It Takes a Village to Live With Friedreich’s Ataxia

I admit I didn’t fully grasp the meaning of the African proverb “It takes a village to raise a child” until I became a mother. I bring it up because recently I saw a meme that said, “So, these villages that it takes to raise babies … do you get assigned one when you give birth or what?” That made me both laugh and think.

The village that supports me in raising my babies is strong, able, generous, and sincere. It formed relatively easily before my children were even born, and I truly depend on it every day.

My parents offer advice and support and have fun-loving relationships with their grandchildren. They are both willing and able to step in and help whenever and however they are needed.

When my kids, ages 3 and 6, are in a difficult phase of life, my friends who have kids of a similar age provide a sense of community that reminds me that I am not alone, and that this, too, shall pass.

Members of my church help equip me to be the best mom possible, and they help to build strong character in my kids.

My kids’ schools provide the education and social skills they will depend on and build upon throughout their lives.

Members of my extended family provide sanity and entertainment.

My kid-raising village really is extraordinary.

After my FA diagnosis in 2013, I desperately sought a village to help me with advice and to provide a sense of community. I wanted to learn everything I could about my disease. I wanted to know what to expect and understand why these things were happening to me. I wanted to talk to others battling this disease about the best way to fight it, and how to cope. I wanted a team of doctors to guide me through my symptom progression and to manage my expectations.

That is the village I wish I’d been assigned on Day One. Yet, it took a while to build. I had to try repeatedly to find the right fit.

As my symptoms progress, so do my village needs. I depend on different aspects of my FA village, whatever season of life my disease puts me in.

One vital pillar is my mobility aids. I never anticipated having such deep feelings of gratitude, respect, resentment, annoyance, and appreciation for an inanimate object, but my army of walkers prompts all of those feelings. I cling to my mobility aids from the moment I wake up in the morning until I go to bed at night. My walker has slowly, yet undeniably, become the most constant, needed, and dependable member of my FA village.

“Team Kendall” has formed and rallied around me in the most fantastic and supportive ways imaginable. I have dear friends and family who support me in ways I never thought I would need. Team Kendall has become a kind, optimistic, encouraging, compassionate, and strong cornerstone of my village.

Another important member of my village is my physical therapist. At physical therapy, I do a combination of strength training, coordination exercises, stretching, and endurance training. All of this helps my body keep fighting symptom progression, and allows me to feel accomplished. Even if a session has only a mild physical impact, at least it has important mental and emotional benefits.

The FA community also has become a dependable member of my village. It is so helpful to talk to, commiserate with, and find encouragement from people fighting the same relentless battle as I am. And together with the people in their respective villages, who are just as desperate as I am for a cure, we are making a difference. Our villages work together to promote awareness and to raise funds in support of lifesaving research all over the world.

As my roles of mom and FA patient have grown bigger, the various villages have started to blend and intertwine. My parents and friends form a majority of Team Kendall. My physical therapist has become one of my best friends. My community knows me by my walker and seeks out opportunities to help me. The friends I made at a Bible study group for moms have become my strongest support network for the emotional woes caused by FA.

I am dependent on my various villages. I am thankful for them and in awe of how they work together. Yes, they are time-consuming, but surrounding yourself with the right support system is vital, no matter what roles you have. It is worth the effort, because it truly does take a village to raise a child and go through life with a disability, especially if you seek a fulfilling life.

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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.