A Father’s Celebration

As Father’s Day approaches this year I find myself confronting an oxymoron of epic proportions: three decades of fatherhood seem to flash by in moments that will last forever.

It actually reminds me of one my favorite quotes from the philosopher Kierkegaard: “Life can only be understood backwards; but it must be lived forwards.” It really speaks to the power of looking back at your life at certain events and moments and understanding them better in hindsight.

In reflecting on my life as a father who lives with limb girdle muscular dystrophy, I’ve come to realize that those of us with disabilities do a lot of thinking and planning. How will we get there? Can I do it? Will it work? All of us must plan, but people living with neuromuscular diseases that can take away the everyday freedoms to walk, dance or hug our loved ones must be expert planners. We spend a lot of time understanding our capabilities and limits so we can find a way to get things done.

But fatherhood has taught me not to be afraid to try new things. We have become so good at knowing ourselves and planning, but we may find even greater success and achievement ahead when we let go a little.

Letting go certainly has been a theme this year. I have three children, a 32-year-old son, Ralph, living in Wisconsin and identical twin girls Francesca and Marcella, living in Chicago and Los Angeles, respectively. I consider myself very fortunate because my children were all in their 20s before I even started having symptoms and noticeable muscle loss associated with my LGMD2L onset. Up until that time, I worked close to home — I even came home for lunch often — and was able to catch almost every game of basketball, baseball, softball, volleyball and whatever else was on the agenda in school.Now, with my kids grown and my LGMD affecting me more and more, at age 58 I spend most of my time doing a small amount of clinical counseling while also working on a variety of issues affecting those of us with disabilities.

But it is my role as father that I cherish above all, and this year I achieved a special dad milestone: I walked my daughter down the aisle at her wedding on April 22. That walk was a bit of a worry for me, I’ll admit. Marcella and Brandon were engaged for 18 months, and that long lead-up had me thinking a lot about where I might be in terms of my leg strength on the big day. I worried, too, I wouldn’t be able to dance with my daughter.LGMD

The wedding was perfect. I was able to walk Marcella down the entire aisle with the help of my cane – but, looking back, I probably could have gotten by without it if not for the strong fear of falling. I smile now to think of how often I worried about being on the floor halfway down the aisle. And as for our dance, it, too, was perfect. We did a minute by ourselves and then had the crowd join in.

At Marcella and Brandon’s wedding, I made a small speech before my toast. I spoke about how, when my babies were maybe 10 years old, I read them Hemingway’s The Old Man and the Sea, a few pages at a time each night. It was an emotional book, especially at the end, as Santiago, the old Cuban fisherman, tries to make the impossible walk back up the beach in his weakened and exhausted physical condition.

Ten years after I read that book to my girls, Marcella had a line from the book tattooed on her back: “Everything about him was old except his eyes and they were the same color as the sea and were cheerful and undefeated.”

The line, to me, speaks to so much of the love and passion we can all find in life no matter our circumstances. It also has special resonance now as I reflect on the joy of fatherhood. The final three words, “cheerful and undefeated,” speak directly to me, and to all of us living with a neuromuscular disease. We will stay strong!

Ralph Yaniz is a former regional vice president for AARP and is currently a licensed clinical counselor. He worked his entire career in the nonprofit arena in mental health and aging, and he led major advocacy efforts in Illinois. Ralph also helped start a cancer foundation in Florida that provides bilingual assistance in English and Spanish. He is a member of MDA’s National Community Advisory Committee.

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