Page 5 of 13 FirstFirst 12345678910 ... LastLast
Results 41 to 50 of 127

Thread: Jonathan Received His Wings Today

  1. #41
    Distinguished Community Member SuzE-Q's Avatar
    Join Date
    Nov 2006
    Posts
    1,931

    Default

    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...."

  2. The following 3 users say "thanks"


  3. #42
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,292
    Blog Entries
    1

    Default Change

    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.

  4. The following 6 users say "thanks"


  5. #43
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,292
    Blog Entries
    1

    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 didn’t 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 didn’t 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. It’s beautiful there. And we spent a few enjoyable weekends visiting friends in San Diego, taking the boys to fun places and to the ocean.

    Here’s 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. That’s the best tribute we could ever receive. Imagining it brings me comfort now.

    I can hear people saying, as they did about our wedding, “Well, that’s certainly different!”

    That’s 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.

  6. The following 2 users say "thanks"


  7. #44

    Default

    Dear Rose,

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

    Marcie

  8. The following 3 users say "thanks"


  9. #45
    Distinguished Community Member
    Join Date
    Oct 2006
    Posts
    1,147
    Blog Entries
    9

    Default

    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


  10. The following 2 users say "thanks"


  11. #46
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,292
    Blog Entries
    1

    Default The Rose And The Urn


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

    Yesterday evening, as I was walking back to the house from the mailbox, a gorgeous perfect rose, drinking in the last of the day’s sunlight, caught my eye. Tears, which come so easily now, began spilling down my cheeks.

    “Jonathan,” I whispered. “I know this is for and from you.”

    The roses in the front patio bed have not fared well through the years of drought. After all of our rain, everything is blooming everywhere. Our roses are thriving and promise many beautiful bouquets. This is the first full bloom.

    I ran inside to tell Jim about Jonathan’s rose. He smiled knowingly.

    After Michael passed in May, on December 15, a lovely single red rose grew tall enough for Jon to see it right next to his window. That rose bush hadn’t produced in years. But there it was, the perfect red rose for Jon. That rose lasted until Valentine’s Day 2004.

    We have photos of that rose too. Treasures.

    I grabbed my camera and took a few photos. They don’t really capture the beauty and perfection of this Europena rose, but they provide a lasting memory for us.

    While I realize that not everyone would see the sign from Jon in this lovely rose, I know in my soul that it is, because I have been blessed with 16 years of signs from Michael. Unmistakable signs.

    Speaking of signs, when John and I were driving to the mortuary, he told me that at 4:00 a.m., probably the time, when Jonathan passed, the power went out in his house. His wife woke him to tell him, and they peeked outside to see repairs being made to restore the power.

    John said, “In 17 years living there, we’ve never had a power outage. Never.” He sniffed, “My buddy was letting me know and saying goodbye.”

    “We don’t say ‘goodbye,’ John,” I put my hand on his shoulder. “We say, ‘I’ll see you soon.’”

    In the scope and magnitude of eternity and infinity, our Earthly lives are merely the blink of an eye.


    JONATHAN’S URN

    While waiting for Nancy to arrive, I opened the front door to find two boxes. A tall slender box, with a square box on top.

    The tall slender box contains Jonathan’s Warrior Urn. The square box contains the supplies for Nancy to use next week, when she draws Jim’s blood from his port.

    Jonathan’s urn was a pedestal for his dad’s supplies.

    I brought the boxes in, the square box first. I told Jim that these were his port supplies for his blood draws. Then I brought in Jonathan’s urn, and Jim knew. “Is that our boy’s urn?”

    “Yes,” I creaked, as I walked to the chair to sit down, Jonathan’s urn standing on the floor before me. I wept. I sobbed. I wailed. My hands on the top of the box, my eyes on the beautiful picture of Jonathan on the coffee table.

    Jim handed me kleenex and stayed strong, “Oh honey, I’m so sorry.”

    Then he reached out for me to come over so he could hold me and comfort me. We miss Jonathan so much, and there are no words to describe the depth of our sorrow. Yet, we rejoice in his freedom and his reunion with Michael, for whom we are and always will be grieving. We know that they are together in Bliss.

    But we are human, and the physical separation, on this, the 14th day since Jon passed, is just immense and overwhelming.

    Nancy was late, which was good, because we had some time to decompress and gain our composure. I told her that Jon’s urn had arrived, but that I haven’t heard from the mortuary, so I don’t know anything, and I should be calling, but I’ve been so preoccupied with Jim’s needs.

    HOME

    Nancy asked me, “Is it hard for you to go in Jon’s room?”

    I began crying, “Yes. So hard. Very difficult. And Michael’s room, where Jon received CPR from the paramedics.”

    Really, it’s every square inch of our home and yards that remind me of Jonathan and Michael. They were 6 and 7 years old, when we moved here. Jon lived here for 42 years. Michael lived here for 26 years.

    Jonathan and Michael are the reason we bought this home. I was separated from my former spouse, and he wanted to reconcile. I agreed, as long as we bought a house. “I’m not going to raise Jon and Michael in an apartment. I want a home of our own.”

    We have photos of Jon, Michael and me in front of our giant eucalyptus tree, when it was a mere twig. We have Michael’s garden, and I will create one for Jonathan. To me, our home is sacred, and I fought hard to keep it.

    Love Lives Here.


    FORWARD MOVEMENT

    I must contact the mortuary.

    I must contact Jon’s O2 supplier to pick up the equipment.

    Regional Center sent something in the mail. I haven’t opened it yet. I just can’t right now.

    Our freezer drawer is jammed, and our upstairs mini fridge smelled like burning plastic last night. I unplugged it. John will be home from his vacation on Sunday, so I’ll be phoning him for help.

    All about Jim: in his thread.

    Thank you all for your love, prayers and support during these strenuous and stressful days. We love you and pray for you and your loved ones.

    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.

  12. The following user says "thanks"


  13. #47

    Default

    Dear Rose,

    Jonathan’s urn is beautiful. He was a warrior and will always be remembered that way.

    Keeping you and Jim in my thoughts and prayers.

    Marcie

  14. The following 2 users say "thanks"


  15. #48
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,711
    Blog Entries
    29

    Default

    Quote Originally Posted by Earth Mother 2 Angels View Post
    This quote is hidden because you are ignoring this member. Show Quote

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

    Yesterday evening, as I was walking back to the house from the mailbox, a gorgeous perfect rose, drinking in the last of the day’s sunlight, caught my eye. Tears, which come so easily now, began spilling down my cheeks.

    “Jonathan,” I whispered. “I know this is for and from you.”

    The roses in the front patio bed have not fared well through the years of drought. After all of our rain, everything is blooming everywhere. Our roses are thriving and promise many beautiful bouquets. This is the first full bloom.

    I ran inside to tell Jim about Jonathan’s rose. He smiled knowingly.

    After Michael passed in May, on December 15, a lovely single red rose grew tall enough for Jon to see it right next to his window. That rose bush hadn’t produced in years. But there it was, the perfect red rose for Jon. That rose lasted until Valentine’s Day 2004.

    We have photos of that rose too. Treasures.

    I grabbed my camera and took a few photos. They don’t really capture the beauty and perfection of this Europena rose, but they provide a lasting memory for us.

    While I realize that not everyone would see the sign from Jon in this lovely rose, I know in my soul that it is, because I have been blessed with 16 years of signs from Michael. Unmistakable signs.

    Speaking of signs, when John and I were driving to the mortuary, he told me that at 4:00 a.m., probably the time, when Jonathan passed, the power went out in his house. His wife woke him to tell him, and they peeked outside to see repairs being made to restore the power.

    John said, “In 17 years living there, we’ve never had a power outage. Never.” He sniffed, “My buddy was letting me know and saying goodbye.”

    “We don’t say ‘goodbye,’ John,” I put my hand on his shoulder. “We say, ‘I’ll see you soon.’”

    In the scope and magnitude of eternity and infinity, our Earthly lives are merely the blink of an eye.


    JONATHAN’S URN

    While waiting for Nancy to arrive, I opened the front door to find two boxes. A tall slender box, with a square box on top.

    The tall slender box contains Jonathan’s Warrior Urn. The square box contains the supplies for Nancy to use next week, when she draws Jim’s blood from his port.

    Jonathan’s urn was a pedestal for his dad’s supplies.

    I brought the boxes in, the square box first. I told Jim that these were his port supplies for his blood draws. Then I brought in Jonathan’s urn, and Jim knew. “Is that our boy’s urn?”

    “Yes,” I creaked, as I walked to the chair to sit down, Jonathan’s urn standing on the floor before me. I wept. I sobbed. I wailed. My hands on the top of the box, my eyes on the beautiful picture of Jonathan on the coffee table.

    Jim handed me kleenex and stayed strong, “Oh honey, I’m so sorry.”

    Then he reached out for me to come over so he could hold me and comfort me. We miss Jonathan so much, and there are no words to describe the depth of our sorrow. Yet, we rejoice in his freedom and his reunion with Michael, for whom we are and always will be grieving. We know that they are together in Bliss.

    But we are human, and the physical separation, on this, the 14th day since Jon passed, is just immense and overwhelming.

    Nancy was late, which was good, because we had some time to decompress and gain our composure. I told her that Jon’s urn had arrived, but that I haven’t heard from the mortuary, so I don’t know anything, and I should be calling, but I’ve been so preoccupied with Jim’s needs.

    HOME

    Nancy asked me, “Is it hard for you to go in Jon’s room?”

    I began crying, “Yes. So hard. Very difficult. And Michael’s room, where Jon received CPR from the paramedics.”

    Really, it’s every square inch of our home and yards that remind me of Jonathan and Michael. They were 6 and 7 years old, when we moved here. Jon lived here for 42 years. Michael lived here for 26 years.

    Jonathan and Michael are the reason we bought this home. I was separated from my former spouse, and he wanted to reconcile. I agreed, as long as we bought a house. “I’m not going to raise Jon and Michael in an apartment. I want a home of our own.”

    We have photos of Jon, Michael and me in front of our giant eucalyptus tree, when it was a mere twig. We have Michael’s garden, and I will create one for Jonathan. To me, our home is sacred, and I fought hard to keep it.

    Love Lives Here.


    FORWARD MOVEMENT

    I must contact the mortuary.

    I must contact Jon’s O2 supplier to pick up the equipment.

    Regional Center sent something in the mail. I haven’t opened it yet. I just can’t right now.

    Our freezer drawer is jammed, and our upstairs mini fridge smelled like burning plastic last night. I unplugged it. John will be home from his vacation on Sunday, so I’ll be phoning him for help.

    All about Jim: in his thread.

    Thank you all for your love, prayers and support during these strenuous and stressful days. We love you and pray for you and your loved ones.

    Love & Light,



    Rose
    Hi Rose,

    I have no doubt the red rose is Jon’s gift to you. ITS GORGEOUS! And I have no doubt that John’s power going out was a sign to John from Jon. I can only imagine how hard it is for you to receive the Urn but I’m glad you finally got it since I know it took awhile to find the right one for Jon. The Urn is an absolutely perfect choice! I’m glad Jim held you to comfort you that way.
    Prayers to you all.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

  16. The following 2 users say "thanks"


  17. #49
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,292
    Blog Entries
    1

    Default Jonathan Is Ready To Come Home

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

    Marcie and funnylegs4 ~

    Thank you so much for your prayers.

    The first call this morning was from Zach, who left a message for me to call him. That was 8:15 a.m. I had to take care of Jim's breathing treatments, breakfast, brief changes, vitals, etc. I called Zach about 10:30, and I left a message. Then, he called me and left a message, while I was taking care of Jim. Finally, I called and he answered.

    Jon's ashes have been returned to the mortuary. I asked Zach when Jon was cremated, and he told me Thursday, April 25. I felt more pieces of my heart breaking.

    Zach said that he had been looking everywhere for urns like Michael's urns, and he called several suppliers, with no success. I told him that I know, and that friends and I have also searched.

    Jim and I decided that we would place all of Jon's ashes in his Warrior urn. We don't want anything else, if we can't get the same bronze urn as Michael has. The only suitable one that Donna and I found, with a male angel, is "polystone," which means plastic. We can't put our precious Angel Jon's ashes in a plastic container. Our ashes' ultimate destination is the ocean, where plastic is destroying oceanic life.

    Michael's and Jon's Warrior Urns will sit side by side in Michael's room. And the angel watching over Michael's ashes in his bronze urn will be watching over both of them. Our sacred sanctuary for our Angels.

    I spoke to Zach about the Living Reefs, and he was familiar with the program. He said that he would assist John, when the time came for all four of us to be transferred to a reef.

    I explained to Zach that Jim has been quite ill and was in the hospital, and that I'm devoting all of my time and attention to caring for him. Zach was very kind and understanding, since I'd told him our life story, when we made Jonathan's arrangements.

    Zach gently said, "Take your time, Rose. You have so much going on. I know you want Jon home with you, and when John is able to bring in the urn, we will make sure you have him back. Meanwhile, please know that he is safe with us, and we treasure him."

    I simply have no words to describe how this feels. In many ways, it is surreal. All I can do is try to wend my way through the labyrinth of emotions and heart ache, so that I can be strong to care for Jim. That's what I'm doing.

    Thank you all so much for your love, prayers, support and for being here for us. I know I say this in every post, but you know that we are truly grateful for all of you. I mean every word of gratitude.

    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.

  18. The following user says "thanks"


  19. #50
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    North Carolina
    Posts
    5,532

    Default

    It has got to be heartbreaking and yet so good to have someone tell you they treasure Jon. You know he is safe with them.
    Virginia

  20. The following user says "thanks"


Page 5 of 13 FirstFirst 12345678910 ... LastLast

Similar Threads

  1. What Is Next For Jonathan?
    By Earth Mother 2 Angels in forum Child Neurology
    Replies: 400
    Last Post: 04-05-2019, 09:24 AM
  2. Jonathan's Graduation and Prom
    By Nick,Brian,andJon'sMom in forum Child Neurology
    Replies: 3
    Last Post: 09-03-2017, 09:00 PM
  3. B Received His Wings Today
    By Earth Mother 2 Angels in forum Child Neurology
    Replies: 14
    Last Post: 01-14-2014, 05:56 AM
  4. Replies: 5
    Last Post: 12-15-2011, 09:16 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.