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Thread: A Blog Post about My Friend/Mentor - A Sad Day Today

  1. #1
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    Default A Blog Post about My Friend/Mentor - A Sad Day Today

    Hi Everyone, here is the link - http://www.donnathomson.com/2014/09/...ar-friend.html

    The photos are there and the blog post minus photos is here on the Blogs link at Braintalk. I am so happy that others have begun to post blogs too! :)

    Btw, I am on a train enroute to a family conference about Dravet Syndrome - I'm speaking about resilience, optimism and advocacy. I've read about Dravet but I don't think I know anyone here whose child has it - am I wrong?

    Love to you all - feeling grateful for my life, my family and my friends today. xoxo
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  2. #2
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    Most of the families on the pediatric cannabis sites I am on deal with children with Dravet Syndrome. Most of Charlotte's Web is geared for treating kids with Dravet's and very successfully. When I spoke at the brain symposium last year, both women on the panel with me were Dravet parents.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Donna)))))) ~

    My heart goes out to your dear friend, Kathleen, as she begins her grief journey for her beloved husband of 47 years, Bill. Losing one's spouse, especially after a long union, is extremely difficult and painful. I have watched that in my family and among my friends. It is as if half of you has vanished. Kathleen is so blessed to have you as her friend. I know you will be there for her to support and love her every step of the way.

    What a pioneer Kathleen is, and I thank her for all of her efforts on behalf of persons with disabilities. How wonderful that her son, Chris, is living independently. I visited your private blog, so I could view the photos. Chris looks very happy and content with his life. Who could ask for more than that?

    When it is our turn to leave this mortal coil, will we be able to say that we had a life well-lived? As the adage goes, it's not about the dates of birth and death, it's about the dash in between. Bill, Kathleen, You, Jim, their children, your children ~ beautiful dashes.

    May God rest Bill's soul and grant peace and comfort to Kathleen, their children, grandchildren, family and friends.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Thank you so much for your loving and compassionate words, Rose. I will share them with Kathleen and her children. I know that they will be comforted by knowing that another person they have never met, but who shares the experience of a lifetime of caregiving has offered her prayers of peace and comfort. You are wonderful xoxo
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  5. #5
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    ((((((Donna)))))) ~

    Awww ... you're wonderful too. Thank you.

    This poem has brought me tremendous comfort on my grief journey. Please share it with Kathleen and her children ~

    The Traveler


    He has put on invisibility.

    Dear Lord, I cannot see—

    But this I know, although the road ascends

    And passes from my sight,

    That there will be no night;

    That You will take him gently by the hand

    And lead him on

    Along the road of life that never ends,

    And he will find it is not death but dawn.

    I do not doubt that You are there as here,

    And You will hold him dear.

    Our life did not begin with birth,

    It is not of the earth;

    And this that we call death, it is no more

    Than the opening and closing of a door—

    And in Your house how many rooms must be

    Beyond this one where we rest momently.

    Dear Lord, I thank You for the faith that frees,

    The love that knows it cannot lose its own;

    The love that, looking through the shadows, sees

    That You and he and I are ever one!

    ~ James Dillet Freeman

    Healing ((((((HUGS)))))) to Kathleen, her children, you and all of Bill's loved ones ~ May you feel Bill's presence very near you ~

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  6. #6
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    This is so so so beautiful. Thank you and I will share now. Love, Donna xo
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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