Tuesday, November 22, 2011

“Think you can make it, pilgrim?” / MS caregiver


When the 53 surviving Pilgrims celebrated their successful harvest in autumn of 1621, I suspect that even in their wildest imaginations none could ever have foreseen the future rite of passage for kids and parents known as the school Thanksgiving play.

Certainly Patti never imagined she would watch seated in an electric scooter as our daughter played a Pilgrim mother who gave birth onboard the Mayflower.

Here in the now, this will be the 22nd year that Thanksgiving is infamously intertwined with the dawn of living with Multiple Sclerosis as a family.

My memories of morning cooking aromas, leaf piles, and the Macy’s Parade on the TV were shattered looking into the fear in Patti’s eyes as she awoke that morning in 1989 realizing she could not walk, and could barely see or talk.

Waking up Thanksgiving morning should not be a watershed moment in one’s life.

Four years earlier Patti had a brief period of numbness and tingling in some fingers. With symptoms ending sooner than tests, a diagnosis of “probable” Multiple Sclerosis while devastating in the moment seemed less probable as time passed.

Years passed, no symptoms returned. Life was good; homeowners, two jobs, two cars, ‘two cats in the yard’ and a healthy happy daughter. 

Absolutely underprepared for what was happening that morning, somehow I found Patti’s neurologist’s number and called. Duh! It was Thanksgiving morning of course he was unavailable. An associate returned my call, arranging hospital admission.

Simultaneously our 18 month old daughter was stirring and ready to get up. While I had been as involved, if not more than involved, for a guy in the late 1980’s I had not been the lead parent much less ever have juggled parenting and caregiving.

I never felt more alone and overwhelmed.

“Think you can make it, pilgrim?” John Wayne

Caregivingly Yours, Patrick Leer 

6 comments:

  1. What Thanksgiving was for you, Christmas was for me.
    :-(
    I think it is absolutely amazing that you have weathered the storms of this disease the way you have; as in, you're not shell-shocked into muteness. Keep telling us your stories.

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  2. I have no words, Patrick. I can't imagine the shock and horror of it all through the years and the unexpectedness of it. I think Judy said it so very well that it is amazing (absolutely) that you have weathered the storms and you also provided sunshine for Patti in making her life as productive and meaningful as it can be over the years.

    Okay, I have to say though. I don't think of any Pilgrim play I have ever known of a character that was portrayed as a mom giving birth on the Mayflower. While I'm sure it happened, interesting twist to the traditional Pilgrim story we hear.

    All in all, I'm thinking you will still have some thankfuls this coming Thanksgiving. May it be a happy one for you all!

    betty

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  3. Being single, I sometimes feel very overwhelmed and alone trying to manage things especially on days when I know I'm not clear. But I always am grateful that it's just me and I don't have kids to worry about too.

    Not only have you made it, but you done good Pilgrim.

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  4. Betty, yes I too learned something new from that school Thanksgiving play. :) The child born on the Mayflower was named Oceanus Hopkins, mother Elizabeth (Fisher) Hopkins.

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  5. I can only imagine how that would feel. I am glad I had no kids when my EX walked out. If I had kids to raise, OMG I would be flipping out.

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  6. Wow that must have been completely devastating! Most MS diagnoses come about very gradually, I think - as did ours with Don. And the impact on your life with a young family -- unimaginable! My heart goes out to you.

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