Infected with the latest bug and outnumbered three-to-one, I drove towards a labyrinth of city highways and traffic with the children. It was December 5th; a day that I had marked on the calendar for months as the day of Avery’s scoliosis check with notably the best pediatric orthopedic surgeon in town.

Another specialist appointment. Another hostage-like situation without negotiation, snacks or rescue while we wait for hours in a lobby to only be herded into a tiny box as we wait some more— weak, hungry, cranky and wholly at the mercy of the medical team’s schedule.

As we approached downtown, the fog and rain clouds lifted enough to reveal the skyline. My car’s navigation system spouting off every 3 minutes with more traffic alerts as we slowly crept the miles towards our destination.

Stop and start was the game, but I suppose not everyone was on board as I suddenly heard a loud “BAM!” from behind me. Almost immediately that sounds was followed by a “CRUNCH!” much closer to my ear.

My head and body jerked forward, and my mind was swirling with expletives that I somehow kept within.

In the middle of the city on one of the busiest highways, our car sat still. After a quick check to make sure my loves were okay, I looked back into my rear view mirror to see four vehicles piled up and a black KIA loaded to the gills on my bumper.

“Stay in the car no matter what and keep the doors locked,” I said to my tween as I left the safety of the car to meet strangers in a median while the once stopped traffic was now speeding by at 70 miles per hour in the next lane.

My own children safe and everyone well gave relief, but with drivers refusing to let me phone the police and soon pulling away from the scene of the accident tensions were rising.

“Kids, how do you feel about a detour to the nearest police station?”  I asked with irritation but insistence as I knew I would feel better after submitting an official report.  

It would hopefully only be a short detour on our way to the med center. Any mom knows to pad the drive time to a doctor’s visit but no one really expects to need the extra minutes of travel time to make up for a car accident and an impromptu trip to the nearest police station!

With as much excitement as I could muster, I tried to rile up the kids about visiting a “cool police station” in the rain, but really? We all rather have been anywhere else.

Wheelchair and umbrella along with three children I walked into the station to fill out an accident report— which too my welcomed surprise was quick and easy.

Back on the road again, this time without a car accident, we rushed to join the waiting game ten stories high. Sick, exhausted and annoyed from our delay we did all we could do and nestled into our lobby lounge chairs as we waited to hear the only name called that we wanted to hear.

And wait. And wait we did.

Avery made countless friends. Zev played much too much on the iPad. Audry, home sick from school, caught up on missed work. I rested in between coughing fits and nursing my four-hour old Starbucks coffee.

As the sun began to set on a rather long day, it was finally Avery’s turn to see the doctor (or to at least be ushered in to an exam room for the next phase of the wait). As we waited, she continued to lift our spirits with her infectious personality and mischievousness (and eat some paper from the exam table, because this is still Avery, after all).

The x-ray was her favorite part and because she loved it so much, it was also THE highlight to my day. “Up, up and away”, I’m sure she thought as she sat with excitement and anticipation as if she were loading onto a ride at Disney World.

Armed with the tools the doctors needed to evaluate the next chapter in Avery’s health and life, we were escorted back into the exam room.

Eventually, the rock star doctors graced us with their presence, knowledge and prognosis.

Unfortunately, the scans didn’t look good— one might say they even looked quite bad. Anyone could see without a medical degree that her curve had increased to 100% and was encroaching on her lungs and heart. Not a candidate for surgery, our only step is to wait and see the next scan in nine months and to visit a pulmonologist as soon as possible.

Scoliosis isn’t an uncommon diagnosis with Avery’s rare chromosome disorder and she has lived with it for quite some time. What is surprising, however, is how well she is physically hiding a curve as significant as hers and that she remains able to sit upright and maintain a great balance. While often operable, Avery’s physical condition from her chromosome disorder leaves her in a holding pattern until she is large enough to benefit from the very invasive, extensive and often just one of many surgeries to attempt to slow or fix a condition of scoliosis as bad as hers.

I can’t say that December 5th, 2016 was a great day for us. It is understandably difficult to receive the news of a significant status change of health, and no person/parent ever of any child (special needs or not) loves specialist visits, wants to go to any appointment with all of the children, wants to do so unwell or wants to do so in the rain with a car accident and an impromptu detour to the police station. I think this is why I must start carrying candy in my purse for these emergencies. While our life is often a box of chocolates, I also would like to eat chocolate during these life moments.

As many challenging days as we have had over the years, we always add in our own little fun and adventure— often spurred on by Avery herself. When I look back years from now to remember this day, it won’t be the car accident, the news, the sickness or the wait that I will remember. It will likely only be the memory of the pure elation and innocent excitement that illuminated from Avery as she rode the ‘x-ray ride’.

It is the only memory that is truly worth holding near.

Pick your memories and your focus carefully. Your outlook holds the key to today and to tomorrow.