I am running a marathon — a really long, hard marathon which requires every skill I have — and some I have not — and strength beyond what I thought I could muster.
It’s not the New York City marathon or an Iron Man competition. It is the marathon of life that we all live, with its ups and downs, twists and turns. And for some, like me, this marathon includes the added challenges of life as a caregiver.
Recently, I was at the beach watching the sunset with my daughter and a friend. The laughter and a glass of wine was a welcome diversion from the stress of doctor and rehab appointments, and managing daily tasks of caregiving.
A few feet away from us, another group of people — likely a little older than me and my friend — also sat with their food and drink enjoying each other’s conversation in the light of the setting sun. At one point, their conversation turned to caring for elderly parents.
One member of the group expressed deep frustration and disdain for the task of caring for one’s parents and described it as one of the worst experiences of her life.
While I respect and understand her opinion, it was quite foreign to me and my experience of parenting and caregiving for a child/young adult with special needs. Even for the brief time my mother required more assistance, I would describe it as one of the most cherished times in our 52-year relationship.
As I overheard these conversations, I looked at my daughter’s smiling face and the sunset reflecting in her deep blue eyes. Jo hasn’t yet bounced back from the most recent brain hemorrhages, surgeries, and infections that has plagued her since before summer began. Her baseline has shifted and we are doing our best to adjust to the new normal. She looks like a warrior who has gone through a battle — with many scars on her head and body to prove it.
Yet, she laughs at the cutest things and her laughter feeds me. It doesn’t take much to make Jo laugh — and when she does her whole body shakes and the asymmetry in her face and limbs is enveloped in pure joy.
That evening we were grateful to be watching the sunset over the Long Island Sound rather than from a hospital room in Manhattan. There is no place like home.
When we started this journey 23 years ago, I knew we were in for the long game — a marathon, not a sprint — to the finish. I knew it would take endurance to continue on this path.
Building endurance requires patience and perseverance. When it comes to caregiving, it often feels like we are swimming upstream — or rushing to catch up with the rest of life passing us by.
When I feel that way, I’ve learned to be patient with myself and others. I remind myself that our lives function at a slower pace — often adjusting for taking two steps forward and three steps back.
Johanna loves the thrill of a walk/run competition. She’s a very social person and she likes all the excitement that surrounds a race. Before I broke my knee, I ran while pushing Jo in the wheelchair/stroller for the local 5K race. It was exhausting and exhilarating. After the break, I went back to walking.
While caring for Jo in the hospital, I walked around Manhattan. When we returned home, I barely had time or energy to walk. As the 5k walk/run approached, I asked Johanna if she wanted to do it this year. Her quick affirmative answer took me by surprise. So, I signed us both up. Jo rides in the stroller and I push her as I walk.
When we arrived at the race, I was anxious about checking and setting up Jo in the stroller with her service dog beside her. There is a competitive feeling in the air and it’s hard not to get caught up in it. As is usually the case, we were running late with little time to spare for check-in before the start of the race.
In the midst of this feeling of panic, I had a moment of clarity and sanity. We were there for different reasons than many of the runners. We weren’t competing against others or even against ourselves for a better race time. We were in it to de-stress and for exercise and fun.
And like everything else in our lives, we had to find an accessible spot to accommodate the stroller and keep our focus on walking at our own pace so we could get to the end.
This race, as in life, was about patience and endurance — not speed. We took our place in the back of the runners and set our sights on following signs to the finish line.
As we walked, we prayed for other people in need and we chatted. Johanna waved to people cheering us along the route. Jo is a very social person and even when she’s struggling and in pain, she somehow always manages a smile.
As runners passed us by, we stayed our course. I stopped so Jo could take a picture of the beautiful Peconic Bay and so we could give Jo’s dog some water along the route. Sometimes I felt that familiar feeling of not moving fast enough as runners passed. It was a mental exercise as well as physical just to stay focused on the goal to enjoy the walk and make it to the finish line.
As we came to the end of the walk, I asked Jo if she wanted me to continue pushing her across the finish line or if she wanted to walk. Jo surprised me again and told me quite emphatically that she wanted to walk. We ditched the stroller in the parking lot and then started the final stretch walking to the finish line.
Johanna can’t really walk on her own unassisted. She uses a walker or the hands of others — even to navigate in our own home. But on this day- only four weeks post-op from brain surgery — after spending much of the summer in the hospital, Jo walked across that finish line holding only my hands for support.
As I helped Jo towards the finish line, this scripture played out in my head:
We forget what is behind and strain towards what is ahead. And so we press on to reach the end of the race and receive the heavenly prize for which God is calling us. (Philippians 3:13-14)
As we walked, nothing else mattered but crossing the finish line without falling over. Jo led the way with her determination — witnessing to me the power of prayer, and endurance which is born of struggle.
We are all running in this race of life. Though some may act like it’s a sprint to the finish line, it’s really a marathon that requires patience, endurance, hope and a little prayer. Keep your eyes on the finish line. You’ll get there in good time.
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