Tuesday, October 4, 2011

New, Different

I am appalled that it’s taken me almost four months to update my blog. When I first kicked off this little campaign, the goal was to post one new entry every month. Seemed manageable enough, and it really should have been; but I’m not too proud to crack open the tome of excuses. Ready? Work went from zero to insane overnight; the house was a mess; clothes had to be washed; meals had to be made; and the kids needed to be read to, played with, fed, bathed, and snuggled off to sleep every, single night. (Not that I did any of this alone. Darren is always right beside me in the daily blitz, helping to do every little thing that needs to get done. He is a gem, and soon, there will be an entry all about him and the many ways he helped my dad these past years. You will love him.)

And then there was Father’s Day. I knew it would be hard; but I had no idea the raw, crushing grief that I felt last October would come back with such fury. There were many times on Father’s Day when I wanted to sit and write about my dad; but every time I switched on my laptop, I saw this and froze:

I set this photo as my background image the day my Dad died, while I sat cross-legged on my bed and wrote his obituary. Photos were a godsend that day, and in the days and weeks that followed. I poured over them, desperate to see his healthy face and the curl in his upper lip, and desperate to scrub away the memory of him in the hospital. Pictures had been so cleansing, so healing; but on Father’s Day, they were just a cruel reminder that they were all I had left.

The rational solution might have been to change my background image; but I couldn’t bear it. Instead, I redirected my energy and set off on a mission for a Yankee-themed bouquet of blue and white flowers for Dad’s crypt stone. The woman behind the counter of the flower shop was young and warm and chatty, and she asked me about my dad. I told her that he had ALS and, for the first time ever, a stranger knew exactly what that meant. One of her regular customers was diagnosed almost two years ago and she had watched him deteriorate with every visit. She put a hand on my arm, told me how sorry she was, and hurried about the store in search of navy and white ribbon. She even Googled the Yankee emblem, printed and laminated it, mounted it on a pick, and placed it carefully in the bouquet. It was perfect. I thanked her and headed off to the mausoleum for quiet time with Dad. A very different Father’s Day, indeed.

The summer months that followed zipped by in a blur and, like Father’s Day, they were just… different. Once upon a time, every summer weekend was spent at my parents’ house – swimming, grilling, watching Ellie run and play with her cousins in the yard, lounging on the deck, and talking with Dad.  I loved every minute of it, especially the talking-with-Dad bit. He was so relaxed and down-to-earth. He liked to talk and he liked to listen. He liked to share and he liked to learn. But above all, he loved a good story. Darren and I would tell him about goofy things that happened with the kids, friends, or work, and he would throw his head back and laugh. I loved watching my dad anticipate the punch line of our story. He listened intently, grinned, and his eyes changed as we spoke. We knew that our words were taking form in his mind and he was right there with us, feeling the hilarity of the moment first-hand. Not many people listen like that. He was so unique, so special. Sadly, both seem to be prerequisites for this shitty disease.

Darren and I brought the kids over to my Mom’s to swim and play and lounge on the deck twice this summer. Twice. That’s it. Call me selfish – I know the kids would have loved many more trips to the pool – but I couldn’t stand the Dad-shaped void on that deck. I couldn’t stand not hearing the announcer of the Yankee game over my dad’s portable radio. I couldn’t stand not lounging in a seat next to him and watching him anticipate the punch line of my ridiculous story. I usually love summer. This year, I couldn’t stand it.

I have missed the catharsis of writing about him and I’d love to get back to making a little noise for ALS, so the plan now is to do a much better job at populating this blog. I love reading your comments, and I’m so grateful for the (surprisingly many) people who reached out to share their experience with ALS or offer words of encouragement. More to come soon, so please keep reading!