Her ALS Story Kids

When someone is diagnosed with ALS, it doesn’t just impact the individual, it has a ripple effect, reaching every corner of the person's life taking all who is in it, with it. At the center of it, oftentimes is our family, including the children. For children, the experience can be across the emotional spectrum–just like adults. In this blog post, we’ll let the children of our Her ALS Story mommas speak for themselves. 

Twenty-three of our group’s children, teenagers, and young adults responded to our survey, offering deeply personal, humorous, genuine, and thoughtful responses. As young as three and a half years old and as old as nineteen, many of them had similar responses. When asked about their favorite thing about their mom, many had a simple response. Siblings Clover, age 8, and Jai, age 5 share their favorite thing about their mom, Salym is “snuggling” and “givin’ her a smooch.” Riley, age 12, says that her mom’s smile is the best thing about her and similarly, McKenna, age 10, loves that her mom, Megan, makes her laugh. Member Evan’s daughter Mae, age 10, and son Ruben, age 8 share their favorite thing about her is how talented she is with painting and making things. Bria, age 6, sweetly shares that she loves playing with her mom, Brii. Harper, age 6, says her favorite thing about her mom is, “the way she loves everyone.” And Birdie, age 12, loves the perks that come from having a mom like the infamous Desi, writing, “We never have to wait in any lines and travel VIP.” 

Unfortunately, due to ALS, the typical roles in relationships can flip. An aging parent might be taking care of their adult child, or in this instance, a young child or teenager might be taking care of their parent. It is unfair and it is robbing both parents and children of the typical relationship. Our blog and social media posts often highlight members finding ways to be just a mom, but it goes unrecognized sometimes, the efforts and lengths the children of our members go to help their mom.Three-and-a-half-year-old Zaia loves “to help feed her momma.” She also enjoys wheelchair rides with her mom, Melissa. Lyla, 11 years old, loves to cook and having her mom, Salym, beside her walking her through it. Her little brother Jai says that he enjoys helping mom pick the weeds. Harper shares that she likes to help her mom get ready. She also loves coloring with her mom, while 11-year-old Ayden loves to go swimming with his mom, Atlleana. Bria says that she loves getting her mom’s wheelchair and helping her grandma get her mom in her chair. Twelve-year-old Kate secretly loves helping her mom, Megan, to bed because it means that she gets to stay up late. Her younger sister, eight-year-old Fiona, says she likes to turn her mom when she is in the wheelchair to dance together. As you can see, mixed in with the ALS life, there’s a glitter of normalcy and a dab of creative parenting and play only a child’s creative mind can come up with. There is also a great deal of sacrifice, and in the midst of it, the children here demonstrate that they can have a little bit of fun with the extra responsibility. 

But It is not always easy to have ALS in your life, and when asked what they wished the world to know about having a mom who has ALS, the group had a lot to say. Eli, age 11, wisely states,“I wish the world knew not to explain what she or the kid are going through to other people that aren't in the position that the kid or the mom are in. Also I think this goes for anyone experiencing anything similar even if it's not ALS or if it's not a mom going through it. You shouldn't just jump in and explain it for the person that is actually experiencing that.” Danica, age 9, says she wishes people knew how it feels to have to help so much and Maddie, age 6, similarly wishes others knew how hard it is. On the same note, Wyatt, age 8, shares that he wishes the world knew that “you really have to take care of her because she can’t do much on her own.” Mae vulnerably expresses she wishes others knew that when they talk about their mom, it makes her sad. Fifteen-year-old Abbie exclaims that while it is hard, she wants people to know that God helps her through it. Others like Birdie and Lola, who have moms who have had ALS for +10 years, wish others knew that their mom is just a normal mom. Elsa, age 8, argues that moms with wheelchairs can actually be fun because sometimes you can drive the wheelchair.Similarly, Ruben, also 8, says having a mom with ALS can be fun. He describes his mom, Evan, driving crazy on her scooter and how it makes him laugh. 

Elsa and Ruben make a great point, it can be fun. When asked about the ways their mom makes them laugh, we got the scoop. Fiona simply says her mom’s laugh makes her laugh, while her sister Olivia, age 10, shares a recent silly misinterpretation of her mom, Megan’s speech. She recalls, “She said she got us MOGIES, but I thought she said Buttcheeck!” Their older sister Kate tells us, “Dad was trying to give mom a drink while laying down, but he couldn't reach. I then came over and gave mom a drink and said, ‘Nice try Dad.’ Mom started laughing and I did too.” It sounds like these three are JUST like their mom. Clover and big sister Lyla are known among the members of Her ALS Story as the two who send us jokes, so naturally Clover and her siblings say that joke nights with their mom, Salym, is the best. Maddie giggles when her mom Sophie tickles her with her feet. Likewise, Elsa shared that recently her mom Annika went to massage her with her good hand, and tickled her instead. Bria says that her mom and her play a game from Chick-fil-A and her mom makes a silly face that makes her laugh. Nineteen-year-old Lola dishes on her mom Monique’s valiant effort to get a great holiday picture saying, “My mom wants to take Christmas pictures, and she bought a background for them off of Amazon. The background looks like a window with fake snow and the reviews with pictures show it’s all wrinkly. I was laughing so hard when she showed me.” Wyatt wasted no time to search for a moment that his mom made him laugh because it had happened just the day he responded to the survey. He explains, “A few minutes ago my mom made the table go flying and the chairs go flying because her hand got stuck driving her wheelchair forward.” I think that it goes without saying that ALS certainly keeps life interesting. But, it doesn’t stop life from happening. Mom’s are still moming, and kids are well, being kids. Abbie sweetly shares that her mom, Kaitlyn, recently made her laugh when she was crying. Mom’s are great like that. 

Speaking of vulnerability, it is no doubt that these kids have had their fair share of adversity living with ALS in their lives. It was gathered from the group’s responses, it’s not fair, it’s sometimes annoying to be thought of as brave for this, it’s sometimes not recognized enough, or it’s even difficult for them to really see any of their actions as brave. Which is all valid in so many ways. Lyla and Ruben argue, “Being a kid of someone with ALS automatically makes me brave.” No questions about that. Among many others, Danica and McKenna say their moms, Kelly and Kaitlyn, make them brave. Abbie finds bravery from her family and boyfriend’s support, and others like Jai find bravery in faith. Jai says that he “is brave because he loves Jesus.” And others find bravery outside of the ALS bubble like going to the dentist or other activities that are stressful or scary. Like Meadow, Jai’s twin, who states she’s brave because she eats her vegetables. Or Mae who writes, “I go on outdoor adventures and I am not afraid to get hurt.” 

When it came to talking about their mom’s bravery, everyone had something good to say. Little Zaia says her mom is brave at the doctors. And just like her, Meadow says her mom is brave because she too eats her vegetables. Danica and Harper say that their moms are brave because they never give up. Ayden exclaims his mom is brave because she does hard things like being a good mom to him and his sisters while also dealing with ALS. Riley asserts that her mom shows bravery by never being ashamed of being in a wheelchair or having to do things differently. Ruben says his mom, Evan, is brave because “she stands up to ALS.”  Lola writes eloquently, “Although the prognosis for ALS isn’t that good, she has never seemed afraid to me. I don’t know if she’s hiding it or if she’s truly just not worried about it, but she never seems like life is gonna beat her down if that makes sense.” It makes complete sense, Lola, our Her ALS Story mommas are brave. 

When it comes to being brave, we might think of our favorite superheroes. While the kids of our members dispelled the myth that all heroes wear capes, we still had to ask them if you and your mom were superheroes, what would your powers be? The responses did not disappoint. Eli thoughtfully describes, “Mine would be shapeshifting, my mom's would be either teleportation, teleconesis, or mindreading, and my stepdads would be being able to summon cats on his command, so like he could be the commander of an army of cats.” Lyla imagines a world where her “superpower would be running fast and my mom’s would be being able to appear places so she doesn't have to transfer or do long drives or planes.” Wyatt says that his superpower would be speed too and his mom’s would also be teleportation.  Maddie declares she would want the power to fix everything and her mom would have the power to love. 

When asked to describe their mom in one word, the challenge was deemed difficult. Eli said that he couldn’t use one word, there was too much he could say. Meadow described her mom as giving because she loves her heart. Her big sister Clover said her mom Salym is famous because she’s famous. The three sisters had a lot to say about their mom, Megan. The youngest, Fiona writes, “Kind because she is very sweet and only yells to get me on the school bus or to fix a mistake.” The middle sib Olivia says, “"Sqeeky-Woo!" Means Happy in the Axolotl language. I say this because she always has a smile on her face!” Oldest sister Kate, sweetly says, “Colorful. Because even though her body has been damaged, there is still the light of the world that shines within her.” Lola describes her mom, Monique as, “Resilient. My mom is the most resilient person I know. Being able to work for as long as she did, obtaining her doctorate this year, and the way she has remained positive throughout all the years that she has had ALS. I don’t know another word that could describe her after all that she's been able to accomplish and endure.” These are all certainly great descriptors of the moms of our group. 

The best responses were hands down to the question: if you could talk to ALS, what would you say? For those reading with young eyes, our participants did not use any filters and we won’t either. Zaia simply but strongly said if she could say something to ALS, it would be “Bye.” Three year olds are feral, if only Zaia actually got ahold of ALS. Lyla said, “Not cool dude.” Ayden asks ALS, “Why are you taking my mom from me?” Elsa and many others wanted ALS to know that it’s stupid. McKenna asks ALS to get away from her mom. Birdie and Lola say, “Efff you ALS!!”  Olivia writes, “SUCK BUNS!!! I HATE U FOREVER!!!” followed by ten to twelve angry emojis. But one person had a different message for ALS. Riley, probably a young empath growing her wings, says, “All you do is make people tougher, more confident, and cherish life even more.”