







Peggy and Rainer.
Mom loved to snow ski. Being outside all day on the beautiful mountainside and the exercise made her love it so. Her short, thin, athletic body effortlessly glided down the mountains. She was known most of her life as a “die-hard skier” as she wouldn’t come inside until the slopes closed, no matter the weather condition. She took many ski lessons over the years, but the instructors told her the same thing over and over: lean forward! She would laugh and say it was a little scary to lean down the mountain; she might pick up too much speed.
She had been living with her diagnosis of ALS for about six months the winter of 2012 and needed the constant support of a brace on her right ankle to keep her balance. However, she wanted to try skiing on our annual family weekend trip to the Virginian mountains. She had strategically not asked the doctors’ permission, figuring she’d tell them about it later. Mom shared in an email to a friend before the trip: “I want to try skiing, maybe on the beginner slopes. Can you think of a better brace for a weak ankle than a good ski boot? If it doesn’t work, there are plenty of other things to do, like water aerobics, yoga, weights and golf as well as reading and drinking wine.” I loved her enthusiasm even if I was a little unsure if she could ski safely. I also was resigned that regardless of what I thought, she was going to give it her best shot.
My mom, dad, and brother arrived on that Friday evening from one direction and my husband and three young children arrived from another a bit later full of excitement. We ate dinner together and the hope of the next morning’s ski attempt continued to mount.
That Saturday morning was beautiful. The sun rose over the mountains with exquisite pink, purple, and orange streaks. The frigid air filled our deep insides with familiar memories of many past ski mornings together as Mom, my brother and I took some slow deep breaths and bent to buckle our boots. I helped Mom into her skis as she balanced holding her ski poles tightly. Dad silently observed from the dry path near the slopes, his deep expression held emotions of hope and worry. Mom turned to him and waved, a full ski pole wave and a big smile on her face. His face brightened and he returned her grin and let out a “You can do it, honey!” yell.
“I think I’m ready,” she announced. She slid forward on her skis; her petite body eased into the mountain’s slope to find her new balance point. She leaned slightly side to side to test her ability to stay upright as the ski slope started it’s slow downward descent. She always liked to snake back and forth making huge “s” tracks down the slope; her theory was that it was better to go slowly and get more mileage each run. She did this very thing today, but I knew she was taking in the adventure with a new significance knowing her body was changing in a way that was betraying. She inched downward and I witnessed her body finding that old familiar slightly bent-kneed posture. Mom leaned forward into that big stable ski boot and skied!
We went up and down the bunny slopes all that day. This winter was also the first time my son attempted snow skiing. We signed him up for ski school and he lucked into a solo lesson the whole day. By the afternoon, the kind instructor was taking him up and down the same slopes we were skiing. I caught sight of his dark green jacket with his bright blue helmet and excitedly pointed him out to Mom and my brother. We were skiing only a little faster than they were, but slowly navigated our way over to them. My son’s face burst into a huge grin and he said, “Look!! I’m skiing!!!” as he demonstrated his newly found balance and speed on his skis. We skied together for several runs.
Mom was completely exhausted from this huge effort to balance herself on those skis and enjoy the day. I remember her sleeping long hours for several days following. Mom later said, “It has always been a dream of mine to ski with my grandchildren.” She smiled and her expression revealed it had been worth every effort to do something she loved with her grandchild and children.
This was the last time we skied with Mom. The devastating disease of ALS continued to rack her previously strong body. Watching Mom enjoy her day of skiing permeated in me that enjoying today is important. Time is sacred. She chose to live leaning forward into the things she loved, the small things like a cup of coffee or a glass of wine and then certainly the bigger things like making it down a mountain on her skis. These things often meant sacrifices for her such as her energy. It also meant sacrifices for her caregivers, especially as her body needed more and more assistance. But somehow, she created moments full of deep meaning. She obviously treasured and enjoyed them tremendously as she balanced losing pieces of her body’s function with sadness. We learned to trust her lead. The everyday became sacred.
Where can you notice or really “see” your loved one as they journey on the hard, unflattering road God has called them to? How can you say, “I see you and I see your bravery?”
(Jennifer is wife to Anthony, and mother to 3 lovely children, trained as a social worker and rediscovering her love for writing. Her amazing mother, Peggy, was diagnosed with ALS in the fall of 2011 and passed away just 2 years later. So, as you can imagine, the changing of the seasons from summer to autumn is an especially reflective and poignant time for Jennifer. Like her mother, Jennifer loves to be physically active outside, hiking, running and exploring. She is passionate about helping her family and community live more healthfully, simply and wholeheartedly.)