Finding Gratitude at the end of the Dirt Road

Today I took a walk by myself. No friends. No dog. No music or podcast in my ears.

I recently read several articles about “mindfulness” and decided I needed to give it a try. I listened to my feet on the dirt road, and how I inadvertently kicked small pebbles as they interfered with my gait. My steps sounded crunchy, but softer and quieter on the wet parts of the dirt road. I listened to the wind through the aspen leaves and the humming birds buzzing around out of sight. As I tried to identify a bird in the middle of the road, I realized my vision was blurry. I had been overcome with emotion and was crying. Sobbing.

I continued on my path, trying to figure out *which* emotions took over. To my left was a driveway to a home. Two dogs flanked either side of the driveway, 20 feet from the road. They were barking – on full alert of my possible intrusion on their territory. As I walked by they mirrored my movement along the road, not approaching me, just guarding their space, as if guarding a line in the sand. Without music or friends to distract me, I quickly identified with the dogs. Where is my line in the sand? What do I guard? The outside world can do as it pleases, but when it comes to my kids, that’s my line. That’s when I start barking. I bark a lot on Cooper’s behalf: legislative advocacy, special accommodations at school, scheduling and attending what seems like a million doctors appointments, raising awareness about MPS. I feel like most people know me as “Cooper’s Mom”. Which is good, and I’ve worked for that and I own it. But what about my sweet firstborn? Campbell recently started on a new soccer team, and Cooper and I have hung out during a few practices. There I am “Campbell’s Mom”. And no one knows all the “Cooper stuff”. They only see Cooper’s neck brace, and don’t ask many questions. I feel like I’m living a second life there on the sidelines, as a “normal mom”. Are my emotions overwhelming guilt that I don’t give the same amount of effort to Campbell’s life?

I saw a glint of blue flash by in the sky, and found the bird I had noticed before. Sitting in the dirt road – although blurry – the bird was grey. But in flight, the feathers were the most spectacular blue! It perched in the shade on an Aspen branch and it’s dull grey color almost made me loose sight of it. But when it took off into the air I saw the brilliant blue again and was amazed at the juxtaposition of the two appearances of the bird. My mind wandered and this time identified with the bird. Driving in my car, going to the grocery store, and standing in line at the post office are where I wear my grey feathers. Advocating for Cooper seems to be where my blue feathers flash.

Next the dirt road started up the hill and turned the corner. I felt my heart rate quicken and sweat dripping down my face. As I wiped my face with my t-shirt, I realized how grateful I am for this exercise, my legs that work, my feet that can take me to this beautiful place. I rapidly started zooming out, feeling the big picture. I am grateful for this trip to the mountains – something that we didn’t think we could do this summer, since Cooper was supposed to be in a full body cast. I am grateful for Brian (my husband), and the team we are when it comes to family decisions. I am grateful for Campbell, her fast legs, her big heart and even bigger hugs. I am grateful for our support system of friends and family. I am beyond words grateful for their generosity. I am grateful for the generosity of strangers, who reach out to help my little boy and our family.

So those emotions that came out when everything else was quiet? Gratitude.

This evening, the visiting priest at mass talked about how you can make the world a better place by having gratitude. As I see it, there are no coincidences. It was time for me to acknowledge all the love that’s been showered on us since my last blog post about Cooper’s surgeries, and how it was Our Turn to ask for help.

If you follow Cooper’s Caring Bridge site, you already know that Cooper’s hips, knees and ankles are free to do as they please this summer. Cooper’s pre-surgery MRI showed that his spinal cord was being compressed at the base of his neck, so instead of surgeries on his hips, knees and ankles, Cooper had spinal decompression surgery and is in a neck brace for three months. (Oh, don’t worry! We’ll go back for the hips, knees and ankles next summer instead.) Brian and I handled the surgery change with calm confidence. We are thankful for our MPS family and the medical knowledge we’ve gained during the five years of our involvement with the MPS Society. We are thankful Coop and I got there in time for the MRI after cancelled flights, bad weather and NEW last minute tickets on a different airline. We are thankful the MRI showed the cord compression and Dr. Mackenzie and Dr. Campbell could operate ASAP. We are grateful that we have the opportunity for the best care for Cooper. We are grateful to have this summer with family fun time that doesn’t include a full body cast and only wheelchair accessible areas.

So walking up the dirt road to our driveway today, I know my emotions were those of gratitude – for the things I’ve stated, and for more that I haven’t stated. I pray that I’ll always feel AND express my gratitude as our journey continues.

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