How applying for enrichment opportunities benefits our family
Why asking for help is so important in life with Friedreich's ataxia
Unknowingly, I spent most of my life preparing to be the mother of a child with Friedreich’s ataxia (FA). Former life lessons show up again in the form of old friends, gentle reminders, or sometimes a smack on the head telling me I need to change my thinking.
When I was 21, I loaded up my few belongings, boarded a plane, and headed to Argentina for a year. A recall of my motivation at the time is clouded by memories of incredible relationships and life-altering experiences. My lack of linguistic gifts made my Spanish tongue slow and clumsy, the words often delivered with a big grin. I lacked understanding, knowledge, and skills. I often found myself looking to others for help, which was a challenge for my ego. Twenty years later, this continues to be a growth opportunity for me as I navigate life with FA.
I struggle with asking for help; I’m good at being “fine.” When our daughter Amelia started to lose gross motor skills at the age of 5, part of me downplayed what we were up against. When her FA diagnosis came at age 8, the truth stared me down from the pages of all the research. We were not fine.
As a social worker, I have over 20 years of experience providing others with options and referrals to help address their concerns. It’s a weird shift, going from connecting clients with what they need to becoming a client myself. But this is a pivot I must embrace, not just for Amelia but for her sister, my husband, and myself.
A challenge becomes a blessing
Last month, I signed our family up for a program called A Kid Again. I had known about it for many years in a professional capacity, so it took some ego quieting to apply for membership. The organization provides fun monthly events for families of children with life-threatening illnesses. The first outing on our calendar was a visit to Kings Island, an amusement park about an hour and a half from our home in Ohio.
It was a relief to have someone else cover the planning. We showed up, received clear instructions and the tickets we needed, and there were even volunteers present with sunscreen. It was normalizing to be around families with similar struggles. Amelia was not the only child in a wheelchair whose parents kept a close eye on heat, body temperature, and water. The bonus of having the expenses covered by people we don’t even know made us feel cared for. Battling a rare disease can be lonely, and I need to remember to allow others to care for us to help keep that feeling in check.
It was a hot day at the park. The vinyl seats of the bumper cars clung to sweaty skin, and the haunted ride was a relief with its lovely air conditioning. We attended a small party hosted by A Kid Again that involved ice cream, Charlie Brown characters, and a bubble machine. After several hours, our car transported a dirty, sweaty, and smiling family home. We talked about what each person enjoyed the most and giggled over some of the funny events of the day. There’s nothing sweeter to me than the sound of our girls’ laughter.
As I look at the upcoming calendar of events, it’s a nice change to plug in those exciting family activities to help counterbalance the medical appointments. Life needs to be lived fully.
Amelia drives a bumper car at Kings Island in Mason, Ohio, on July 16, 2023. (Photo by Elizabeth Hamilton)
Asking for help or signing up for assistance can be hard. It can also be a blessing. For now, I think the 21-year-old me would smile and say, “Aprendiste.” (“You learned.”)
Here’s to growth.
A big thank you to all the organizations that work to enrich the lives of others. A Kid Again has locations across the United States. To find a chapter near you, please visit the organization’s website.
Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.
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