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Thread: Jonathan Received His Wings Today

  1. #111
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    ((((((Hugs to All)))))) ~

    Virginia and funnylegs4 ~

    Yes, I was astonished when I was told that Jim would perish with a mask on any level lower than 5 liters. I immediately realized that Jonathan and Michael had intervened. I'm sure of it.

    Jim's appetite isn't waning. Tonight we're having boiled red and buttery yellow potatoes (I don't have the energy to deal with the steamer), sauteed curried fresh asparagus, cauliflower risotto (it's frozen), and a newly introduced Field Roast patty, which we're trying for the first time.

    Today, as Jim and I were watching the Dodgers' game on TV, we looked at Jonathan's picture on the coffee table. The photo was taken the day before Thanksgiving last year by John, after we moved Jon to his recliner so Jim and John could place Jon's new mattress on his bed.

    John came out to check on Jon, while Jim and I finished making Jon's bed. As always, John had his phone with him. John said to Jonathan, "Give me a big smile, buddy!"

    He took 2 photos and came back to us in Jon's room and said, "Look at these great photos I just took of Jon!" We were so pleased to see them, and we knew instantly that John had captured the very essence of our beautiful son.

    The day after Jonathan passed, when John arrived to take me to the mortuary, he gave us Jon's photo, in the perfect pewter frame with hearts and crystals.

    As we looked at Jonathan's picture this afternoon, Jim said, "That is LOVE, just pure LOVE."

    I teared up a little, as I recalled to Jim how much I miss Jonathan telling me that he loves me. For most of Jonathan's Earthly life, it went like this:

    "Mommy?"

    "Yes, Jon."

    "Mommy?"

    "Yes, my darling."

    "Mommy?"

    "Yes, my beautiful, handsome boy?"

    "I love you."

    Then it was all about hugging and kissing and telling Jonathan that I love him with all of my "beans." Whenever I said, "with all of my being," Jonathan replied, "beans."

    I miss his hugs and kisses, his laughter, his smile, dancing with him, singing with him. We had 5 Christmas songs we sang together every year. He sang the last word to every verse and chorus. I miss his air guitar. I miss hearing his DVD/Blu Ray holder dropping on the floor, and the side eye he gave us, when he dropped his hankie on the floor.

    I miss bathing and shaving him with organic products, and putting on a clean shirt, admiring how gorgeous he is, and hugging him to tell him he smelled delicious.

    I miss watching all of his movies and concerts with him. I miss reading to him and explaining things to him.

    I miss his giggles, when we tickled him. Or lifted up his top sheet and stuck our heads underneath it, like we were in a tent. He chuckled and enjoyed that silly thing so much. And so did we.

    We miss our beloved boys.

    We remember every detail, every happy and sad moment, all that they endured with such incredible determination and courage. And we miss them.

    As I've mentioned in previous posts, in the mid-90s, we took Jonathan and Michael to the ER, because they were both seizing. They were in beds across from each other and Jim and I were at their sides. The ER physician was very surprised to see two brothers with the same disorder. He realized that their level of care was extensive (and this was before their health declined considerably). He asked Jim and me, "Do you two have a life?"

    We answered in unison, "They ARE our life."

    Yesterday, as I was cleaning Jim's (and Jon's) bathroom, in a corner unseen until then, I discovered a bathroom cup with one of Jon's red trache plugs in it. I used the cups to disinfect his trache plugs with hydrogen peroxide. I took a moment to let the sadness wash over me. Then, I gently folded the cup and held it tightly and released it into the trash can.

    Today, I completed my IHSS time sheets for the end of February to mid April. Very painful.

    It seems that every day there is something "official" I have to do regarding Jonathan. Tomorrow, I will call the pharmacy to pick up Jon's cases of formula in the garage and his feeding pump. Then the supplier of his O2 to pick up his concentrator and tanks.

    It feels like this will never end.

    We thank you all for following us on our journey, for your love, prayers, support and friendship. We pray for you and your loved ones every day.

    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. #112
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    So glad Jim is eating well! Don't you think you should hold onto the O2 tanks for Jim???

    I love hearing about what you and Jon talked about! Jon was very smart and compassionate, that's obvious and I'm sure both boys will keep sending you ways to remind you of their love! Prayers to you always!
    Last edited by funnylegs4; 06-02-2019 at 06:12 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  5. #113
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    Rose, I too enjoyed hearing how you and Jon talked to one another and interacted with each other. There will and probably already has been so many other ways that have come to your mind in the way Jon let you know he loved you. After Michael's passing I am sure that the three of you became an even closer family. It reminded me that the way you and Jon acted with one another is just the way real loving families are with or without an illness. You have had so much sorrow, but never forget the wonderful blessings have been there also. A lot because of just who you are. I think you set the pace and the others have followed. You taught Michael and Jonathan to love unconditionally and when Jim came along he took his cue from the family that was already in place. I know Jim feels very blessed to have had this family in his life.

    I am so glad Jim is continuing to eat well.

    Blessings to both of you.
    Virginia

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  7. #114
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    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    I have to return Jonathan's O2 supplies, because they are rented, and Medi-Cal is paying for them. Same with Jonathan's feeding pump rental. I should have done this weeks ago, but I haven't been up to it or had the time to address and schedule the pick ups.

    Yes, I strongly feel that Jonathan and Michael are surrounding us with their energy to help us through this part of our journey. They are always near, and we feel their presence.

    Thank you so much for your prayers.

    Virginia ~

    Actually, Jonathan and Michael taught me unconditional love. I fell in love with them as soon as I learned I was pregnant. My first words to them upon their births, before I even saw or held them, were "I love you!" The instant Jonathan and Michael were placed in my arms, my life changed forever. The person I am is because of Jonathan and Michael.

    Because of Jonathan and Michael, I became an advocate for people with disabilities. Because of Jonathan and Michael, I was able to create precedents for those, who would be in our position someday. Because of Jonathan and Michael, I have been able to support parents of children with disabilities and grieving parents. Because of Jonathan and Michael, I met you! And all of the other wonderful people here on BrainTalk.

    Jim agrees with you that meeting us was the best day of his life. He regrets that we didn't meet sooner. He will also tell you that being Jonathan's and Michael's dad changed his life forever. Jonathan and Michael bring out the best in all of us.

    Thank you so much for your blessings. We send them right back to 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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  9. #115
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    ((((((Hugs to All)))))) ~

    Christmas is officially over as of today. I finally collected, wrapped and put away all of the Christmas decorations in Michael’s and Jonathan’s rooms. One globe is still in Jon’s room, because it is too heavy for me to lift. A job for John.

    Michael’s room is now clean, and all of the Spring/Summer linens have replaced the Christmas linens. No more clutter, as I had gathered all of the decorations onto Michael’s long credenza. Glitter and sparkle are now subtle tones of green leaves and light colors.

    It is 97 degrees here today, so it was definitely time to bring out the cooler colors. Most of all, I needed to do this for myself. Michael’s room is a scared space, and I had allowed it to get dusty and left it unattended for too long. It was just too painful to be in Michael’s room, remembering Jonathan laying on the rug.

    I was still careful to walk on the periphery of the rug, but I knew that cleaning and removing Christmas decorations would honor Jonathan and Michael.

    Today, I was anticipating the arrival of the delivery/pick up driver from the home health agency. Delivering Jim’s port supplies for tomorrow, and picking up Jon’s leftover cases of formula, spike sets, and his feeding pump. I waited, while Jim napped, for the 11:30-12:00 arrival, and at 12:20, I decided to check the front door to see if he’d delivered the port supplies but left without taking the formula/spiles/pump.

    I quietly went into the garage and opened the garage door (so as not to wake Jim), and there was the delivery person standing on our front walkway, looking in through the open shutters at Jim sleeping.

    How did I know that he’d be there at that moment?

    He was very kind, and as he was using our hand truck to take the formula to his car, I found the marker I use to label garage box contents, and wrote Jonathan’s name and “Pump” on the box to distinguish it from other boxes.

    Two significant steps forward on my grief journey today. None of this is easy, but I realize that the longer things remain as they were, the harder it will be for me to find peace and comfort.

    Letting go of everything from a trache plug to Jon’s cases of formula, with so much more to go. I can only handle this in small doses.

    Thank you all so much for continuing to support us with your love, prayers and friendship on this seemingly endless journey. 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.

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  11. #116
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    ((((((Hugs to All)))))) ~

    Today, I finally found the opportunity to ask Jim a question, which has caused me to wonder, since the day Jonathan passed.

    I didn't know how to phrase it correctly, but eventually, I said, "When I was in with Jonathan laying on the rug beside him, did any of the firefighters, paramedics, or the police officers say anything to you about me or consoling me in some way? Or did you ask them to say something to me?"

    Jim replied, "One of the officers said to me as the mortuary attendants were taking Jonathan outside, 'Keep a close eye on your wife, please. She is quite distraught.'"

    To the officer, Jim responded, "She will be all right. It will take a long time. But, we've been through this with Michael. We know how it is. I always have my eye on her."

    I suspect this is the same officer, who told me, "Go back into the house, Rose. It's cold out here," as I stood on the driveway watching the mortuary van drive up our street. He saw that I was waiting for it to vanish, before he said it to me.

    Then, I asked Jim whether he'd asked any of the paramedics to come into Michael's room to console me. Jim said that he didn't ask anyone to do that, because he knew I was inconsolable and needed to be with Jonathan.

    So, the paramedic, who came into Michael's room and told me that this could have happened to Jonathan, even if I had taken him to ER, did that on his own. It's quite possible that he had been to our home many times before on 911 calls for Jonathan. We're hard to forget.

    I was comforted to know that he wasn't prompted to say this to me. But, I also know that seeing Jonathan as they did, with all of his appliances and his contorted body, they realized that Jonathan had so many health issues, anyone of which could have caused his passing. They also saw all of the medical equipment, obviously being used for Jonathan, in his room.

    They also saw Jim, who at the time, was quite ill, and was clearly released from the hospital too soon. I was doing my best for Jim, but he was in a decline, which was obvious 5 days later, when he went back into the hospital after Jonathan passed.

    They must have looked at me and wondered how I could keep going.

    Tomorrow, it will be 60 days since Jonathan's passing. How have I kept going? Love, lots and lots of love. Prayers, abundant prayers, from everyone everywhere. Support, kindness, friendship, understanding, compassion ... I could go on ...

    Thank you all so much for keeping me going.

    I love you and pray for you and your loved ones, and that has also kept me going.

    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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  13. #117
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    It’s great that the paramedic took it upon himself to comfort you.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  15. #118
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    Default An Hour With John



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

    John stopped by for an hour visit today. We hadn’t seen him since Jim’s appointment with Dr. K. We used to see him at least twice a week, when he turned Jonathan. He said today that he wants to visit us at least once a week and that we should call him anytime for anything.

    As always, John wanted the full run down on Jim. He is so pleased with Jim’s improvements.

    We talked about the PET scan and brain MRI, and John asked Jim if he intends to have them. Jim said that he does, but he wants to be in better shape. Jim said that he easily feels claustrophobic, to the point where he can’t breathe. He worries about that affecting him during the tests, particularly when they take a long time.

    John seemed relieved that Jim was still willing to have the tests and said that he would transport Jim to/from.

    Then, John picked up the photo of Jonathan, which he gave us, before we went to the mortuary. “Pure sweetness,” I said.

    “Yes. I remember the times we had to ‘coax’ a smile from Jon. He was playing us, and I loved it. But, when I took this picture, he had this smile on his face before I got to him. He was so happy to be in his recliner, and I just grabbed my phone and started snapping away.” John is stoic, but I know he’s grieving for Jon.

    John asked me how I’m doing. “How is it for you when you go in his room? Do you ever just sit in there? Watch his TV?”

    I told John that it’s extremely painful for me to be in Jonathan’s room. I can barely touch the bed rails or pump on his bed. I haven’t cleaned his mattress, and the flakes from his lymphedema scarred legs are still on it. While I have thrown out some things, and the formula and O2 equipment are gone, so much is still the same.

    Sometimes I sit on his chair bed to fold laundry, because it gives me the space to sort and stack. But I do it quickly, because the entire time, I am reliving that morning, every single second of it. That is sheer torment.

    Occasionally, I pause to look at his towers of DVD/Blu Ray collection. I remember watching every movie and concert with him over and over, repeating the lines, singing the songs, talking with Jon about what we were seeing.

    I try not to linger, because it just hurts me to my core. I miss him so very much. I don’t even have words to describe the depth of my longing for him. I just want to walk into his room, see him in his bed, smiling at me with his hand held out, waiting for a kiss and hug.

    John said, “I can only imagine. I’m so sorry.”

    John brought in our 35 lb box of oranges from the porch to Michael’s room, where I have a basket into which I transfer them. These oranges are California grown and are the sweetest, juiciest oranges I’ve ever had. We give bags of them to every visitor, and Jim and I enjoy fresh squeezed orange juice every morning. No one leaves without a bag of oranges, and everyone raves about them.

    I asked John to take a moment to look around Michael’s room. “Christmas is gone. Spring/Summer is here.”

    “That must have been very hard for you, time consuming, and painful.” John said. “But it looks great. Fresh, clean, organized, and just right.”

    When I walked John to his car, he said, “I think about my Buddy every day, many times a day, Rose. I miss him.” He paused, because he doesn’t like to get emotional. “But, he and Michael are up there together having fun, running around, and chasing girls.”

    I chuckled. “No, John. The girls are chasing Jon and Michael. That’s how it was on Earth. I doubt that it’s changed up there.”

    Then, I shared with him about Michael’s girlfriend through the years, Julie, whose Mother was unable to care for her and lived in a foster home. I learned through their teacher, when they were about 19 years old, that they snuggled next to each other during rest time. The teacher told me, “They are definitely in love. They’ve been together for so many years, and I’m sure that Michael realizes that Julie isn’t getting the kind of care that he is. So, he holds her and loves her.”

    The girls in Jonathan’s school competed to push his wheelchair from class to class. “You pushed him yesterday. It’s my turn!”

    Of course, Jon could propel his own chair, but he was perfectly happy for the girls to do it for him. As teens and adults, there was a lot of innocent hugging between all of them, just filled with love for each other. Jon was always the Big Man On Campus.

    After I shared these stories, John grinned. “That makes total sense, and I can see it.”

    He promised that he’d text a photo of his wife, daughter and his daughter’s boyfriend at tonight’s Dodger’s game. It’s their first outing as a foursome, and the boyfriend is a Giants’ fan. They’re all nervous. John said, “I’ll go easy on the guy. I remember being his age. But I’ll be watching him to make sure he respects my daughter in every way.”

    With that, I gave him a bag of oranges and his Father’s Day card.

    Thank you all so much for your love, prayers, and continuing support of us on our journey. We love you and pray for you and your loved ones every day.

    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.

  16. #119
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    Oh, Rose - thank you for this update on John, you, Jim and everyone in your extended family. As always, your description of your conversations play like a movie in my head. I can so easily put myself in your place. I can't imagine your pain folding laundry in Jon's room. Sending love as always, Donna 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


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  18. #120
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    Rose, I can't remember if this has come up before but I was wondering if you keep a hard copy of all the writings that you have on here. It is a journal chronicling this journey that you and Jim are on. I hope you have copies of it all for posterity. Hopefully, BT and all of us will always be here, but just in case something does happen I think you might someday in the future want these writings.

    Glad there was a little time with John. I know you enjoy that, and he loves and enjoys catching up with you and Jim.
    Virginia

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