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Thread: Jonathan Received His Wings Today

  1. #51
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Default Jonathan Is Home

    Screen Shot 2019-04-30 at 4.40.01 PM.jpg


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

    When I opened the front door and saw John standing there holding Jonathan’s box containing his urn and ashes, John said, “Your boy is home!”

    John continued, “Jon rode in the front seat, where I know he hasn’t been for many years. I buckled him in and held my arm across him. I cranked up the tunes, and we rocked our way here. We finally got to do that.”

    “I know Jonathan loved every second. Thank you so much.”

    This morning, I cleared Christmas off of the Warrior Urn table and created space for Jon’s urn. John placed Jon’s urn, and then he admired the urns and said, “I see what you mean. They’re the same but different, and they each suit them. They look great together.”

    I burst into tears, so John went out to check on Jim. I heard him say, “I just want to give Rose some time alone.” Later, John came into the kitchen and called to me, “Rose, are you okay, sweetie?” I nodded “yes,” and he said he is right there for me, if I need him.

    I returned to the living room to chat with John and Jim. After a long, dreary day of drizzling rain, grey clouds and cool temperatures, the sun came out at that moment.

    “The sun is coming out! Jonathan is home!” I cried.

    In unison, John and Jim exclaimed, “Wow!”

    At Michael’s Celebration of Life service, we played “Here Comes the Sun,” by George Harrison. Michael loved George’s music, and he had to be out of the sun in his later years due to light sensitivity.

    As John was leaving, he repeatedly told me that he’d be around until Thursday afternoon, so anything we need, he’s available for us. John is, in every way, a son to us and a brother to Jonathan and Michael. His heart is so full of love and caring. He is such a blessing. He even emptied the heavy kitchen trash bag for me. Tremendous blessing.

    John reminded me to text him with our Derby horse choices, when he's in Las Vegas this weekend. I replied, “We’re going to pick a horse for Jon and a horse for Mikie.”

    “Great! I’ll place a bet to win on both!”

    A description of the Urn Table:

    The photos in the background were used at Michael’s service, and will be used at all of our services eventually.

    On the left, Michael, me, Jon at the Knights of Columbus fair in 1992, just after we’d met Jim, but before Jim and I turned our friendship into a life long love commitment. Jim was not present with us that day. We had a fantastic day. No seizures, happy, alert, going on rides, eating our lunch in the shade, laughing, dancing.

    On the right, Jon, Jim, and Michael at the Zion National Park lodge in 1993, our only vacation. We had just hiked with the boys in their chairs up a steep grade. The tourists coming down from the summit told us to turn around, as it would be far too difficult for us to maneuver the rest of the hike. We agreed, as it was already very difficult for us.

    We went to the gift store, where I found a beautiful Native American wedding vase. Jim and I used it in our wedding in 1994.

    Then we took a rest enjoying the awesome nature around us, just as a light rain started. I quickly snapped the photo, and we headed back to our van for more traveling. It was a marvelous, incredible day. No seizures, eating well, having so much fun.

    On the table to the left, a figurine given to us by Dented Angel, after Michael passed. Two brothers, one an angel, watching over his brother.

    In the center, a Willow Tree figurine, Angel’s Embrace. On the right another Willow Tree figurine, Angel of Light. I saved the gold letters from Michael’s wreath from Jon at his service: Beloved Brother. They are leaning against the figurines.

    Front left, Willow Tree figurine, The Sign for Love. In the middle, another one with two brothers, “Brothers: Forging a bond that lasts a lifetime.” Jon has the same figurine in his room.

    In front of that is a small Raku blessing bowl. Of course, teddy bears, and a heart shaped votive.

    Together forever. Here, There, and Everywhere.

    Meanwhile …

    It would seem that I may have a cold. Clear nasal drainage and into my throat. My head is swimming. It could be a sinus problem, though I’ve never had one. And I haven’t had a cold in over 40 years. Seriously.

    It’s weird, as I’d been in the ER, hospital, nursing home with Jim, ambulances, cars with John, his daughter, and his wife as drivers. That was 2 weeks ago. I haven’t been exposed to anyone recently.

    Initially, I thought it was being around Jim’s breathing treatments, or from crying as much as I have lately.

    Jim says, “You’re worn out.” I am. I am worn down too. Run down. Overextended. Super mega stressed. I have plenty of things going on to reduce my resistance.

    My main concern is exposing Jim to whatever this is. He’s already been exposed, before I had symptoms. And we’re in constant contact. I wear gloves, of course. But I haven’t been wearing a mask. I will now.

    Just one more fear, one more worry, one more stress for me. I am taking vitamins and CBD caps. I’m trying to rest when I can.

    Thank you all for your love, prayers, and enduring friendship. We love you and pray for you and your loved ones everyday.

    Love & Light,



    Rose
    Last edited by Earth Mother 2 Angels; 04-30-2019 at 05:22 PM.
    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. #52
    Distinguished Community Member SuzE-Q's Avatar
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    Beautiful.

    I'm so glad you have John for assistance and support. You take care of you now, Rose. It's important.
    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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  5. #53
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    Default The Stress Rash

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

    This morning, when I looked in the mirror and saw my flaming scarlet face, neck and torso, I knew what is wrong with me. This is my ďstress rash.Ē

    The first time I had this rash was a few days after 9/11. For several days, I had to lay down in the afternoon to rest. That horror, combined with Jimís sister and partner leaving only a couple days earlier after a 2 week vacation with us, raised my stress level to the maximum.

    Thereafter, I could count on the rash appearing after every major stressful situation. Every time Michael or Jonathan were hospitalized. Every time the System messed with their programs, services, supplies. After the earthquake that wrecked our home. After Jimís RA flare in 2015. After Jimís cancer diagnosis and several times since then.

    Typically, I experience intestinal distress a day or two prior to the rash. This time, I experienced nasal drainage, a weeping of fluids, as those, which stream down my cheeks daily. No sneezing, no sore throat, no aches and pains, other than the usual ones I have. Just congestion.

    I wondered whether this is from holding it all in for too long. In the 19 days since Jon passed, I havenít had time to grieve for him properly. My focus must be on Jim and keeping him safe and helping him to heal through whatever this nightmare is thatís happening to him now.

    When I cry or burst into tears in front of Jim, he feels so helpless. He watches me looking at Jonís photo on the coffee table, and he whispers, ďHoney, weíre thinking about our boys.Ē

    Today, Jim asked me if I needed to talk to someone to help me work through my grief. I reminded him that every day, I talk to lots of people, who love and pray for us. I have a great support network in all of you. I canít thank you enough, because I donít know where I would be now without you.

    As we were watching the Liverpool/Barcelona soccer game today (we root for Liverpool for Nick), an ad came on for the upcoming Elton John biopic, ďRocketman.Ē The tears have a will of their own and accumulate at any moment, then I sob.

    ďJon would have loved having this movie!Ē

    Once again, Jim felt helpless. Iím ďavoidingĒ him, in case I do have an infection. Even with a mask, I donít want to get too near him, to cuddle, hug or kiss him. I canít describe how painful that is for us, especially now. We have always been very affectionate, holding hands, kissing, hugging, dancing, just expressing our love with touch/contact.

    Now, when we need it the most, we have to be apart. I want to be over whatever this is, so that we can be close again.

    The stress rash was bound to happen at some point. I was expecting it. It just arrived in a different form this time, which tells me that Iím at the peak of stress.

    I am trying to rest. I am hydrating. I am praying a lot. I am allowing myself to feel my emotions, when I canít stop them. Unfortunately, I am rather skilled at pushing tragedy aside so I can carry on with what needs to be done. My body then pays for it.

    In my research on parental grieving, and polling grieving parents on a parental grief forum, I leaned that a large percentage of grieving parents have major health issues after their children pass. That is how powerful the pain is for a grieving parent. Heart attacks, flu/cold, cancer, severe depression, neurological disorders.

    So, I do have a good grasp of this phenomenon. Why should I be an exception to it?

    Itís as though grieving is a luxury for me. I canít take my eyes off of Jimís needs and the immediacy of every moment long enough to fully feel my grief over losing Jonathan.

    I donít need a therapist or physician to tell me what is wrong with me. I know exactly what is wrong with me, and what is wrong with everything weíve been going through these past few months.

    We canít wave a magic wand to make it all disappear or turn out to be a dream or nightmare. This is reality. So, we have to suck it up, and keep moving forward.

    With your help, I do. Thank you all so very much. 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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  7. #54
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    Rose, is there anything you can do for the rash? Anything you can put on it? Or rub on it? Anything that will help it go away a little quicker or does it just have to run it's course?

    Thinking of you and Jim at this time. Wish you could be physically closer.
    Virginia

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  9. #55
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    Oh Rose, your words "It is as though grieving is a luxury for me." Those words are so true but so much at the heart of your situation right now. And yet grieving is as natural and necessary as breathing and eating. You are grieving the very best way you can, when you can. I understand the rash - it's so funny, I get those too - but on my torso, my back and my arms. I get it when I am very run down and fighting off some bug or other - usually I am very healthy, like you. But when I'm stressed then I get sick or that telltale rash. You are the only other person i know who gets it.

    Nick came with me to the hospital yesterday for the surgeon's appointment (I wrote to you about in an email) and he was fine. He hurried home to watch the game and was really disappointed that L'pool lost. His nurse freaked out when he got back that the gauze pad around his g-tube was absolutely soaked in blood. They called the head nurse and then me - we think he just got jiggled in the van or walking up to the hospital and his tube came into contact with his w/c tray and knocked it a bit. Maybe he had a granuloma inside his stoma that burst. Anyway, I wasn't worried because it stopped and it's been fine since. I only worry when I see coffee grounds in or around his stoma.

    Rose, I hope that Jon and Micheal's urn table of love and memory is giving you solace right now - there is so much love right there. And it is good to talk about your beloved sons and remember the best days (there are so many). I love you,
    Donna xox
    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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  11. #56
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    SuzE-Q ~

    Unfortunately, there isn't much time for me to take care of myself. I'm doing the basics of eating, hydrating, taking brief rest periods, and trying to sleep when I can. Jim's needs keep me pretty busy.

    Today, I ordered groceries from Instacart. I'm so grateful that I don't have to go to the store anymore. Just putting the stuff away is tiring for me now. I just gathered our house trash and filled our bins, then took them to the street for tomorrow's pick up. The bins are heavy, even on rollers, and that wore me out a bit.

    So, I do my best to take care of me. I know that if I don't, Jim will have to have someone else care for him. But, we'll hire a caregiver, before he ever goes into another facility.

    Thank you so much for your continuing support, love and prayers for us.

    Virginia ~

    The rash has to run its course. I have lotions to put on it to soothe it, but only time takes it away. I'll wake up in a day or two (I hope), and it will be gone.

    Meanwhile, the drainage seems to be decreasing, and I'm not producing any mucous indicating infection. Very little mucous in fact, mostly just fluid.

    While the intestinal distress isn't any fun, I prefer it to this "cold" thing. At least I know that my intestinal issues aren't contagious. And I recognize the intestinal issues as a precursor to the rash. So many times I've told Jim that my intestines were out of kilter, and he and I knew a rash would be next.

    Thank you for keeping us in your thoughts. Jim asked today if I wanted to cuddle next to him on his bed. I had to remind him about my "cold" and that it isn't safe for us to be that close. So disappointing. He also forgets how difficult it is for me to get on and off of the futon.

    Donna ~

    Another friend told me today that she gets a stress rash too. How lucky are we? I hope this one goes away as quickly as the others have and takes this congestion with it.

    We were rooting for Liverpool and talking about Nick through the entire game. We felt disappointed on his behalf. Jim is a Man United fan, but he roots for Liverpool for Nick (and other British teams when they play internationally, like Arsenal today vs Valencia). Soccer is a yawn for me, but it makes Jim happy so I watch it with him and pretend to be somewhat interested.

    I'm so glad that Nick's bleeding stopped. Your thought about granuloma is spot on, I think. Jon's Gtube stoma was always perfect. Michael's stoma had granuloma, so we used diluted eucalyptus oil on a 2x2 pad around his stoma at bath time for 15 minutes. It worked so well. Jon had granuloma around his trache stoma. I treated that with salt water soaked 4x4 pads. That also worked.

    Memories

    Yes, there are so many wonderful memories with our boys. When they were young, and we lived in the Midwest, we took lots of vacations, traveling around the country. Every Christmas we drove back to California to be with our family.

    Back in California, as a single mom, I entertained our friends frequently, as it was easier to host than to take Jon and Michael to their homes. We had many parties, holiday gatherings, and birthday celebrations, which they thoroughly enjoyed.

    With Jim, we had lots of day trips around California, went to Las Vegas for a weekend, Laughlin NV twice, 2 weeks in Utah in 1993. Disneyland, the county fair,
    school outings, Boy Scout outings, Special Olympic competitions (Jon and Michael have trophies and medals). We had 3 favorite local restaurants, where we were treated like royalty. The server immediately brought extra napkins and empty glasses, knowing our protocol. We were always greeted warmly, and Jon and Michael were spoken to, never ignored.

    We cling to those memories, because they help to soften the years that followed, as they aged. For Michael, seizures just overtook him after 22 years of intractable seizures. For Jon, it was one hospitalization after another for 15 years. We are grateful that we were able to keep him out of the hospital for nearly 7 years.

    Thank you all so much for your love, prayers, thoughts, kindness, encouragement, support and friendship. We Love You. Our prayers are with you and your loved ones always.

    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. #57
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    Hi Rose,

    Cool that Jon got to ride shotgun in a way! So sorry about the rash! Stress rashes are actually super common and I say again to just let your emotions out or the rash will re appear again and again. I’m so glad your boys had such an active life!
    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. #58
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    Default Final Documents

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

    Today, three final documents for Jonathan arrived in the mail:

    Jonathanís Death Certificate
    Jonathanís Cremation Permit
    Regional Center Notice of Termination of My Vendor Contract

    Trying to describe how I feel right now is seemingly impossible. I know Jonís not physically with us, of course. But these three pieces of paper hold some concrete, undeniable reality for me that just sears my soul. It makes no sense, I realize, but I canít deny my feelings.

    CAUSE OF DEATH

    The immediate cause of death is listed as ďcardiopulmonary arrest.Ē This is the same caused listed on Michaelís certificate. Itís generic for ďheart and breathing stopped.Ē

    Secondary cause, which our PCP listed as lasting for months, is ďhypoxic respiratory failure.Ē

    Iím not certain about this cause, as itís never been mentioned to me by any ICU doctors or our PCP or GI. If this pertains to his lymphedema and being filled with fluid, then it makes sense to me.

    The third cause, lasting for ďyears,Ē is ďCerebral Palsy.Ē

    Jonathan and Michael were undiagnosed and were never diagnosed with CP. Physicians use CP as a generic term for neurological disabilities from birth.

    While we have no genetic documentation, as I gave up searching in the 1980s, every physician agrees that their condition was genetic. And they were seen at Ohio State by specialists from all over the world, who gathered for conferences and seminars. They always wanted to see Jon and Michael to study them.

    THE UNDERLYING CONDITION

    As the underlying condition, which may have contributed to his death, our doctor wrote: Developmentally Delayed.

    Iíve debated how I feel about this declaration.

    People donít die from being developmentally disabled, or having CP, or any neurological issue. People die from complications brought about by that neurological issue.

    Jon and Michael had G Tubes, because we couldnít find reliable dental care for them, and they couldnít chew or swallow properly from overgrown gums, thanks to Dilantin, which they took to control seizures.

    How was that related to their neurological condition? Dentists didnít want the liability of treating them. They were discriminated against by dentists and Medicaid, who didnít provide decent dental care for them.

    Dental health is vital to systemic health, so their bodies suffered with repeated pneumonia. Jon had surgery to remove all of his teeth to prevent infection. He was in ICU at the time for 45 days. I had to beg for that surgery, as I told the Infectious Disease doctor that we were wasting our time treating his pneumonia, if he went home with those infected teeth. He called an oral surgeon immediately.

    Jon had a colostomy, because his sigmoid colon was twisted and gangrenous. Why? He had chronic constipation, as did Michael, and many children with neurological conditions. Lack of mobility, poor motility, swallowing problems, structural problems, and tons of meds.

    Osteoporosis, again seizure meds, and lack of mobility. Lymphedema, ditto.

    Jonís enlarged prostate was likely the result of numerous catheterizations throughout his life, particularly in his 40s with so many hospitalizations.

    So, in a way, Jonathanís and Michaelís developmental disability was the foundation for every medical crisis they experienced. The accumulation of those medical crises led to their final illnesses and their passing.

    FIRSTS AND FINALS

    Grief is laden with firsts and finals. These documents are part of the finals.

    This will be my first Motherís Day without Jonathan here physically. And my 16th Motherís Day without Michael present. Michael coded in ER on Motherís Day in 2003, but he lived for 3 weeks thereafter. Motherís Day has been a difficult day for me for a long time. Now, even more difficult. Itís painful for me to see all the commercials and ads for Motherís Day. I dread it.

    Then, it will be Jimís first Fatherís Day without both of his sons. Then, time marches on, and more firsts will occur. Jonathanís 50th birthday in November. Thanksgiving, Christmas Ö

    I know what awaits. I just have to muster the strength to get through it.

    Thank you all so much for your love, prayers, and continuing support of us. 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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  17. #59
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    Hi Rose,

    I know you are in emotional pain so please, please excuse my venting here. The Cerebral Palsy diagnosis and “cause of death” REALLY TICKS ME OFF!!! Nobody and I mean NOBODY dies of Cerebral Palsy itself because the brain injury occurs near the time of birth. It is indeed possible to die of secondary complications of CP but not CP itself. If you die of CP you die at birth in a way similar to how a person dies of a stroke as an adult. SO WRONG. As you say Cerebral Palsy is NOT genetic! I recently spoke to a class of students and everyone of the 30 students thought CP was genetic and that I would pass it to my kids. https://cripvideoproductions.tumblr....019-screenings Yikes! Just no. I’m not a doctor by any means but I know Cerebral Palsy well. Jon’s symptoms are nothing like Cerebral Palsy. Jon’s symptoms are more similar to a muscular dystrophy kind of neurological problems. If doctors slap a Cerebral Palsy diagnosis on a person that easily I wonder how many people in the roughly 1 in 500 Cerebral Palsy births are actually misdiagnosis. That’s kind of alarming. :(

    The other causes related to heart and breathing make more sense. Again I’m not a doctor but I think he had an irregular heart beat and the heart just stopped. Jon likely felt nothing. He was most likely completely unconscious. No worries. I was curious as to the cause of death so thanks for sharing.

    Thanks again for your prayers for my friend in India! I couldn't even bare the thought of losing him so again I could only imagine your pain. Prayers to you always! The urn photo is beautiful.
    Last edited by funnylegs4; 05-03-2019 at 07:34 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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  19. #60

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    Dear Rose,

    The world of firsts sucks. We get through them but it’s hard. I don’t like the constant commercials either, so I just change the channel!

    Getting the death certificate was a punch in the gut because it’s so final. We had Mike cremated too. It was the best option for us. We had talked about beforehand.

    Keeping you and Jim in my thoughts and prayers.

    Marcie

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