Wednesday, November 24, 2004

Living with MS and Thanksgiving

15 years ago we spent Thanksgiving evening playing with our 18 month old daughter. Megan and the Butterball turkey took turns sliding down her Fisher Price sliding board which had moved indoors for the winter. Breaking out the Christmas stories for bedtime reading, tucking Megan into her crib, we prepared for early bed so we could all get up to watch the Macy’s Parade on TV. We had no idea it would be our last evening ever as a ‘normal’ family.


Patti had previously been diagnosed as ‘probable’ MS. Regardless IT was in remission, her symptoms had been mild anyway, we were younger, and she was FINE. We were invincible. We were both working, had a beautiful daughter, owned a vintage 1904 home, two cars, life was wonderful. It was to be a perfect Thanksgiving.


Horror waited for us Thanksgiving morning.  Patti awoke unable to see, walk, or even talk. In the blink of an eye life had changed. Patti was hospitalized and reeling with her first major MS exacerbation. Holding an 18 month old daughter, I was overwhelmed, unprepared, and facing the most desperate moments I’ve ever know.


5 years ago I awoke in New York City on Thanksgiving morning. Megan was about to perform in the Macy’s Thanksgiving Day Parade as part of the group America Sings. My whole life I had watched this parade on TV. For a whirlwind two days I had been a chaperone through rehearsals, TV sound checks, and all the behind the scenes magic that brings the parade to life. It was like walking through a dream.


Patti’s parents had generously offered to help as caregivers for the holiday. Juggling parenting and caregiving under these circumstances would have been impossible.


Standing along the parade route, obviously I couldn’t help but reflect on Thanksgiving mornings since that desperate one of Patti’s first exacerbation. Patti’s ever progressing disability versus Megan’s growth and what a long strange trip the dual jobs of caregiving and parenting had been in between..


Once the balloons and marchers started rolling by I was as mesmerized as the young kids around me were. I cheered and yelled and clapped half for survival from the cold and half for sheer glee. Suddenly Megan appeared directly in front of me and from parade formation shouted a loud “Hi DAD!” It was one of those manly-man moments when you have to choke back tears.


Patti will wake this Thanksgiving in a 24/7 attended care facility for the first time as MS has progressed. Her Thanksgiving memories are blessedly fragmented. She will spend the day at her parents’ home surrounded by siblings, relatives, and their families as she has for the last 5 Thanksgivings.


Megan and I will wake in NYC for our 5th consecutive Macy’s Parade, this visit as fans and spectators. We both know this tradition is limited. College looms after another year. It’s evolved into special father/daughter time, carved out of living with MS in our family.


Living with MS and Thanksgiving will forever be bittersweet and complicated memories.

1 comment:

  1. what a beautiful and heartwrenching story......

    Happy Holidays!


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