The Mountains That Hold Me Up as I Parent a Medically Complex Child

I sat on this alpine lake beach eating huckleberry cobbler 341 days ago and whispered, “hold me up” to these mountains as storm clouds rolled in. I had been under a storm cloud of my own in recent days; 35 miles away, my son, Dax, was hospitalized with what appeared to be bone marrow failure.

Since Dax’s premature birth, he has faced developmental and health challenges with considerable patience and grace. He endures daily therapies and weekly doctor’s visits, pokes and all. We had settled into what we thought was a diagnosis of low platelets and global developmental delays when suddenly, a 24-hour nose bleed alerted us his blood levels plummeted to a critical level.

Our state’s only pediatric hematologist is in Kalispell, Montana, five hours from our home in Bozeman. We had been in her hospital for a week, working to determine why Dax’s blood counts were quickly dropping and pumping him with new blood to keep him stable.

As we waited for countless test results, our darkest fears crept into our hearts and our stomachs became deep pits of pain. My husband sent me out on a nature break; since I was in my hometown, I immediately went to this sacred place — Lake MacDonald in Glacier National Park.

As I finished my cobbler, I placed my head in my hands. Drops started to dot the rocks below me and I didn’t know if they were rain or tears. Terrifying thoughts swam through my head like the ripples in the lake, stirred up violently with the wind. Indeed, a storm was brewing.

Shortly after that first visit on August 2016, Dax was diagnosed with dyskertosis congenita, a rare disorder affecting various parts of the body depending on the patient. In Dax’s case, his cerebellum is underdeveloped causing physical and intellectual challenges, and his bone marrow doesn’t produce enough blood requiring him to undergo a transplant.

One year later, here I sit at the same beach, at the same big rock, eating huckleberry cobbler. My son is now 551 miles away in Seattle Children’s Hospital recovering from a bone marrow transplant; I’m on a quick trip to Montana for business and I sent myself out on a nature break.

 

All things considered, today Dax is doing well. We are doing well. And as I finish my cobbler, I think about the lessons we have learned over these long 341 days:

1. Being vulnerable has great benefits.

During the months after his diagnosis, those darkest fears became more real and those stomach pits deepened to what seemed like a point of no return. I really didn’t know if I was capable of feeling anything besides extraordinary sadness. Since Dax’s birth, we had been pretty private about his challenges, but for some reason, I now felt compelled to write and share our complicated and unique story. With every vulnerable share, we made room in our hearts for others. Out with the fear, in with the love. And what love it has been! Because we stepped out from behind the curtain, we experienced much deeper connections to those around us who have helped in immeasurable ways.

2. Being present.

Like really, truly present to all of the moments…good, bad and otherwise, because in a blink, that moment is gone and it’s never coming back. We know this in our minds, but sometimes we forget it in our hearts. We get so wrapped up in the logistics of life that we forget to live. Moments of pain feel like an eternity while those of joy seem temporary. I’ve had to learn that each moment, regardless of the associated emotion, is to be appreciated for what it is and protected from distractions of the future. Life is right here, right now.

3. Practicing patience.

I say “practice” here because it is a lot of work for me. Just as these park tourists, I just want to get to the good stuff. Right. Now. But the good stuff is worth waiting for, as any explorer knows. I read somewhere that “patience is not the ability to wait, but the ability to have a positive attitude while waiting.” With the help of a strong focus on being present, patience now means seeing the lessons around me and remembering that, as much as I want to be, I’m not really in charge here.

4. The extraordinary power of gratitude.

We are guaranteed nothing, and therefore we should appreciate everything from the vast kindness of lifelong friends to the unexpected generosity of strangers. When we pulled back the curtain to let others truly seen our pain, our friends rallied to support us emotionally, physically and even financially. Without that vulnerability I finally embraced, we would be in a very lonely place right now.

Last year on this alpine lake beach, as storm clouds rolled in, I held my head in my hands, uncertain of our future and my ability to cope. Today, I hold my head high with my face to the sun, still uncertain of our future but confident in my ability to cope. Those mountains have done a good job of holding me up, but this journey isn’t over. Far from it, in fact.

So, I send them one more plea: “Hold me up, giants. Hold all of us up.”

Follow this journey daxapalooza.blogspot.com.

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