Standing At The Top Of The World. Then My Heart Fell.

Rose Godfrey   August 2, 2013   No Comments

Originally published Summer, 2013

I lift up my eyes to the hills–where does my help come from? My help comes from the LORD, the Maker of heaven and earth. Psalm 122: 1-2

Lassen Volcanic National Park, near Bumpass Hell

Lassen Volcanic National Park, near Bumpass Hell

This is exactly the view I had when my heart fell (Brian took a couple pics in the same spot that were a little brighter, but, even though I didn’t intentionally set out to get a dark picture, it sums up my emotions a little bit too). It might not be exactly the top of the world, but it felt like it to me. I am, you see, a wee bit afraid of being up high. I get dizzy on a ladder before I get half way up. When we cross the Bay Bridge, I make Brian drive in one of the middle lanes so I can’t see over the edge. I got nauseated at the Grand Canyon when my kids got close to the edge even though I was far away from the edge. You get the idea. This is about as close to the top of the world as I get.

This past 4th of July we camped near Lassen Volcanic National Park. One of the things we looked forward to was visiting the park for the hiking and so that the kids could earn their first Junior Ranger badges.

The problem, as I saw it, was that roads that take you to the top of a mountain are, by necessity, carved out along the side of the mountain. I squinched my eyes closed and wondered aloud (a few times, apparently) what these people had against guard rails. I tried reassuring myself that if people routinely fell off the side of the mountain, it likely would have made the news, but the little voice inside my head kept screaming that this was no guarantee we’d make it.

Sheer terror was interspersed with those moments where I caught a clear view of the scenery and marveled at the beauty that was laid out before us.

As we neared the parking lot that was at the Bumpass Hell trailhead, I checked my phone. I’d been checking it repeatedly for the past couple of days, waiting for some sort of result from Dominic’s cardiac testing he’d had the week before. At the top of the hill, I noticed I had voice mail.

We sent the kids out to climb rocks while I waded through the layers of staff who are there to keep me from talking to anyone at the doctor’s office. Finally, I got to the nurse who told me we need to go back to the cardiologist because some abnormalities were found. Nothing urgent, she said, but that was not as reassuring as she meant it to be.

It was the second time in Dominic’s life that I had known fear. The first time was when he was a couple of days old and he stopped breathing. Just flat out stopped. I realized that all that time complaining my way up the hill did not even compare to this.

I looked around for a guardrail, but there was none to be had. It was so hard to look ahead that I had trouble focusing on the beauty that was before me.

I held my boy for most of the rest of the day, either in the front pack or in my arms. Every time I looked at him, I saw The-Boy-Who-Has-A-Problem-With-His-Heart. And I prayed and tried to be rational.

Dom_5monA week later, we were at the pediatric cardiologist’s office again. It took 2 1/2 hours for us to get the tests redone and to talk to the doc. This was entirely Dominic’s fault. He was so delighted to be there that he kept pulling at the wires and connections and the poor techs had to redo everything about a million times. In the end, it was all fine. The doctor was thorough and covered all my questions. There is a teensy bit of fluid around Dominic’s heart, but no holes or other defects that are very common in kids with Down syndrome. No surgery. No pacing the waiting room waiting for a surgeon to come and give us results. Come back in a month, and we’ll do it all over again.

And suddenly, my world was right again.


About Rose Godfrey

Rose Godfrey is a speech pathologist and mom. Her son, Dominic, is the inspiration for the Trisomy 21 Club blog. Rose writes about homeschooling, travel, parenting, Down syndrome, and sourdough. Yes, it's an eclectic mix. She has written four books: Start Homeschooling Today: No Experience Required, Sourdough Simplicity, The Pig in the Pantry and Other Homeschool Tales, and Don’t Put Headphones on the Cat.

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