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Thread: Jonathan Received His Wings Today

  1. #41
    Distinguished Community Member SuzE-Q's Avatar
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    Dear Rose,

    I hope you and Jim had a quiet, restful day, and Jim's breathing treatments continue to give him some relief.

    I hope your back wasn't too sore today.

    I hope today was a peaceful day for you both, especially after making the decision not to rush Jon's service, but to do it when the time is right. You couldn't understand why everything wasn't coming together for it, but perhaps you were receiving signals that it wasn't the right time, and you heard the message.

    I wish we were all closer to offer you better support, but please know that we are here to listen to you and be there for you from a distance. You are such a kind, thoughtful presence. I knew "of you" for years, but, I am so glad you decided to venture onto the MS forum and reach out personally to us there and we were able to get to know you better.

    I send much love, prayers and support to you and Jim this evening.
    Please Note that my posts may have been arbitrarily altered by a Moderator and may not reflect my original content.

    Per Mike Weins: "...the admin/mod team doesn't have to provide a forewarning/warning/mention about altering a members post. It doesn't matter if they fix a link, remove a link, fix a typo, or whatever...."

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  3. #42
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Screen Shot 2019-04-21 at 9.39.31 PM.jpg
    Remember Us This Way ~
    Dancing



    ((((((Hugs to All)))))) ~

    This morning, I opened a beautiful Jacquie Lawson e-card from our dear friend, who is 95 years old.

    https://www.jacquielawson.com/sendca...741&pmode=init

    I wept. I silently sobbed. I grieved. I needed to do this, and I know that I need to do this as much as possible, without falling apart completely.

    The tears release hormones, which are healing. As does laughter, which is why Jim and I try to laugh every day. We make jokes with nurses, aides, doctors in the hospital. And with the EMTs. And we've told them all that our precious Jonathan passed on April 12. I think they are all stunned by that revelation, because we are going through so much with Jim. And it is too much. It really is. But, we're still here, and we have to deal with Jim's crises and needs.

    Every grieving parent I've met on line and in person stated that when their child died, the world stopped. Time stopped. They woke up the next day, and it was like the worst imaginable nightmare, surreal. It didn't happen. Then you realize that the sun is shining, and the world is still turning, and people are getting on with their lives.

    I am in auto mode, as it is after losing a child. Things must be done, so they get done. It's just that the things that need to be done for us are Jim's care and serious issues.

    We know our Angels are watching over us. Jim's WBC came up with Neupogen this time. That was the miracle, for which we were all praying, as Dr. K told us Jim would die without it.

    I talk to Jon and Michael all of the time, constantly, and my heart is filled with sorrow and joy. I had a long conversation with them last night, when I finally laid down in bed for rest and sleep.

    After reading and crying over the e-card, I decided that it was time for me to change my signature. I've had the same signature for 19 1/2 years, with the exception of the change I made in 2003, after our Angel Michael passed.

    I had been thinking about how I would change it, and what that means.

    Although I have told all of our friends, family, doctors, nurses, health care people, ambulance drivers, strangers that Jonathan has passed, changing my signature here is significant to me.

    Jonathan and Michael brought me to BrainTalk. They brought me to you. To all of you wonderful, loving, caring, supportive, understanding, compassionate, kind, warm, beautiful people.

    You helped me provide the best care for them with your knowledge, wisdom and experience. You supported us every time we were in the hospital. When Michael passed, you gathered around us with a comforter of love and kinship.

    And now you are embracing us again with that same comforter for Jonathan and for Jim.

    You've read all of my long, rambling posts, and continue to do so. You have given me a venue to share our story and our journey. While this is so therapeutic for me, I pray that others learn from us. We want our lives to have a positive impact on others.

    I knew the minute Jon and Michael came into my arms that God had a dual purpose for me. He blessed me with two Angels and the ability to communicate. I used that ability to fight for them and their peers, to change laws and improve the social network to support them. That ability allowed me to communicate with hundreds of doctors in dozens of hospitals for nearly 50 years.

    And that ability has provided me with the opportunity to share worldwide with all of you the challenges, triumphs, and sorrows we have encountered on our journey.

    I thank you all so much for your listening, loving, and prayers, and for everything you have shared with me to enrich our lives and help us find our way.

    We love you!

    Love & Light,



    Rose
    Mom to Jon, 49, (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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  5. #43
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Default Life After Life


    ((((((Hugs to All)))))) ~

    In 2001, Jim and I began a discussion about what we wanted for Jonathan, Michael, and ourselves, when we each passed. We agreed upon cremation for all of us.

    We didnít want a grave in a cemetery, which no one would visit. We felt that if Jonathan and Michael passed before us, we wanted their cremains in beautiful urns to keep them close to us.

    But what happens to our cremains, when all of us have passed?

    When Michael passed, we visited the cemetery, where my parents are buried, to look at the options for urns. It just didnít feel right to us.

    So, we began internet searching. We found a place in Florida, Eternal Reefs, which blends cremains with concrete to make reefs to place in the ocean. The reef creates new life and nourishes the sea.

    While our souls are together in Bliss, our Earthly vessels will be feeding the planet. We will be giving back to Mother Nature.

    Today, I found a similar organization located in California. This will likely be our choice, as the cost is less, and it is closer to our home, which would facilitate having our cremains transported for the reef creation. Also, should any of our friends/family want to participate in the placement of our reef, the distance would be doable for most of our California loved ones.

    The location is in Baja, California, near Los Coronados Islands. Itís beautiful there. And we spent a few enjoyable weekends visiting friends in San Diego, taking the boys to fun places and to the ocean.

    Hereís the link to Living Reefs (be sure to watch the video):

    http://livingreefmemorial.com/

    This video shows the deployment of the reef:

    http://livingreefmemorial.com/see-a-deployment/

    We like visualizing our loved ones on a charter boat off the Islands, listening to our favorite music, holding candles, wearing leis, having access to food and beverage, and watching the placement of our reef. At sunset.

    When they return to shore, I hope that they will find a great restaurant, preferably one with a jazz ensemble, or any kind of live music. Laugh, cry, share memories, dance. There will be a lot of love and hugging. Thatís the best tribute we could ever receive. Imagining it brings me comfort now.

    I can hear people saying, as they did about our wedding, ďWell, thatís certainly different!Ē

    Thatís us. We are different and proud of it!

    Blessings upon all of you and your loved ones. Our prayers are with you, and we thank you for your love, prayers and constant support for us.

    Love & Light,



    Rose
    Mom to Jon, 49, (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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  7. #44

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    Dear Rose,

    Your plans sound lovely. It’s a beautiful tribute for all of you. Continued prayers going up for you and Jim.

    Marcie

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  9. #45
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    What a WONDERFUL idea for a living memorial, Rose! This is just beautiful. Thank you for sharing!
    xoxo Donna
    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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