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Thread: Jonathan Received His Wings Today

  1. #91
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    Rose, I'm so sorry to see this. I've seen how much you love your sons, and how much care you gave them. And now you need to give your husband. Your loving care very likely extended their lives longer than they might have lived. Take whatever time you need to grieve, and carve out some time for yourself.





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  3. #92
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    ((((((Cat)))))) ~

    Thank you so much for your encouragement. concern and care for us. It's difficult to find time for myself, but I do have my morning walks, and I can vent here and be understood and nurtured. That helps me more than I can express.

    I am so grateful for your recovery, and I pray that you continue to improve.

    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. #93
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    Rose, I am so glad to hear that you are doing your morning walks. I remember you saying recently that you aren't able to walk as long or as far as you used to, but getting outside, breathing fresh air, looking at the sky - this is all natural healing. In fact, the Japanese call it 'forest bathing' and they have measured distinct health improvements from 'morning walks'. It feels good to be in nature. And I know that you run into friends and neighbours (including the furry kind) when you walk. This is good too.
    Today I bought flowers at the garden centre and Jim and I planted them. Tomatoes, herbs and lettuce as well as flowers in pots (geraniums and ivy). It looks really pretty. We had to get them in before the black flies come out - they are intolerable in the month of June.
    I send you my love - I pray that Jim is doing OK and holding his own with your loving care. xoxo Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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  7. #94
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    Default Letting Go And Holding It In

    ((((((Donna)))))) ~

    Geraniums and ivy are hearty plants. We have several geraniums started from my aunt's geraniums. When they get leggy, I cut them and just plant the stem in the pot. It's that easy to get them to grow. I'm sure that you'll have lovely fresh salads and many tasty meals with your veggie and herb garden.

    Last week, I spent a little time in our backyard trying to tidy up the plants. Yard work is the last thing on my to do list. I would love to plant succulents everywhere. Many of our neighbors are updating their front yards with succulents, rock, bark, and drought tolerant plants. Lots of them are doing this on their own, without landscapers, and they look very nice. Of course, we can't do that. But I'm hoping someday we can get estimates on finishing off our backyard in concrete. We have so many leaves and eucalyptus debris that it destroys the grass. Our eucalyptus is gigantic and needs to be trimmed way down.

    WALKING AND DOGS

    Since my sleeping habits have changed with Jonathan's passing, I am now walking earlier than I used to walk. I generally set Jim up with his fresh squeezed orange juice and his breathing treatment, then I take my walk. Not as many folks are out walking at 8 a.m. as were out after 9 a.m.

    On my way to the pharmacy for Jim's meds the other morning, I spotted the professional dog walker, who walks Bootsie, a golden retriever/poodle mix. I was in the van, and they were going up the hill to home. I couldn't stop, but I wished I had been able to do so, because I miss them.

    Years ago, I walked at 7:30, and I was fit enough to walk to the park, where all of the "dog people" gathered to let their dogs run and play after they'd pottied and cleaned up. They stood around solving the world's problems, while their dogs scampered. I was dog-less then, so it was a doggie fiesta for me every morning. "There's the lady, who scratches behind our ears!" I imagined them thinking, as they ran up to me for their petting and loving.

    The home of one of the gentlemen I met there and his terrier, Kirby, is up for sale. They are original owners, like we are, and I was surprised to see the listing. He is a few years older than I am, and the last time I saw him was in 2017, when I told him that Jim had been diagnosed with cancer. These neighbors all know our life story, so of course, he was very sad to hear this news.

    I'm hoping to encounter him or maybe another neighbor, who is friends with him to find out why they are moving. Of course, my first thought went to he or his wife passing. Or needing assisted living, although they both seemed to be in good health 2 years ago. Maybe they just want to downsize at their age, move to a smaller place.

    NEIGHBORS

    The neighborhood is changing as we "original owners" are aging. I miss all of the friends I have made on my walks over the last 13 years, and all of the neighbors on our street, with whom we were very close. Like John's parents, who lived two doors down from us. And Frank and Linda across the street, who were like second parents to me.

    The new neighbors are nice, cordial and respectful of me as an "elder." But I don't know them. I will say that the man, who bought John's parents' home pointed out that our back tire was going flat. I thanked him profusely for letting me know. It felt like he was sort of watching out for us, knowing we're old, and probably about our children from the neighbors.

    I wonder sometimes how many of the neighbors on our street were aware of the fire engines, police cars and mortuary van on April 12. The neighbors across the street have a surveillance camera in the upstairs front bedroom window.

    I remember one of the newer neighbors walking up our street, as Jonathan was being wheeled to the van. She recognized me, as I stood on the driveway, sobbing, and she smiled at me. Then, she noticed the two officers and their squad car in front of our home, and the mortuary van. She looked confused and concerned, but she said nothing and kept walking.

    Many years ago, all of the neighbors would have been on the street or in their driveways, and many of them would have come to me to console me and cry with me.

    GRIEVING

    I keep waiting for Jonathan and Michael to visit me in my dreams, but I am not dreaming. And, if I am, my dreams aren't memorable, or they are too perplexing to understand. What should be the most relaxing time for me, when my head hits the pillow, is the most stress-filled and painful time. I try not to focus on Jonathan's passing, seeing and reliving every second. I begin praying in earnest. Eventually, exhaustion takes over, and I fall asleep.

    Now I wake up at 6 a.m. That was the time, when I would go to bed for a couple of hours, after spending the night on Jon's chairbed. As long as Jon was stable, and Jim was able to take over for a couple of hours, I went to bed.

    Everything is changing. It feels wrong, but I have to go on with these changes.

    I'm seeing ads and promotions for movies that Jonathan would love, a new Dwayne Johnson movie, the Elton biopic, and the live action remake of Aladdin with Will Smith. And the Avengers finale. I just hurts so much ... It was always his birthday or Christmas any time of the year. We'd bring in a present bag, and he'd pull out a movie or concert. We'd sit and watch it with him. He loved our movie time. I remember all of his movies and concerts, having watched every one of them dozens, or hundreds of times. I can't even look at them in his room now.

    It's actually becoming more difficult for me to be in Jonathan's room than it has been. I can't describe this in any manner, which would make sense. I can only think that the reality is beginning to settle in, where the shock is lessening a bit. I'm still in shock, and I probably will be for some time. But at some point, with all that I've had to do to "finalize" Jonathan's passing, reality is hitting me. I still have so much more to do, so reality is going to keep rearing at me.

    I'm not crying. I don't seem to be able to allow myself the luxury of tears, because I fear that they won't stop, and I'll get congested again, and it's just too tempting to give in to unrelenting tears.

    This afternoon, as Jim and I were watching an old movie, Jim looked at me and said, "Are you thinking of our boys? Of course, you are. I'm so sorry, honey."

    I responded stoically, "I'm always thinking about Jonathan and Michael. It's very hard to stay balanced. But, I'm trying. I'm doing my best."

    Our conversations about our boys are peripheral, because it's just too painful to go there. And, Jim needs less stress, so we don't go there. we simply are not grieving together. And that is solely out of my concern for Jim's well being. He needs the least possible stress, and nothing is more stressful than grieving over your child.

    Holding it in isn't healthy, either. So, there is the challenge.

    Thank you all for listening, reading, loving, praying for us. I hope I'm not exhausting you with my tales of woe. I know what I have to do. And I'm doing it the best way I can now. It is a balancing act, for certain.

    We love you and pray for 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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  9. #95
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    We're not exhausted Rose. Your story is real and we know it and want to hear from you.

    Jeanie, called me this evening and wanted to know about you and Jim. I was so happy to be able to tell her that Jim seems stable and a little better the past few days or so.
    Virginia

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  11. #96
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    Default The Sisters Of Sorrow And Bliss

    ((((((Virginia)))))) ~

    Thank you so much for reassuring me that I'm not wearing out everyone. I feel like I should be paying all of you, or least sending you all some kind of gift card. I truly appreciate the support I find among you all. Being able to write and spill it all out is therapy for me. It helps me to release a little of the raging tumult inside of me.

    And thank you too for keeping Jeanie abreast of our saga. Bless her sweet heart. I know that she worries about everyone on the MS forum, as well as Jim and me. We are so blessed to have such wonderful, caring friends.

    I had trouble sleeping last night. I just couldn't shut down my brain, turn off the images of Jonathan, or the anguish churning within me. I am praying for peace and comfort, for reassurance, for signs. And I'm praying for Jim, and trying not to be fearful but hopeful for him.

    A dear friend recently wrote to me, "I don't know why all of this is happening to you at one time." Nor do I. In that we are all older and that's when things start deteriorating, it makes sense. The timing of Jonathan's passing and Jim's intense needs is notable.

    God placed Jonathan and Michael in my arms as a blessing for me, to save my life, and give me a definite purpose to serve "the least among us, who are the greatest." With the gift of Jonathan and Michael also came the Sisters of Sorrow and Bliss. To know euphoric joy means that we also must know the depth of sorrow. And I have.

    Then, at a time, when Jonathan and Michael were young men, and I was aging, God placed Jim in our lives. After so many years with an absent Dad, Jonathan and Michael were given Jim, the world's most wonderful Dad. He didn't run away. He stayed by their sides day and night. He was there when they passed, and in Jonathan's case giving him CPR. Jim had just come home from the hospital 3 days before.

    So now, I'm realizing that everything happens for a reason, and timing is everything. I understand this intellectually, and even spiritually, but it is not helping me.

    We fight to stay alive, to stay together, to see it through to the end, when we'll find another world.

    But without my beloved Jonathan, Michael, and Jim, I will be alone.

    I don't know how to do that.

    Thank you all for your love, prayers, support, understanding, and patience. We love you and pray for you and your loved ones and 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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  13. #97
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    Rose, there was a time when I didn't want to go home, but I was blessed with a dog and so I went. There were times when I couldn't sleep in the middle of the night and got up and drove, purposely getting lost, until I wore myself out and had to then drive to find my way back home to that precious dog. The anxiety I felt was through the roof, I could not cry and I just wanted someone to take a knife and cut the pain out of my chest.

    However, little by little, step by step I worked my way back, never to forget but to try and live as best I could. There is never a good age to loose someone, but I felt cheated because I was younger than most widows and yet had already been married for 26 years and two days. Now, I understand that it doesn't matter how young or old we are suffering is suffering when we loose our right arm.

    In addition to this, in your case, you have lost two sons and all of this together just breaks my heart into tiny pieces and yet I know that there is nothing I can say to really make it better.

    God forbid that something happens to Jim, but if it does I just hope you will find a live support group. Remain with us, but find women who are there and can put their arms around you when you need it and you can them when they need it, ladies that you can see a movie with, or when you start to feel like it take a week-end trip with them. My dog and my Widow's support group helped to save me.

    There is no choice but to keep on going. I hope it will not happen, but if it does you will find the strength to do that - somehow.
    Virginia

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  15. #98
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    My dear Rose, Virginia has been eloquent - she has said what is in my heart. Thank you, Virginia!
    Your message about your neighourhood reminded me of a powerful memory, Rose. In 1987, we bought our first house. It was an english cottage in a community that was built for WW2 vets in Ottawa, all the streets had english names - we lived on Marlowe Crescent around the corner from Letchworth. All the cottages were different and all had leaded pane windows and lovely peaked roofs. The day we moved in, an older lady knocked on our door. She said, "I've lived in this street all my married life and I've brought you dinner - and some baking. Welcome to our neighbourhood!" Can you imagine? I will never forget her kindness and just the power of community in her gesture. This is missing today. People feel that others 'want to be left alone' or it would never occur to people to bring food for moving day or when someone has endured a tragedy as you have. Or come out into the street to hug and cry together. Today, we have each other HERE online. Is this any less real? I don't think so - I think you can feel our love and our hugs and support, because I can tell you that we all feel your presence in our lives, Rose. You are one of my dearest friends and I wish every day that I could be in your street, knock on your door and give you a very long hug. Of course I would cry because I am crying now. xoxo Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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  17. #99
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    Default Grieving Together

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

    Virginia and Donna ~

    Thank you so much. I will reply to your wonderful posts soon. Today, I had a rather overwhelming day, which I wanted to share with all of you. So, I've been occupied with that and wrote a post about it. Here it is ~


    This afternoon, for the first time since Jonathan passed, Jim and I talked in detail about that morning. Jim said that he had something, which he wanted to clarify with me.

    While he isn’t positive of the time, he believes it was about 3:00 a.m. that morning, when he got up to go the bathroom. I was lightly asleep on Jon’s chairbed, after checking on Jon. Jim came into Jon’s room to check on us.

    When Jon saw Jim, Jon reached out his hand to his dad with a sweet smile. As always, Jim took Jon’s hand, kissed his forehead, told him he loved him, and then said, “Try to go back to sleep now, son.”

    At 3:30, I was up with Jonathan, and I turned on his formula. He reached out to me and smiled. I hugged him, kissed him, told him how much I love him and how beautiful he is. His SATS were 85, so I increased his O2 to 3 liters. His heart rate was 105, which was much lower than it had been. I thought he was improving.

    About 4:15, I hugged and kissed Jon and said, “Mommy is just going to rest over here on the chairbed for a few minutes. I love you.”

    When I got up at 4:40 to check on Jon, he was lifeless. I put the pulse ox sensor on his toe. Dashes. No numbers. I ran out to Jim screaming, “Jon isn’t responding! Oh Jim! Oh dear God!”

    I called 911 as Jim started CPR.

    Of course, it was painful for us to recall these details, but we both agreed that we had had our moments with Jonathan, before he passed. He was calm, responsive, smiling, loving us.

    Jim said, “Jonathan went to sleep. Isn’t that how we all hope we will go?”

    And, we observed that Jon was smiling, just as Michael was. Peaceful, finally at rest after so many years of struggle to survive this Earthly life.

    TRAUMA/PTSD/GUILT

    From there, Jim and I covered the trauma that followed with the firefighters, police, CSI, and mortuary attendants. Jim was in his bed during most of this, as he was quite ill. I said, “I don’t know how I sounded to you, when I was on the floor with Jonathan. Was I wailing? Did that upset you?”

    “You sounded like a Mother grieving over her beloved son. Of course it upset me that I couldn’t be in there with you. But I knew you needed all of that time, and more, with Jonathan. And you had to let it all out. Everyone here understood. They all felt so sorry for you. I could see the sadness on their faces.”

    I commented that the police especially looked at everything in Jonathan’s and Michael’s rooms. And that there are photos of them all over our home and evidence of our love and care for them.

    Then, I finally spilled the beans with Jim that I am depressed (he knows), that I feel guilty (he knows), and that I have PTSD (he knows).

    He assured me that I had no reason to feel guilty.

    “I should have taken him to the ER,” I countered.

    “You were going to take him to ER that morning.”

    “I shouldn’t have waited.”

    “You waited, because he was getting better, and because we’d been here so many times before, even worse than this time it seemed, and he pulled through. You wanted to spare him the gurney, the ambulance, the hospital, all of that pain, if we could get him through it again.”

    I continued to protest and defend my feelings of guilt and remorse.

    Jim said earnestly, “Honey, when I look at your crooked back, you know what I see? I see Love. I see 50 years of Love for your children. You didn’t fail them at all. Look at all of our pictures. You, and then we, gave them a great life, despite their medical problems. They were dearly loved, and they were happy.”

    By now, I was sobbing. He continued, “And they both died peacefully, with us, when they were ready to go. And we always feared that they would outlive us. We wanted to be there with them when they transitioned, and we were.”

    Jim said that he watches me sleeping in Jon’s recliner, so I can be available to Jim if he needs me in the evening/night. He said that I thrash, moan, mumble, and he worries about me. I’m unaware of this sleep behavior, of course. Jim wonders whether I am working all of this out in my sleep. I don’t think so.

    I explained to him that I have flashbacks constantly all day and night to Jonathan’s final hours with us. Every time I walk down the driveway, I see Jonathan being placed in the mortuary van. More sobbing.

    Then I clutched Jonathan’s photo close to me, and I just wept unabashedly. Jim told me to “let it out,” and asked me if I wanted to climb onto the bed next to him, but I was paralyzed with grief.

    After I pulled myself together, we hugged and promised that we won’t hold anything back from now on. Jim had been “waiting for the right time,” and I had been “not wanting to cause more stress.”

    Jim, always thinking of me, said, “I wish I had met you sooner, so that I could have helped you more, and we could have had more wonderful times together when Jon and Michael were more able to do things.”

    “You were their only Dad, and you loved them and cared for them in every way. You were always at their bedside in the hospital or at home. I wish we’d had the whole 50 years together, but we’ve had 27 years. A blessing for all of us.”

    Tomorrow, May 25, is the date in 2003, when the ventilator was removed from Michael, and we gathered around him with prayer, love, scripture, and blessings. Just to prove he was amazing, Michael rallied for another 5 days. Jim has memory problems, but he remembered May 25 today.

    This was a major breakthrough for Jim and me today. We have been repressing our grief out of concern for upsetting each other, when what we really needed to do was to grieve together.

    In 27 years of 24/7 existence, with the exception of less than a month with his hospitalizations and going to England for 5 days for his mother’s funeral in 1999, we do know each other very well. And we are always putting each other ahead of ourselves.

    God Bless Jim for recognizing that we needed to do this and initiating the conversation. Jim knew I needed to cry, and he brought on the flood. It is helping me tonight. I feel relieved of some of the burden on my heart and soul.

    Thank you all for your love, prayers, and support of us, as we navigate our way through this confusing and complicated journey.

    Please know that 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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  19. #100
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    Oh. Oh. Oh. I am so glad that you expressed your feelings to each other. I am so glad that you shared your experiences of Jon's last hours and of how you both feel now. I am so glad. Because you have each other and now you can comfort each other. xoxo Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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