Carianne Meystrik has been living with ALS for 22 years – all while raising 4 children. In honor of Mother’s Day, we reached out to Carianne to check in on her ALS journey and her family, and to get her reflections on the impact ALS has had on motherhood. 

ALS Awareness Month just kicked off and you just celebrated your 50th birthday just a few months ago – Happy belated birthday! Could you reflect on the impact that ALS has had on your life?

I never imagined when I was diagnosed at the age of 28 that I would ever get to celebrate my 50th birthday! ALS has taken away so many things like my independence and the ability to enjoy many activities such as hiking, biking, working out, wrestling and playing with my kids and husband and hugging and touching my family and friends. I have to choose joy and contentment in a much more passive lifestyle. I LOVE watching my kids play sports, love to play games, and love sitting by a rushing creek or river relishing in God’s beauty around me. With ALS, I have to accept and adapt to changes and appreciate and enjoy the many blessings I have. Technology allows me to keep up with my children and to take an active role advocating for and participating in the ALS community.

We are currently reaching out in the midst of a pandemic- how has COVID-19 affected your day-to-day life? 

COVID-19 has instilled a bit of fear for this invisible enemy. It has put a hold on entertaining friends and family in our home and on enjoying our local breweries. It has been inconvenient for me not getting my daily to-do list done around the house as my caregivers have been furloughed and my husband works from home. BUT these are very minor issues. I am so grateful he can work from home, and the best part is two of our four kids have been quarantined with us as they do their college classes online. What a treat to be together!

What would you say the biggest challenge was raising your kids while living with ALS? 

The hardest part of raising kids while living with ALS is not being able to hold them and wipe their tears when they are hurting and to do the everyday things that Moms do for their kids. All the little things. Roles and duties were sometimes reversed when they were little. They were the ones tying my shoes, feeding me, and helping me in the bathroom.

What traditions do you have for the day? Have they changed through your journey with ALS? 

Some years my kids and husband help me get and plant flowers. Some years, especially if the weather is bad, we have a game day. My favorite thing is to go to Cades Cove in the Smoky Mountains and sit by the creek all day. The kids hang their Enos, we play games at the picnic table, and we grill out. It’s a PERFECT day. This year COVID-19 has the National Parks closed and my oldest daughter and son-in-law won’t be with me as they have moved to El Paso for the Army. What a privilege it has been to raise four amazing kids to adulthood! I know I will likely not have them all together for Mother’s Day in the future, but Motherhood has been the sweetest journey thus far.

Has ALS changed how you celebrate Mother’s Day?

 ALS has changed how I am able to honor and celebrate my own sweet Mom. I can’t do all the things I would like to spoil her and show her how much I love her, so I have to rely on words.

The ALS Association wishes everyone in our ALS community a very Happy Mother’s Day.