Musing Momma: A Story About Love...and ALS

I originally shared this post last year. It is written in loving memory of my stepfather, "Bumpa," who passed away two years ago today. Zip and I still talk a lot about Bumpa and the special memories they made together. Zip is certain that his Bumpa is watching over him.

Bumpa & Zip in 2008

Today, I’d like to share a love story. It’s the story of a man and a woman, but also the story of a family. It’s a story of joy, but one that ends before it should. The story of a man full of life, the story of a man weak and confused. Because it is a story about not only love, but about ALS.

My parents divorced when I was in high school. While my dad quickly moved on to his next relationship, my mom was slower to heal. She dated off and one throughout my high school and college years and had a couple of long-term relationships, but in the end they didn’t last. Then my mom met the Bumpa. I clearly remember the first time I met Bumpa and how welcome he made me feel, in the most very genuine way. (If you were raised by a single parent, you might recognize how exceptional this is.) He took my mom and I to dinner, bought us beers and hamburgers, asked me about grad school, and made me laugh. He didn't see my siblings and me as people he had to occasionally associate with because he was dating our mother. Bumpa was a people-person, a family-guy, and his lady's kids were people he wanted to get to know.

Playing horsey in 2009

As they dated over the next few years, two families came together. It was a little bit like the Brady Brunch – a man and a woman, each with three kids of their own. That made six of us, plus significant others and eventually four grandkids. We were all adults by the time our parents started dating, but our families immediately “clicked.” Holidays meant beer and games of pool, skiing and snowshoeing, bonfires, concerts in the park, and uber-competitive games of Scrabble.

This guy was the one for my mom, her match. They truly brought out the best in each other. They went rollerblading and biking. They people-watched and went to church together. Family and friends were important to both of them. If my mom drove 10 hours to visit, Bumpa came along for the ride, even if it was two days after shoulder surgery. He was the kind of guy who loved a party, who dyed his beard green and drove his "tractor" in a parade on St. Patrick’s Day, and who always knew what was happening in town, be it a parade or a concert or a festival of some sort. Seriously, if I could have picked anyone for my mom, this was the guy. His love for life and family was as big as hers.

Just by coincidence, they got engaged the day after Hubby and I did, and they got married the month after us. What an experience - wedding planning alongside my mother! Then when Zippy was born, Bumpa treated him no differently than he treated his biological granddaughter. It didn’t matter that I was a grown woman when our paths crossed or that he hadn’t raised me or seen me grow up. Once we were family, we were family. Every visit, he had a thoughtful gift for Zippy. He doted on him, spoiled him, gave him too many lollipops and cookies. He snuggled with him, read him stories, carried him on his shoulders. He lit up when his grandchildren walked in a room.

Bumpa snuggling Bee, May 2010

But the trajectory of this story shifts. It doesn’t end like it should, with Bumpa and my mom holding hands in the old folks' home or attending their grandkids’ high school graduations. Because ALS decided to join the party. ALS, short for amyotropic lateral sclerosis. Alias: Lou Gehrig’s Disease. ALS is a progressive, neurodegenerative disease – which means it gradually kills off the nerve cells that control voluntary movement, until eventually the person is paralyzed. About 5,600 people are diagnosed each year, which is actually kind of rare, statistically speaking. But there is no cure and you don’t want to be among the 15 people each day that get diagnosed. ALS is a not the guy you want crashing your party.

Bumpa’s diagnosis was uncertain at first. Weakness in his foot, some symptoms consistent with ALS, but things were progressing so slowly it didn’t seem to be ALS. Until it was. And that’s what sucked. He had always been an active man. Sixty-plus years old, he’d hop on his bike and take an hour spin along the mountain roads by the house. He loved to ski. He swam regularly. He was the grandfather who carried his grandkids on his shoulders and gave them horsey rides.

Suddenly, things began moving so quickly. I remember the progression like this: In January 2010, Bee was born, so Bumpa and my mom came to visit. Bumpa seemed healthy. The signs of the ALS were subtle - things my mom noticed because she as with him all the time but that otherwise I wouldn't have picked up on. Six months later, we had a huge family vacation at the lake. Bumpa had just started using the cane my mom bought him “in case.” He couldn’t walk far without getting tired. He made us nervous using the stairs. That was July. In August they visited again. He and Zippy swam laps together at the pool before Zippy helped pushed him back to the car in his wheelchair. In November, Hubby and the kids and I went home for Thanksgiving. I hoped I was wrong, but I was scared it might be our last chance to spend the holidays together. Bumpa was gaunt and tired. He couldn't walk up the stairs. He had trouble getting out of his chair without help. The man who loved to entertain fell asleep when friends visited. That was all in 11 months time.

ALS is a life lesson in humility. It doesn't matter how strong you were before. ALS will render you unable to do the simplest things without excruciating effort - things like walking across the room for a drink of water, using the bathroom alone, showering. Independence and pride have no place anymore. It is time instead to be thankful for the love of family who will get up every day and keep loving, keep doing for you what you can no longer do for yourself. I can't imagine what happens to someone with ALS who doesn't have family to care for him.

All along, Bumpa kept hoping. He changed his diet. He took special supplements. He prayed and started practicing Tai Chi. He wanted to keep living. My mom kept taking care of him, in every way possible, and just kept loving him. Love truly is a verb.

The part I struggled with most was knowing that my mom's happily ever after, the one she deserved so much, would be cut short. And knowing that my boys would grow up with only memories of Bumpa, instead of the real deal. I grew up without any "warm and cuddly" grandparents, and I want that so much for my boys. Losing Bumpa was losing some of that.

In the end, ALS played only a supporting role in his death. He was diagnosed with cancer a few months before he died. February 28, 2011, he went into the hospital. A day later he was gone. One year ago today. He and my mom had been married just five short years.

We all miss him terribly. Yet I think that most of us (his friends and family) saw the cancer as a blessing because it saved Bumpa from how bad things would have gotten if the ALS could have kept going. It's crazy that cancer can be a blessing, relative to certain alternatives. He would have become paralyzed and had trouble talking, eating, and eventually breathing. He would have been a prisoner in his own body. ALS is an ugly, ugly disease.

In a couple of weeks, I’ll bring the kids to visit my mom. We’ll celebrate Bumpa’s life on what would have been his birthday. We’ll go skiing, just as he would have wanted to do, and we'll have a party. We’ll remember.