My Friend Shelley Who Has ALS

Shelley

(Photo of Shelley taken nearly ten years ago.)

 

For those of you who have been reading my blog for years, you know who Shelley is. 

For those of you new to my blog: Shelley is a childhood friend who has had ALS for the last fifteen years. Shelley's grandfather, dad, and brother had ALS. Shelley is completely paralyzed. She has a breathing machine, a catheter, can barely talk and within the last few months has a feeding tube.

Shelley is a force of nature, a miracle, a warrior, a friend, a mother, a wife… She lives with this terrible illness with such grace that I am often reminded, "Compared to Shelley this is a cake walk. Now stop being (inject what ever adjective that is not a happy one: Tired, frustrated, bored, angry, feed-up, moppy, lazy…) and rise above it.

Shelley is my measuring stick, my compass, my guide to being a better person.

Shelley inspires me. 

Shelley's husband Eric, is her rock and steadfast love. Most men, and I am not exaggerating, not even one little bit, do not even measure against the incredible giving love that he has. He utterly AMAZES me. There is nothing he cannot or won't do for his wife Shelley.

I feel I am playing "Catch Up" on my blog. Yesterday, I spoke of Annie. Today Shelley. Tomorrow Thierry.

I will see Shelley when I go home. I know it will be very hard to understand her as her voice is very weak. But I know I will feel her ever present love, her friendship, her courage and I will cry. 

What is happiness? What is love? What is living? What is life? It is what I see between Shelley and Eric. A gift.

 

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A few year's ago Eric sent me photos of their home at Christmas. Shelley's favorite time of the year. 

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My friend Shelley loves Christmas. Every year her home is transformed into a Christmas wonderland. Shelley decorates the tabletops, the counters, shelves, every nook and cranny (even her bathroom!) with her large collection of vintage Christmas symbols of happiness. As you can see Shelley's hutch (that usually contains flow blue dishes,) becomes a new home for her large collection of vintage Santas.

 

 

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Shelley's family are her hands, they put Christmas "up" listening closely to her keen eye details they follow her instructions like Santa's helpers. They set up the magical wonder that Shelley has imagined and made true for her family.

 

 

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Receiving Shelley's Christmas photos by email makes me feel like I am by her side. Christmas at Shelley's house is a feast for the senses. I can almost hear the Christmas carols, the jiggle bells and smell the aroma of freshly baked Christmas cookies. Not one detail is left out.  Shelley is a Christmas legend… often I think Santa and Shelley have something going on? I should ask her husband what he thinks about that? Wait maybe her husband Eric is Santa? Why didn't I think of that before!

 

 

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When Shelley's ALS illness first started her hands began to fail her. A friend came over to help her wrap her children's Christmas gifts. Before Shelley's friend started to wrap the gifts, Shelley told her, "I traditionally wrap my son's gifts in red paper, my oldest daughter's gifts in green paper, and the youngest child's gifts with white paper with checkered ribbon." The friend was taken back, shaking her head she said, "At this point Shelley, you can no longer do the things the way you use to do them. You  need to let go. Do you think it matters how the gifts are wrapped?"

Now here is the thing that I admire about Shelley: The little things DO matter to her. She told her friend, "As long as I am alive I will keep my traditions, if I cannot do them I will find someone who will do them for me. If you do not want to wrap the gifts the way that I want that is fine, just leave them unwrapped."

 

 

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Ah to have the courage to follow your desire! To live your life the best way you can even in the midst of being so very ill. To be able to be honest with others, to the point of saying no to a friend, even when they are there to help you. To be true to what you need, and live gracefully, honestly and encourage others to do the same. I have learned from Shelley that the little things do matter, and that setting up traditions keep memories alive.

 

 

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Tree toppers galore fill a basket. Are you the star that lights the way?

 

 

 

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I could go on and on with Shelley stories. I could tell you how she decorates, and how her family is the rock of her foundation. How her home is inviting, and full of love. But I bet you can feel that from her photos?

You know come to think of it…Maybe her husband Eric is Santa (!?) and her children Britton, Brent, and Garret elves? I always thought of them as saints of goodness….

 

 

 

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Please feel free to send Shelley your Christmas Cheer.

By contacting her on FACEBOOK: 

https://www.facebook.com/shelley.davisetchepare?fref=ts

  

 



Comments

16 responses to “My Friend Shelley Who Has ALS”

  1. the quintessential California girl inspired by her and her whole family-once again thank you for sharing her with us we are surely the richer for it!

  2. Dear Corey,
    I am not on Facebook but I am sending Shelley many hugs from sunny Los Angeles (where the high today is 53 degrees, brrr) and best wishes for a Merry Christmas. What a beautiful family she has!
    I love the tree toppers. Some of those look old ? like 1950s or 1960s?

  3. I’m not on Facebook either, but Corey, when you see Shelley, please tell her that there are many of us who are nonetheless virtually reaching out to wish her happy holidays! Wish I were in Northern California…

  4. Thank you for the update on Shelley. She is a dynamo and such an inspiration. To help someone continue their traditions after their bodies/minds will no longer allow them to do it themselves, is the greatest gift you can give someone. Even on her death bed, my Gram wanted holly in the pink satin holly pitcher. She had done so since before I was born and since I loved to garden with her, she trusted me to know what branches to cut and how to arrange them (with help from her). It was the last thing we did together and yet, I remember her smile and tears like it was two hours ago. Learning what brings others joy is a lesson we can all learn. 🙂

  5. Dawn Fleming

    What an inspiration your friend is, I will send her Christmas wishes on FB.

  6. I’m not on Facebook either, but was to wish Shelly and her family the Merriest of Christmases!
    Thank you again for sharing her story and home. We are blessed by hearing about the beautifully special friends you have. Daisy and her family would certainly fit into this series too.

  7. What a very special family (and I include you in that family, Corey). Thank you for including the photos; it is wonderful to see all the beautiful Christmas decor Shelley has collected over the years 🙂
    As long as you are sharing updates, do we get to hear about Daisy?

  8. Sorry…you know that comment was me, right? 🙂

  9. I don’t have a Facebook account but perhaps someone could convey my most deeply felt wishes for Shelley’s Holidays this year. From one Shelley to another, from one who loves Corey to another, a most Merry Christmas, dear Shelley.
    Unconditional love imagined and made true for all to see by people like Eric, Shelley, Yann, and Corey.

  10. how wonderful, I’m with you and Shelley on the tradition and the wrapping of her presents her chidren will remember simply forever, I know I would, I find it quite endearing and love Shelley’s Santa Claus collection ~ I’m with Shelley, go all the way and my memories of those lights on the Christmas tree all night as I walk around the house in the quiet, for a snack or just to lay on the sofa, in the quiet, peace, and the wonderful feeling of feeling so safe at home with my parents…..
    i just love this ~ Merci ~ XO

  11. Life is never predictable! What a lovely example Shelley is for all of us to see!
    Thank you for being the one to show her to us!
    The best thing about “Facebook” is stories like this can spread all over the planet…..and give hope to those who have none1
    I am not making a stand in any way about “Facebook”! (I joined because my daughter, son-in-law and three little grandchildren moved to Spain for a whole year!
    My son-in-law loved Facebook……the reason I joined is that realistically; I couldn’t keep up with phone calls……..(9 hours difference…..tried that lately?)
    So I knew where my grandchildren were most of the time! And I still felt a part of their lives!
    I am so grateful to my son-in-law!!!
    Now I love Facebook…..because of the old friends……..gosh!
    It is really great!!!

  12. What a steady character and beautiful woman…admirable… and I asked myself if I could do so? I also demonstrate deep respect for her wonderful husband and wish all the family a happy future.

  13. Blessings for your lovely friend and I am so glad you will be able to see her…………..
    Big hugs and much love and prayers and blessings
    Love Jeanne

  14. She’s an inspiration even for people who don’t know her. I’m glad you gonna see her for Christmas

  15. What a woman! I felt the love and the Christmas spirit from each of the photos; so glad “Santa” shared them with you and now with us. Thank you, Corey, for sharing Shelley and her family’s gift of love. This is the true meaning of giving at Christmas! !
    P.S. I am giggling as I read your words, “I can almost hear the Christmas carols, and the JIGGLE bells…” Love, love, jiggle bells — they can jingle and jiggle away and make me smile. Hugs

  16. I tried to leave a message for the SUPER MAMMMA DIVINE but couldn’t find the spot!!!!On that FACEBOOK………..and if you hit MESSAGE at the top it gives you options I do not want!NOt too much a fan………BUT I can say this here I totally GET YOU SHELLEY about the Christmas wrap!!!The details MATTER……………..the tradition etc………..YOur house is lovely. I adore your collections………I have many tree toppers too.You have made CHRISTMAS a very special time for your children and husband…………they will keep going with it I am certain and I bet your adorable beautiful children will continue the “WRAP” tradition with their children………..MERRY CHRISTMAS!!!!

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