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Thread: Remembering Jonathan

  1. #11
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    ((((((Hugs to All)))))) ~

    Virginia ~

    I donít quite understand what you mean by, ďI wonder if they favored.Ē Please explain, and I will try to give you my best answer.

    Michaelís room is a sanctuary filled with gifts given to us after his passing and ones we have chosen for birthdays, Christmas, etc. Angels everywhere. Candles everywhere.

    Now, Michaelís room is their room. Jonís monogrammed baseball cap has joined Michaelís cap on the credenza. Their urns stand side by side.

    Because our gold wrought iron Christmas tree is too difficult to disassemble and reassemble, it stands lit 24 hours a day with white lights and angel ornaments. Under that tree, I placed Jonís heart stone, as I donít want it to be weathered, and I want us to be able to see it every day and night. This is where Jonathan rested finally. It is fitting that his stone sits there.

    Directly outside of Michaelís window, we can see his waterfall/pond garden. Directly out of Jonathanís window, we can see his still-in-progress garden.

    Iím going to hire our gardeners to clean it out, remove the existing wild rose, the only thing growing there, turn the soil and put in new soil and fertilizer. Iím still searching for succulents and blooming cacti, and a small tree. Our neighborís useless ornamental fig tree will need to be kept trimmed back on our side. It drops very dangerous hard seeds, which I fear I will slip on someday. And all of it falls into Jonís garden.

    Today, I sat on Jonís chairbed, while Jim had his shower, so I could be near in case he needed me. I surveyed Jonís room, thinking about what I want to keep and remove. I sat there long enough for all of the memories of that morning to flood over me. It doesnít take long, which is why I avoid sitting in his room.

    At some point, I will move past this anguish. Until then, I will take small steps at a time.

    It is helping us to have tributes to Jonathan and Michael. Weíre still doing something for them. And we always will.

    I recall after visiting my parentsí graves, driving around the cemetery to the exit. On the curve was the area for babies and children. Their graves were decorated with so much love, flowers, balloons, whatever was permitted by the cemetery.

    So many of the grieving parents Iíve met online and in real life decorate their childrenís graves, have a garden or a space outside where they plant a tree and flowers, and a space inside their home with photos and candles. This keeps their memory alive, and it helps us to feel like we are doing something, anything, for them.

    Thank you for your love and prayers for us, Virginia. You and your loved ones are in our prayers. Please take extra good care of yourself.

    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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  3. #12
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    ((((((Hugs to All)))))) ~

    Donna ~

    I am so sorry that I missed your momís Angelversary. It is wonderful that Natalie is with you and that both of you can remember your mom together. What remarkable women: your mom, you and your daughter. Healing prayers for peace and comfort on the way to you ~

    I know what you mean about visiting your mom through photographs. I talk to Jonathanís and Michaelís photos all of the time. Jim says that Jonís photo on the coffee table seems to come to life for him. This is so true, because it captures the very essence of Jonathan. We are forever grateful to John for having his phone with him to snap these treasured photos of Jonathan.

    About my former spouseís wedding ~ that marriage didnít work out either. I liked her, and she was good to Jon and Michael, very loving and caring. I knew it wouldnít last. But she chose him, so I wished her well. I didnít want to have to break in another stepmother. And, I didnít have to do that, because he abandoned Jonathan and Michael, before he divorced his second wife.

    And you know what? That was just fine. Because thatís when Jim came into our lives. Jonathan and Michael had a wonderful, caring, loving, devoted Dad, who was there for them in every way to the end.

    I know that youíre having a fabulous visit with Natalie and Alex, and Iím so happy that you have that magnificent, serene setting to relax and enjoy each other.

    Sending love and prayers to you all ~

    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. #13
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    ((((((funnylegs4)))))) ~

    Thank you! I'll keep praying for good news for you!

    Yes, I am well-known to be a worrier. As Jonathan's and Michael's mother, worrying is deeply entrenched in my being. This is why I hope that everyone on our forums has told someone that they post here, so that if something happens to them, that person can let us know.

    Like Jon and Michael, Patty and Julie would be near 50 years old now. Patty's parents were older than me, so they're probably deceased. Julie was a foster child, and her care was very poor. I have no way of finding out what happened to them. All of those contacts have been gone for decades now.

    But, my intuition tells me that Patty and Julie are with Jonathan and Michael in the Light. I wouldn't be surprised, if Patty and Julie passed before Jon and Michael, because their level of care was not comparable to the care Jim and I gave to our boys.

    It comforts me to visualize Jonathan and Michael with all of their schoolmates now. So many children passed, while they were in school. We attended a lot of funerals.

    I remember one for a sweet boy in Michael's class. During the service, Michael was so vocal, which was unlike him. He was exuberant. When I got up to take him into the lobby, so we wouldn't disturb the service, the boy's mom said, "No, please stay. Michael knows that he's free now, with God, no more pain. Thank you, Michael for rejoicing in his freedom."

    At the funeral for another beloved young man in Jonathan's classes, I didn't bring Jonathan, because I was afraid he would be too upset. Jon's life skills teacher and Boy Scout leader said to me, "Death is part of life. Our kids have to learn this."

    "I know, but Jonathan is very sensitive, hormonal and vulnerable right now. I don't think he could handle this," I responded.

    After the service, several of Jon's classmates, including Patty, surrounded me, hugging me and clinging to me for comfort. Other than the young man's Mother, I was the only Mom at the funeral. I hugged them all and we stood in a circle, holding hands, as I said a prayer. Then, we hugged some more.

    That afternoon, I sat with Jonathan and Michael and described the funeral, and we held hands and said the same prayer. I may have made a mistake in not taking Jonathan, but at the time, he was very moody, and I just didn't want to upset him.

    Of course, Jonathan and Michael know far more about life and death than I do. They always have.

    I'm glad you got a chuckle out of the wedding story. In truth, I made more than one snarky joke. He deserved it. And, he knew it.

    I'll be anxiously awaiting your good news!

    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. #14
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    Rose I was wondering if they looked alike. Here we say did they favor when we are trying to find out if a sibling looked like another one or a parent one of her children. Maybe it is said in a different way there.
    Virginia

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  9. #15
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    ((((((Virginia)))))) ~

    Oh, I understand. It's a Southern expression.

    In some ways, they did favor each other. Big, gorgeous, brings you right into their soul blue eyes. Fair complexion. Sweetness and innocence.

    Jon was 6'1", and Michael was 5'2". Jonathan's hair was blond then turned light brown. Michael's hair was always strawberry blond. Michael had a few freckles, but Jon had none. I've been told many times that they look like me, and I am a combination of mostly my dad, but as I got older, a lot of my mom showed up in me.

    Here are some photos when they were young and when they were adults (with Jim):

    Screen Shot 2014-02-22 at 7.09.34 PM.jpg

    Screen Shot 2019-01-20 at 6.23.48 PM.jpg

    They were definitely two peas in a pod. They spent so much time together throughout their lives, and they truly loved each other, and missed each other when one of them was hospitalized. Nearly every day for 16 years after Michael passed, Jonathan mentioned Michael to us. He talked about Michael so much, and we knew they were connected. As one friend observed, they each had one foot on both sides.

    It's impossible to describe how much Jim and I miss Jonathan and Michael. But, we are confident that they are together, happy, whole and free, and we rejoice for them.

    Thank you for asking, Virginia. You know I love talking about my boys.

    Healing prayers on the way for you and for the heat wave to subside.

    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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  11. #16
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    Thank you for sharing these precious photos, Rose! They are so beautiful.
    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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  13. #17
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    Rose, I just loved the photos. I am so glad they were so close. They are probably still getting caught up and just happy to be together. They have so much to share.

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  15. #18
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    Default Turning Point

    Screen Shot 2019-08-22 at 5.46.28 PM.jpg
    Knights of Columbus Fair, 1992

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

    Thank You Donna & Virginia. Jonathan and Michael were born a year and 4 days apart, so they were very close, almost twin-like.

    Iíve been on a cleaning mission recently, having left our home in disorder for too long. I ordered a cordless scrubber for the bathtubs and floors, because manually scrubbing and mopping was just too painful. Itís doing a pretty good job, considering the conditions of our old tubs and the cheap piece of linoleum on the kitchen floor.

    After 8 years of constant service, the Dyson stick vacuum battery gave out. It took me a few hours of searching and calling Dyson, before I found a replacement battery. Amazon had it here the next day, and I vacuumed the rugs and floors in every room but Jonathanís room. The new battery gave the vacuum more power, obviously, so I had to wrangle it, but it was more efficient and worth it.

    I wanted to use the handheld part of the vacuum to suck up the termite debris on Jonathanís window sill. I couldnít get the machine apart, so I started vacuuming Jonís floors. The more I did, the more I realized how long I had neglected Jonathanís room. Dust everywhere.

    Suddenly, I was compelled to keep cleaning. I started by collecting everything on his side tables, which could no longer be used, and then everything else in sight that needed to be discarded.

    I unplugged everything, cleaned the cords, and gathered them together out of the way, as they may be needed again someday for Jim. I never rule out that possibility.

    I dusted everything and washed his window. I had kept towels on his side tables to keep everything on them clean. I removed those.

    After rearranging Jonís closet, I placed the assorted things weíd been stowing in his room there, including one of Jimís two bed wedges, which he no longer uses. I put Jon's nebulizer in his cabinet, and his suction machine in his closet. Keeping those on hand too, just in case.

    Now, Jonís room was opening up.

    Cleaning Jonís mattress cover was the most difficult for me. I tearfully and gently gathered the flakes of his skin from his lymphedema legs and wiped down the mattress cover. Then, I removed the wrist restraints, dangling on both sides of his bed. I wrapped them up and tossed them in Jonís Lakersí trash can, remembering how we apologized to Jon every single time we put them on him.

    I needed to take a few breaks to rest. Then, it was time for me to finish Jonathanís room.

    On the TV tray, which held his nebulizer and assorted wound care products (convenient access), I placed Jonís collection of football and baseball bobbleheads. Some were gifts from John, others from Jim and me.

    On his corner table, where his suction machine and other immediate items were placed, I left his Kobe Bryant towel on the top, placed his Kobe bobble head, a LED candle and an LED Angel.

    Then, I brought in the Elton John swag bag, which Johnís sister gave to John to give to Jonathan. Unfortunately, she gave it to John the day before Jon passed. John brought it over Saturday morning, before we went to the mortuary. Itís been sitting in the living room since then.

    Everything is gold with a huge E on it. A luggage tag, pen and pencil set, a white book for autographs, a key chain. I left them all in their boxes, tilted slightly, and placed them on the corner table.

    On top of his bed, I placed his Lakersí comforter, which he had never used, because he got overheated. The Elton lanyard and the Elton VIP pass, I placed at the head of Jonathanís bed, under which is the second of Jimís wedges.

    I sorted through the photos Iíd found of Jonathan and Michael through the years, and I selected our favorites. Those photos are now on Jonís TV, as they slid perfectly into the bottom and top of the TV frame.

    And the photo of Jonathan playing piano as a little boy is now part of the Elton collection on his corner table.

    The empty Elton swag bag swings from the boom of his lift to greet all guests. It is next to the mylar balloon, which is still somewhat inflated (a gift from John for Jonís 49th birthday last November).

    Once Jim saw Jonís room, he told me that it is wonderful, and he also said, ďItís amazing how open it is now, without all of the stuff we had out for his care. I didnít realize until now just how much stuff there was.Ē

    Iím anxious to show Jonís room to Nancy tomorrow, when she visits to draw Jimís blood. I hope that it will bring her comfort, as I know that she misses him terribly too.

    We had a great visit with John yesterday, and heís on board to help remove the cabinets and countertop in the office closet for the termite extermination.

    When I brought Jonís heart stone memorial to show John, he was visibly moved and said ďThat is perfect.Ē I invited him into Michaelís room to see Jonís and Michaelís ďheavenĒ tiles. I pointed out the roses and angels in the garden. John walked into the backyard by himself, stood in front of Jonís garden, reading his garden stake, and I know that he was thinking about his buddy.

    Iím sure that when we see John next week, he will be very pleased with the transformation of Jonís room.

    Somehow, I had the emotional and physical strength to do this today, and I do feel better. I was stuck in the groove of Jonís loss and not honoring his life. As I told Jim, ďJonathan deserves a clean, uncluttered room, with everything about him on display. And we deserve this too.Ē

    I feel different now, when I walk into Jonathanís room. Jonís room now reflects who he is, not his various conditions/illnesses, and, especially, not his death.

    Thank you all for your love, prayers, continuing support and healing, positive energy. We love you, and we pray for you and your loved ones, and we give thanks for the blessing you are in our lives.

    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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  17. #19
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    I love the photo of the boys as kids! SO CUTE!!!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  19. #20
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    ((((((Hugs to All)))))) ~

    funnylegs4 ~ Thank you! Of course, I'm partial, but they were adorable.

    Today, while Nancy was washing her hands in the kitchen, I pointed out the solar roses and angels and explained about our plans for Jon's garden. Then, I took her into Michael's room to see the tiles and the stone heart. As I expected, she thinks they are perfect.

    I took her hand, and we walked to the entrance of Jon's bedroom. We stopped to look at the Elton swag bag, as I explained how it came to be. I turned her around to see Jon's room, and she gasped. She began crying, and then so did I, so we hugged.

    I gave her "The Tour" starting with the photos on Jon's TV screen. I explained each photo, and she was just over the moon to see Jon as a little boy and young adult.

    His bed, naturally, grabbed her heart. "Jonathan is an Elton VIP," I said, as I gestured toward the lanyard and pass.

    "Oh Rose," Nancy sniffed, "Jon sure was a VIP to all of us."

    Nancy had the unfortunate task of informing all of the nurses, Jon's PT, our supplies friend, who used to do all he could for us, that Jon had passed. The nurses had an awards luncheon a few days after Jon's passing, so she took that as her opportunity. The next time she saw us, Nancy told us that everyone cried, and they all hugged each other remembering what a treasure he is. Jonathan is so very loved by all of these wonderful people, and he adored all of them.

    Nancy loved the bobble head display, and when we reached the Elton table, she was impressed with how pretty and well made all of the items are. Elton has very high standards, and he lives opulently, so he wouldn't have cheap stuff in his swag bags. Even the straps on the bag are leather.

    When we returned to Jim in the living room, Nancy said, "You feel better now, don't you?"

    "Absolutely. I'm in pain from the work, but that is nothing compared to the relief I feel in my soul. I was avoiding his room, because it reminded me of that morning, and because he wasn't there. Now, he is there. And he's in Michael's room, and he has a garden in the making."

    I needed to do this for Jonathan and for me and Jim, and Nancy and John. Nancy is like our sister, while John is like our son. They knew Jon better than anyone else, aside from Jim and me. They provided Jon with intimate care, intense care, and they both love him and miss him deeply. Their reverence in seeing the memorials, really taking time to feel and absorb their feelings, and their joy that we are able to move forward at this point is all we need to know about their love for Jon and us.

    I'm looking forward to John's response, when he sees Jon's room.

    This a vital part of the healing process, to be able to reconnect with our loved one, and feel his presence, while accepting his physical absence.

    After Nancy left today, I said to Jim that two days ago, I hadn't planned on doing this to Jonathan's room. It was just that moment yesterday, when I looked around and felt so terribly sad. I thought, "I cannot leave your room this way, Jonathan. This is wrong. I'm not honoring you like this. You deserve so much more."

    Jim's observed, "You've been in shock, Rose. And life here with me has been really challenging for you. It's a lot of work, you never get a break, and you just didn't have the energy, time or strength to clean up his room. Plus, you weren't ready to do that. I understood. We all understood."

    A part of me wants to take photos of Michael's and Jon's rooms and gardens to send to their doctors, the police officers and CSI investigators, and the paramedics, who worked so diligently and valiantly to return Jonathan to our loving arms. I'd like for them to see Jon's life in the photos on his TV screen, and see the changes we've made to honor him and his brother.

    I feel sure by their kind responses to me, as I grieved and wailed, that they felt sorry for Jim and me. One officer told Jim to keep an eye on me, and a paramedic told him to remind me that this was not my fault. The two officers stood at attention by my side, as Jonathan was placed into the mortuary van, and they waited for me to walk back into our home. One officer said gently, "Go back inside, Rose. It's cold out here."

    I want them to know that we survived our loss of Jonathan this far, that Jim is much better, and that our sons are everywhere in our home.

    This would be a thank you to all of them for respecting Jonathan's dignity and being compassionate toward us in our sorrow. And a thank you to all of the paramedics, who have come to our rescue so many times with Michael and Jonathan. In 42 years, that's an abundant number of times.

    I'm still pondering this, as to whether it is appropriate.

    Apparently, I'm going through a new phase in my grief journey now, and I thank you all so much for walking beside me and Jim. We love you and hold you and your loved ones in our prayers and send you positive, healing energy.

    Jonathan also loved Bruce Springsteen, and I found this wonderful version of "This Little Light of Mine," which I am sure is a message from Jonathan and Michael:

    https://www.youtube.com/watch?v=R0qAYq1GVec

    Let Your Light Shine!

    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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