’m definitely not saying we’ve got this thing figured out. Actually, we really screw it up sometimes. But, what I’m saying is, I’ve learned that our kids’ needs are complex and go far beyond the physical. I’ve learned that not everyone is going to understand that. I’ve learned that sometimes I will get a sideways glance and raised eyebrow at my decisions. And I’ve learned that that is totally okay. Sometimes I’m right.























screaming that something was wrong. We did not go to a store and buy toys. In fact, I don’t remember even knowing this area, in the bowels of the store, even existed. And not only was my very quiet mother showing us the treasures back here, but she was telling us we could each pick out one thing. My sister immediately latched onto a My Little Pony play set. I already knew I didn’t want anything of what was going on. Whatever it was. But, Mom insisted. So, I gave in to the lure of the Cabbage Patch stuffed horse. I was relatively certain a stuffed animal would prove more useful than a My Little Pony carry along play set for what was coming and I tried to convince my little sister to do the same with no luck. My stomach dropped a little further as Mom pulled the necessary money, which she couldn’t spare, out of her black fringed leather purse.
stuffed horse, I was trying to figure out the plane inside the terminal, while I caught bits and pieces of the conversation at the ticket counter. Mom grabbed our tickets and we headed to the gate. In my child’s brain, I can hear the echo of her high heels to what seems the ticking of the second hand on that large clock.
As we approached it, this is when my little sister started to catch on and start to cry. A sympathetic stewardess with bright red lip stick met us. “Unaccompanied minors”. She’d be responsible for seeing us safely from one parent to the other half across the country. A half hour later, in our seats across from the airplane’s galley so they could keep an eye on us, my sister was still hiccupping and trying to catch her breath. I’d given her my stuffed horse and the stewardesses had done their best to distract us. Including telling us they had a couple of extra first class breakfasts they’d get to us as soon as we took off, and would we like to meet the pilot and see the front of the plane? And look here, we’ve even got some pins just like pilots wear! Throughout the flight they gave us the promised breakfast, blankets, pillows, and headphones that plugged into the armrest. Then, took turns trying to entertain the two scared, heart broken, confused little girls holding hands.