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Thread: Jonathan Received His Wings Today

  1. #81

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    Hello Rose,

    I've been following your journey of grieving Jon's death and I have nothing to add to the wonderful advice of all who have posted here.

    I was reading the above post and I thought of all the supplies you have. I looked up the World Health Organization (WHO) and came across a list of 26 organizations who take supplies and use them in underdeveloped countries and for people who can't afford supplies. I don't know the areas of these organizations, but whenever you are ready to deal with this issue, I hope this helps.

    https://www.who.int/medical_devices/...roles.pdf?ua=1

    Your family is in my prayers....
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  3. #82
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    Dear Rose,
    And whenever you are ready just let me know and I will come and help. (I am writing here because I think you look here, to CN, for support before you look at emails).
    Dearest Rose, my heart breaks for you and the terrible grief that you are trying to manage... trying to feel, or trying not to. The hurricane of sadness, of loss and emptiness runs through all your words. Being in a robotic state is the only way to survive right now. Knowing that what you are going through is 'normal' with the loss of a child I don't think helps because there is nothing normal about losing a child. We are supposed to die before our children. And you likely have PTSD from the day that Jon passed away. It was terribly traumatic and those images will always be with you, but I hope the horror begins to fade slowly.
    As always, my whole family is thinking of you and praying for some healing in your family. Love,
    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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  5. #83
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    ((((((Hugs to All)))))) ~

    Moderator #7 ~

    Thank you so much for providing me with the WHO resources. We donated all of Michael's supplies to a community in Mexico, sponsored by our dear friends. Sadly, he passed away last year, and I don't know whether the family is continuing to support this community.

    We donated our first van to a woman, who had no transportation. Her full time caregiver brought her to our home, they tried out the van, and gave us $1. Jim used to see them driving around, honking at him, waving, with thumbs up.

    There are so many people in need right in our own backyard, and local donations would be easier for me.

    I'm not in that place now, of course. It was several months after Michael passed, when we made our donations. And now, 16 years later, we have so much more to donate.

    Thank you for your prayers, and thank you for everything you do for BrainTalk and keeping our community safe and functioning.

    Donna ~

    One reason why I post here first is because I'm using web mail, and it sucks. I can copy my post here and paste it into an email, much easier than I can compose and send in web mail.

    You are so right that my PTSD is associated with the trauma of Jonathan's passing. We were expecting Michael to pass, so we were prepared. Jonathan's passing is still a shock to us. We are in disbelief at times, and other times, it is all too real.

    Michael was in a spacious private room on the 5th floor of the hospital, with a view of the sunset. We were with him, holding him, loving him, guiding him to the light, when he took his final breath.

    Jonathan was on the hard floor in Michael's room, with paramedics pumping his chest, surrounded by Christmas decorations, well before sunrise. We were not with Jonathan, when he made his transition, holding him, loving him, guiding him to the light, when he took his final breath. He was alone.

    Chaplain Rosa was at our side after Michael passed, comforting, consoling, and counseling us. Jonathan had firefighters, paramedics, police officers, CSI officers, and mortuary attendants. I had to tell our life story to the Coroner over the phone. While they were all as kind as they could be, and so very sorry for us, they weren't Chaplain Rosa.

    For 14 months after Michael passed, Jon's health was fairly good. Then, in August 2004, his sigmoid colon twisted and became gangrenous, and we were back at the hospital, in all of the familiar places, where we'd been with Michael. Same doctors, rooms adjacent to Michael's rooms. This is when Jon's overall status began to decline.

    At least we had 14 months of health with Jon. Now, immediately after Jonathan's passing, I'm am tending full time to Jim. In fact, 5 days after Jonathan passed, we were in ER and the hospital for 40 hours. And this was after Jim had just been released from the hospital on Tuesday, the night Jonathan became ill.

    Of course, we're 16 years older now, and we're weaker and more fragile than we were then. So many factors contributing to my depression and struggle to cope with the trauma of Jonathan's passing.

    Losing a child is the most unnatural occurrence in humankind. As you said, we aren't supposed to outlive our children, according to the circle of life. We also were in the impossible situation of not wanting to die before Jonathan, because his care would diminish rapidly, and he would have grieved for us. Grappling with this dichotomy has always been difficult for us.

    Now here we are. We no longer have that dichotomy.

    When I told Nancy today that it's only been 32 days, since Jonathan passed, she seemed surprised. I guess it felt longer to her too. But to me it remains as vivid and painful as if it happened today.

    I just have to go through the process. It is arduous, as I knew it would be. But I wasn't anticipating how arduous it is.

    Time. It is the only balm. And yet, it is also a reminder of the length of separation and an extension of the unbearable longing.

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

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  7. #84
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    I'm so sorry this is so painful. You said you were in close proximity to Jon the night he died and I do not believe Jon felt alone at all. He knew you and Jim were there. He knew he was loved. More prayers always.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  9. #85
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    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    Thank you so much.

    Jonathan definitely knew and knows how much he is loved. Look at his eyes, his smile, his angelic expression. Jonathan is adored by many people, who are devastated by his passing.

    I've watched people fall in love with Jonathan and Michael in an instant. When Jim has been hospitalized this year, he's asked Respiratory Therapists serving him if they ever worked in ICU and know Jon and Michael. Several of them said they did, of course, and could never forget our beautiful boys.

    Nurses flocked to them, and the hospital aides, who turned and bathed them, just cared for them with love in their hearts. I'm not exaggerating. I've seen tears in ICU doctor's eyes, and I've watched them patrol the halls, stopping to look in on our boys.

    And every exit from the hospital to home was celebrated by nurses, doctors, staff, as they applauded and cheered our departure. And every return was greeted with compassion and a solemn dedication to returning them to health. Throughout our health care community, many have expressed their sorrow in Jon's passing.

    In fact, at the last home health nurse's meeting, Nancy shared with all of the nurses and our Physical Therapist and former supply guru that Jon had passed. She said everyone is just sad and yet uplifted having been part of Jonathan's journey. They all understand how difficult this is for Jim and me. We can't give enough thanks for all of these wonderful, loving, dear friends, who have committed to caring for Jonathan for so many years. And loving our family, and becoming part of our family.

    Jim and I can't know now why Jonathan passed as he did, but we are still truly sorrowful that we were not at his side, guiding him to the Light, and showering him with our Love and anointing him with our tears. We feel deprived of those last moments with Jonathan. We feel deprived of being beside him during his transition. It is what we wanted most for him, should he pass before us. And he did, but we weren't there with him.

    The essence of our love surrounds Jonathan always, but we weren't physically there for him as he passed into God's Arms. We feel this deeply as a loss.

    More reminders today ~

    A notice from the bank that it reimbursed Social Security for Jonathan's automatic SSI payment at the beginning of May.

    A renewal disabled parking placard from the DMV for Jonathan.

    This just keeps making it more painful and difficult for me, but I have to manage all of it and maintain my balance. I am numb. I really am numb.

    Things will keep changing. I will keep putting one foot in front of the other and doing what needs to be done to care for Jim. I know that our Angels are watching over us and that we will be reunited. This gives me the strength I need to carry on.

    Thank you all for loving and supporting us, for your prayers and positive, healing energy. We are truly grateful 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. #86
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    My apologizes. I thought you had been sleeping in Jon's room when he passed. My bad. Prayers always for you and Jim and for Jim's health. I'm so glad Jon is so loved by all!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  13. #87
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    Dear Rose,
    I think the numbness is a self-protective response and also one that comes from absolute necessity. Sometimes numbness can become a habit (I speak from experience) and this is hard to break. I hope that doesn't happen to you, Rose. I hope you will have the time and opportunity to grieve the terrible loss of Jonathan. One thing I worry about too (about you AND me) is 'who are we if we are not caring from someone'? I have often wondered this, actually every time we thought we were going to lose Nick (including his most recent crisis). I feel like I will be completely adrift. These are all the questions we ask when we have spent a lifetime caring. Sigh. I have no answers, only love and prayers. xoxox Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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  15. #88
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    ((((((Hugs to All))))))~

    funnylegs4 ~

    You are not mistaken. I was sleeping on the chairbed in Jonathanís room, when he passed. Jim was sleeping in his futon bed in the living room.

    When I say that we were not with him during his transition, I mean that we were not awake, beside him, holding him, loving him, talking to him, comforting him. We were able to do all of those things for Michael, but Jonathan passed without us being physically present for him at the time.

    Being there for Jonathan in that capacity was, and always will be, supremely important to Jim and me. We feel deprived of those last moments with him.

    No need to apologize at all. Thank you, as always, for your prayers.

    Donna ~

    Oh, yes, dear friend, how many times have we prepared to lose our treasures? I call this pre-grieving. Iíve been doing it for 49 years with Jonathan and Michael.

    Foolishly, I thought that because I spent all these years preparing and pre-grieving that Iíd be able to handle their losses in a less painful way.

    I testify now: I was so very wrong.

    Absolutely nothing can prepare parents for the pain, anguish, sorrow, shock, and life long grief journey, after their child passes. Nothing else compares. The vast majority, if not all, of bereaved parents will agree with me. We all know grief, as weíve lost loved ones through the years. Parental grief is all of the rest of the grief we know times a million.

    All of those things I imagined for Jonathan in my pre-grieving for him, did not happen. I imagined a beautiful celebration of his life, as we had for Michael. I donít know when, or if, that will happen. I imagined being with Jonathan, cradling him in my arms as he took Michaelís hand. Nothing about Jonathanís passing is even slightly comforting to me. But I am comforted that he is with Michael, and they are free and in Godís Arms.

    As you mentioned, Donna, the ďwho am I if not a caregiver?Ē hits me hard now. After Michael passed, I cried, because he no longer needed me. What a blessing for Michael! But, I didnít know how to let go of 32 years of caring for him.

    Nearly a half century of caring for Jonathan, and it is even more intense.

    But after Michael passed, Jonís needs increased, and my empty hands were filled with his care. After Jonathanís passing, my hands are filled with Jimís care.

    I see the pattern. I get it. That is what keeps propelling me forward. There will be time for grieving, when the last race is run.

    Thank you for your love and prayers, Donna.

    This sustains us, as you all know, through these challenging times. We are so grateful to all of you for holding us close in your hearts and prayers. 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. #89
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    Rose, your words ring so true for me. For years I have visualized Nick's funeral - I have thought about how I would feel (but that was so hard to imagine), what I would wear (I would want to be so dignified for him), who would be there (so many who love(d) him), who would make a video of his life? How could we ever show what an impact he had on us and so many people? How could we ever demonstrate how loved he is (was)? But truly, I do not have a clue how any of these elements will play out when Nick dies, especially how I will feel. One thing I do know is that it is getting harder to go through his crises, not easier. I think it's our age - I was exhausted and distraught after his earlier crises, but Jim and I both said this most recent ICU admission and surgeries knocked us right down .. and it was hard to get up. It all feels so random and unpredictable (because it IS). All we can do is love each other and pray, right? xoxox Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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  19. #90
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    ((((((Donna)))))) ~

    Our age and the ages of our children, and the number of crises we've been through are definitely contributing factors to how well we cope now. No one is as resilient in their 60s+ as they were in their 40s. Well, perhaps Cher, Barbra Streisand, Jane Fonda ... okay, they look fantastic thanks to plastic surgery, but internally, they are still "elderly." They also have "people," who do things for them. We don't have "people."

    In my pre-grieving, I tried to imagine how I would feel after losing Michael and Jonathan. But I couldn't imagine that feeling, because they were still here with me. We may think we know what awaits us, but as I said, we're wrong.

    As a writer, I can use words like devastated, heart broken, sorrow ... but they don't even begin to scratch the surface in describing the pain I feel from losing my Precious Angels. Or, what I experience every time I enter Michael's or Jonathan's rooms. Or think about all of the things I have to do to finalize Jonathan's passing, returning equipment, finishing invoices, throwing out seizure meds, cleaning Jon's room, having a celebration for him, etc.

    Words simply cannot convey the pain of child loss, which is one reason why it is different than any other loss.

    After awhile, friends and family move on with their lives, as they should, of course. But, we are left with our pain, which doesn't change for a very long time, if ever. We just learn to live with it, which takes years. Sometimes others are impatient with us, and think we should be getting over it. That always comes from a place of not wanting to watch us continue to suffer, and not knowing what it's like to be a bereaved parent, thankfully.

    I'm still counting the number of days since Jonathan passed. For Michael, I am counting the number of days until his 16th Angelversary.

    Parental grieving becomes much more difficult as time marches on, as opposed to less difficult with the passage of time. Eventually, time does allow us to refocus and move forward, but again, that takes years.

    When I was seeking support with other grieving parents, I met hundreds of parents on line, who all agreed in the pattern we followed after we lost our children. It didn't matter how our child passed, the age of our child, or any other circumstances. Losing our child was the greatest trauma we could ever envision happening to us.

    The shock and stress of losing your child throws your entire system into chaos. A majority of parents stated that they had serious medical issues after their children passed. Our bodies, minds, and spirits are utterly trampled, and our immune systems shut down. I got a "cold," after 40+ years of not having one. Thankfully that was it. But other parents report diagnoses for cancer, MS, RA, rare disorders, heart attacks.

    That is the magnitude of parental loss, which defies definition. This is why I'm numb now, and why everything is a gigantic stressor for me.

    I was not prepared to lose Jonathan. His loss was traumatic in every respect. I still see the paramedics working on Jonathan in Michael's room, the faces of the young police officers and them standing at attention as the mortuary attendants placed Jonathan in the van. I cannot move anywhere, without seeing Jonathan, feeling him, missing him, crying for him, but holding back my tears, because I have to be strong.

    As I was making Jim's tea this afternoon, I glanced at the beautiful fridge magnet a dear friend made in Jonathan's honor. A poem next to his photograph that he will never be forgotten. I softly sobbed, and then the kettle clicked, and I was back to reality of serving Jim.

    A couple of nights ago, Jim slept through dinner, and I was feeling the weight of stress. I couldn't get comfortable in Jonathan's recliner, so I went into his room for the first time since his passing and laid on his chairbed. I talked with Jonathan, and I wept until I fell asleep for awhile. In some ways, it felt impossible and so painful, while in other ways, I felt comforted that Jonathan understood my sorrow.

    Jonathan and Michael know how ill their dad is, and they know how hard I'm working to take care of him. I'm positive that they see more than we do, know more than we do, and always have. A friend once suggested that they had a foot on both sides. We know that Jonathan mentioned Michael to us many times every day, and he frequently asked to watch our home videos. So often, we knew that Jonathan was hugging us for Michael, conveying his energy to us.

    Reunited in God's Arms, safe, free, and watching over us. I give abundant thanks for this blessing for Jonathan and Michael.

    Still, words cannot describe how much I miss them.

    Donna, you are so right. All we can do is love each other and pray. Pray for strength to face whatever may come our way, for comfort and peace in our times of sorrow, for moments of joy and rest, and for each other.

    Thank you for your love and prayers for us, as we return them for you and your loved ones, and for all of our friends here.

    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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