Tuesday, June 19, 2012

when a parent has multiple sclerosis

“Because life did not give me a manual when it gave my Mom MS” … This banner from a blog entitled MS Recess captured my attention as I began reading the thoughts and experiences of a young woman sharing the changes to a family.
Not only is it powerful but rather unique in that her Mom was diagnosed relatively recently, 3 years ago, and at a later age of 56. So the entire family dynamic is almost two decades older than ours at the geneses of living with Multiple Sclerosis.

The blog author was 25 when MS joined their family; our daughter was 18 months when Patti was hospitalized with her first MS exacerbation 22 years ago.

Our daughter has never known her Mom as an able bodied person.

The blog author refers to her Mom as a best friend and how hard it is to watch the changes.

The blogosphere can offer limitless views of living with Multiple Sclerosis. Yet no mirror in the universe reflects quite like children (of any age) and not enough is heard from them.

I encourage you to drop in for some MS Recess

Caregivingly Yours, Patrick Leer 

8 comments:

  1. I will stop by; I am sure it is a change for that family. And I understand your daughter's situation in that she never knew life that she can remember with a mom that was physically able to take care of her, etc., kind of like me not knowing how to grow up with a dad, so I do understand and sympathize. Life sure can be interesting.....

    hope you are enjoying summer Patrick and Patti!

    betty

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    1. Thanks Betty and yes as I think I commented on your blog that was a powerful Father's Day entry about not growing up with a Dad.

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  2. Thanks for the link, Patrick. I stopped by and left a note. It's difficult for our children to see us this way.
    Peace,
    Muff

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    1. yes "how our children see us" our daughter commented on my jet ski accident and how for a moment in time when she was 12 she worried about having two disabled parents as I lay in the hospital emergency room strapped to a body board .... then against doctor's orders I rose up, signed myself out of the ER and painful step after painful step finished our weekend vacation. Of course it's different in that you can will yourself through pain because its how our children see us but not will yourself through MS.

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  3. I was diagnosed 4 months before our first child was born, they never knew the me I remember.

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    1. love the way you phrase that 'the me I remember'. Even though I have been my wife's caregiver for far longer than I ever knew her able bodied, she certainly remembers.

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  4. From a child's perspective...we all see MS differently as it effects us

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