Remembering My Grandfathers, Who Taught Me to Hold Myself Up

I was a lucky kid growing up, and I knew it.

Some might have felt bad for me because my parents were divorced, as were their parents. But all I saw was the abundance of love this afforded me. While many of my friends only had two sets of grandparents, I had four.

My four grandfathers were the pillars that held my life up. They were each vastly different and far from perfect, but they were mine. They loved me deeply, cried and laughed with me, and taught me everything from poker to how a horse eats an apple. One by one, they have left this world, each taking a piece of me with them while leaving bits of themselves behind.

Last week marked one year since my final pillar left me. My Papa Jack never had to be a grandfather to me. He was 44 when he married my grandmother in March 1988. I was born in March of the next year, 11 days before their first wedding anniversary.

He could have kept his distance and claimed he didn’t sign up for the job, but he jumped in headfirst and never looked back.

My Papa Jack taught me everything from how to change a doorknob to how to drive a golf cart, and later, his old 1983 Ford Ranger. He and my grandmother took on the task of being full-time babysitters to my daughter Addisen, now 13, when I was a 19-year-old single mom working and attending school full time to try to make a better life for us.

When Addisen’s dad and I got back together, Papa Jack never spoke a bad word about our pasts. He embraced us and told us to be the best we could be for Addi. When we got married, he stood in the courtroom and held me tight. He told me this was the first day of the rest of my life.

My grandfather cried when the Army sent us away to California, and then to Hawaii. He also cried the first time he held my 7-year-old son, Atlas, who shares the middle name of Lee with my husband and papa. 

My grandfather held me up through every moment of my life, good and bad. And he only got stronger when my daughter Austen, now 5, was born and started having seizures.

Our world turned upside down when Austen had her first seizure at 5 months old. Only a month later, my husband took a job out of town, traveling five of every six weeks. Every time we had to call 911, my grandparents shot across town to care for my older kids while I jumped in the ambulance with Austen.

When we received Austen’s diagnosis of Dravet syndrome and chose to move to Colorado, my grandfather insisted on loading up their car and following me there, just to make sure I traveled safely. He told me his whole world was in that car, and he needed to make sure it arrived in one piece.

Being 752 miles away from home didn’t stop his concern. He insisted I tell them about every seizure Austen had. He wanted to know the type, how long it lasted, and which, if any, rescue medications we used. 

We were in Texas when we got our first case of fenfluramine, now called Fintepla. It was delivered to my grandparents’ home, and they called me, excited for me to come and pick it up. Papa Jack was optimistic that the medication would help when nothing else had. I had my doubts, but he refused to be brought down. It turned out he was right.

This past year has been one of the hardest of my life. While it has been one of the best for Austen, I often have found myself in the throes of grief. My Papa Jack’s death was sudden for me, and I wasn’t prepared to lose him.

I feel like I handled the passing of my other three pillars a lot better than his. Maybe it was because I always had the grandfathers that were left to lean on. But suddenly, all four were gone, and the grief of being unable to call on any of them was hard to handle.

I am reminded of all of them every day. They are in Atlas’ temper and sudden desire to play golf. They’re in Addi’s love of books and history, and Austen’s love of music and strawberry milkshakes. My grandfathers are not here physically, but they are still with me in spirit. My children will grow up learning the same lessons from me that I learned from my grandfathers.

The four pillars, the foundations of my life, are no longer on this earth. But they still hold me up. Through the life lessons, each taught me how to hold myself up. And although they are no longer here to catch me when I fall, they taught me how to catch myself.

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Note: Dravet Syndrome 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 other 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 Dravet Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Dravet syndrome.

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