For ALS Awareness Month, we asked members of the Les Turner ALS Foundation’s Support Services Committee to help us explore topics in ALS that people should know more about.
For the first week of May, we’re looking at a day in the life of someone who’s living with ALS. In this essay, Melissa Diaz-Viera talks about her journey in motherhood with ALS.
My favorite video ever is of my daughter and me the day she took her first steps. We are in our kitchen. She is wearing just a diaper showing off her perfectly round belly and delicious leg rolls. Her eyes are bright and cheeks rosy and dimpled with a big smile. I stand on the other side of the kitchen, arms stretched out towards her encouraging her with claps. She giggles and begins her journey towards me. Each step is filled with increasing confidence. As she approaches me, I squat down all the way to the floor and meet her with a cheer. I swoop her up in the air and pop her up on my hip. We approach the camera and I exclaim, “Yay! Say, ‘I walked today! I’m walking!'”
At first glance you’d see my joy, excitement and pride. If you look closer, you may notice the redness and exhaustion in my eyes from several days of tears, panic attacks, and no food or sleep.
Just one week prior to this video, I also walked, squatted, stretched out my arms, and spoke. This time, it was for a neurological exam that would ultimately confirm a terminal diagnosis of ALS. The weeks that followed were disorienting and scary. Being with my baby was the only thing that felt normal. The video is adorable but, more importantly, it marks the beginning of an unexpected journey with my daughter. As she began to gain function and independence, I would slowly start to lose mine. The last two years our bodies have gone in opposite directions, but our connection has remained.
My muscle weakness began in my hands. Early in my diagnosis I was able to compensate for the weakness in my hands with little gadgets. I used adaptive nail clippers, jar openers, car seat unbucklers, and baby button hooks. I still took care of my baby while my husband was at work. I could still drive her to mommy and me classes. I could still make her meals and play on the floor and bathe her and soothe her to sleep.
ALS is ever-evolving and as my body has continued to deteriorate, my life has been marked by very specific losses. Many of those losses are directly related to my role as a mother. Every parent experiences these losses. We all have a last time when we pick our child up or do their hair or push them in a stroller. It is difficult to accept, though, that these endings came not from my daughter growing out of a need but, rather, out of my body’s inability to support the activity.
When my arms got weaker, I was no longer able to pick my daughter up from the floor. This meant I couldn’t get her into the highchair. I couldn’t lift her up to the diaper changer. I couldn’t lift her in and out of the bathtub. I also couldn’t get her into the car seat, which meant I couldn’t go anywhere with her alone. I could no longer be the first to comfort her if she was hurt. Eventually, I had to hire a nanny to help me with tasks that required strong arms. It was a big blow knowing I would no longer be able to take care of her alone.
If someone placed her in my arms, I could still carry her, rock her to sleep, and dance with her. At night, I would rock her to sleep in a rocking chair. Once asleep I would stand up and carry her to her crib. Slowly, standing up became harder. I would try to use the momentum of the chair to get up. One day my legs failed, and my knees came crashing to the floor while I still held my sleeping child. Defeat. I managed to get my phone while still holding her and call my husband to help us up. I knew then that bedtime would no longer be just the two of us.
Soon, thereafter, my legs continued to weaken. I was stripped of my ability to get up from the floor which meant less playtime. I could no longer make her laugh by dancing during diaper changes. It appeared that ALS was trying to create distance between us. As my daughter began to get taller and able to reach things on the counter, I began to lose my ability to stand on my tiptoes and reach things in the cupboards. As I began to need a cane to manage curbs, she explored her adventurous side and climbed everything in sight.
As time has passed, my physical distance from others, and the world, has grown. While the power wheelchair that I now use has become a place of safety, it has also become a place of isolation. I miss the days of cuddling on the couch. I lament the many ways that this world is not accessible. However, my daughter and I have found ways to stay connected.
At 3 years old, she is now an expert climber. When she wants comfort, she climbs onto my lap on the wheelchair and wraps my weak arms around her for a hug. We go on wheelchair rides around the house while listening to Frank Sinatra and Kendrick Lamar and the Lion King soundtrack. She snuggles on me as I sing to her before bed. Outside I put my 6-mph speed to the test as I race her and her blue scooter. After ballet class she shows me how to do an arabesque by lifting my limp leg up to the sky. We read books. We argue. We laugh. We say “I love you” a thousand times.
And just like in my favorite video, we are here to celebrate the big and small things together.
This Mother’s Day — and throughout ALS Awareness Month — we invite you to support moms like Melissa and others living with ALS. Your donation helps provide critical care, adaptive equipment, and a community of support that makes every day a little more possible.
Make a gift today in honor of the strength, love, and resilience of families facing ALS.
