Just a Routine Check Up

There are days in Gavin’s life that are tattooed on my soul. Moments where I am literally ripped inside out with just a few words.

The words have been spoken by physicians, therapists, nurses, clinical managers, other mothers and fathers, and even innocent children. Moments where I go numb. Moments where any strength or courage that I had when I got out of bed that day are long gone. Sometimes it takes a long time before I feel like a fraction of my strength finds its way back to me.

One of those moments happened on February 27th just before noon. We were at a routine check up appointment with Gavin’s spinal orthopedic. Gavin was x-ray’ed like normal. And he hated it like normal. The rest of the appointment was not like normal.

In fact, for months Gavin’s routine follow ups (with his 17 specialists) were filled with encouragement. “Keep doing exactly what you’re doing, because it’s working!” “He’s doing great!” “Wow, he’s so strong!” I had become so accustomed to hearing all the encouraging sentiments that I started to let my guard down. I started to think that, somehow, we had found the magic equation that was going to allow Gavin to overcome all of this adversity. Because, I’d be lying if I told you that I never dream of a day when Gavin wakes up without a single fight to fight. The positivity made it easier to think that maybe we were closer, just one inch closer, to that day. As a mother, I had let my emotions over take the daily act of balancing my heart with my brain. This appointment blind sided me. It was the very last thing I was expecting.

Gavin has been getting spinal x-rays since he was a few days old. And I’m pretty sure that if there was a gene for loathing x-rays, he was also born with that. He has something called skeletal dysplasia. Which is a super fancy way of saying that the bones of his body are abnormal in size and shape. Because of this, he has a severe curvature in his cervical spine between C2 and C7, which is why his neck looks shorter than normal. His curvature is known as a kyphosis, which means it goes front to back, rather than from left to right (scoliosis). This curvature was first measured around an 80-90 degree angle depending on which doc was interpreting. Gavin has been seeing two orthopedics from two separate health systems. This may seem like overkill, but when you are dealing with a unique situation, you welcome brilliant minds that are willing to find a solution together. As you can imagine, this curvature places a great deal of pressure in a very delicate and important area of the spinal cord. Both doctors agreed from the beginning that waiting and monitoring closely was the best course of action. Waiting meant giving Gavin’s tiny body the chance to grow stronger. Potentially, even partially growing out of the curvature.

On that February day, the doctor came in the room, looked me straight in the eye, and said, “I’ve got some bad news. The curvature has gotten worse. It’s now measuring at 129 degrees. I’m afraid that this new finding is forcing our hand to do surgery.” He continued to speak as I found myself going numb. His voice started trailing off.

As what seemed like a modern day TV medical drama started to unfold, I stared at the screen showing me the x-ray. How is this even possible? Why is this happening? Why? Wtf? This is so messed up. Doesn’t Gavin already deal with enough torture? Why more? Why? Why!

I was searching for what course of action was next. I was searching for the appropriate response. As I turned back around I said, “Ok, well, that’s all good, but what do we do.” He interrupted me.

“No, it’s not all good. It’s not good at all.”

He then started to explain our two options: spinal fusion surgery or no surgery. No surgery means that we watch Gavin slowly become paralyzed from the neck down. Surgery means that Gavin’s spine will be fused from C2 to T10. Which seems like a no brainer. However, his spine will remain the size that it is at the time of surgery for the rest of his life. Which means that when he is 20, from nearly the base of his skull to to the middle of his back will be the size it is right now. In most cases this leads to respiratory issues, as the growth of the rib cage is stunted by the fusion, which in turn will limit the development of the lungs.

I didn’t break down or lose my shit or scream at him. I just wanted to know what we were going to do between that moment in time and the surgery that he was speaking of. I couldn’t fathom standing by and doing nothing. Unfortunately, besides scheduling a sedated MRI to take a closer look at the spinal cord within that angle, there wasn’t much for us to do. It appeared at the time, that our worst nightmare had come true, and we had to sit back and watch it unfold.

So we packed up to go home.

On my way to the car, I called Greg to tell him the news. I am really horrible at telling people bad news. I hate doing it. The heart break that I was about to cause made me cry even harder as I tried to speak through my sobbing tears. I remember the red chair that I was sitting in and the window I was staring out. We pass that red chair every time we enter or exit the lobby for our appointments. It reminds me of the sting of that phone call every time I see it.

In an effort to spare me some pain, Greg made the rest of the phone calls to family and friends. Hearing his practiced lines was hard enough.

The next morning Greg initiated our 12 hour rule. We get to be and feel any emotion we want for 12 hours. In his words, we “wallow in self pity and why-me anger to get it out of our system’. And then, we pick ourselves up off the floor and fight like hell. I was hoping for more than 12 hours, but he was right. We needed to start to find the courage to do one thing that would positively impact the path that we were now on. So we did. One thing- scheduling the MRI. One thing- researching other surgeries like this one. One thing- finding second opinions. One thing- asking about options for bracing his spine. One thing- speaking to physical therapists about our options to strengthen him even more. One thing lead to many things very quickly.

A few weeks after this appointment, I was alone, driving along in my minivan with my music at a ridiculously loud level. A song by Tom Petty came on the radio that was meant for me to hear.

Well, I won’t back down
No, I won’t back down
You can stand me up at the gates of Hell
But I won’t back down
No, I’ll stand my ground
Won’t be turned around
And I’ll keep this world from draggin’ me down
Gonna stand my ground
And I won’t back down

I Won’t Back Down by Tom Petty

We’ve always known that if the curvature got worse, Gavin would need a surgical intervention to stabilize his spine. We were just not ready for it to be so soon. We had hoped for more development and growth. As of right now, Gavin is scheduled for surgery this fall. He will continue to be monitored very closely by a team of top notch docs. He continues to be an amazing kid, even as his condition deteriorates and his struggles progressively worsen. And his parents, well, we continue to find a fraction of his strength and courage, knowing that Gavin’s fight is much harder than our own.

But one thing is for sure. We didn’t back down when he was born and told he had days to live. We didn’t back down when we were told he would never walk. We didn’t back down when we were told his symptoms are entirely unique and his long-term prognosis is largely unknown. And we won’t back down.

#TRUTH: Don’t back down.