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Thread: Remembering Jonathan

  1. #21
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    Rose, you have been so smart. I am feeling better about you and Jim. I just love that version of "This Little Light of Mine" and Johnathan does too. He is still saying "You Go Mom", it will take more time, but you are going to be alright." That is what he wants you to know.
    Virginia

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  3. #22
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    ((((((Virginia)))))) ~

    Thank you so much. We are feeling better too. Yesterday, Jim sat in Jon's room for a little while, with the window open, sea breeze wafting, looking at our boys' gardens, thinking about the planting in Jon's garden, talking to Jon.

    The grimness and sadness in his room are replaced with light and beautiful memories of Jonathan's life.

    Perhaps the most difficult impact on me after losing Michael, and now Jonathan, is that they don't need me anymore. That is a blessing for them, of course, but after caring for them all of their lives, my hands are reaching for ways to care for them still. Their memorials, gardens, and keeping their rooms clean and filled with their spirits is my best way to care for them now.

    This is a process, which Jim and I will endure for the rest of our lives, however long that may be. During that process, we'll have good days and not so good days, but we will continue to strive to find ways to heal our broken hearts and celebrate our beautiful sons.

    And, I do believe that Jonathan and Michael are happy to see the progress we've made in helping ourselves to heal a little.

    Jonathan was a major Bruce fan. He has the DVD of the concert from which that song was taken. That is Jim's favorite Bruce DVD. We sang all the songs with Jonathan, and we danced. We let our little light shine.

    We send you healing prayers, Virginia and thanks for your loving support.

    Keep letting your little light shine ~

    Love & Light,



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

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  5. #23
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    Default Five Months


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

    I has been 5 months today, since Jonathan received his wings.

    While so much has happened in our lives since that day, Jim and I agree that we canít believe that it has been that long. It seems like just a few days ago, as our memory of his passing is still vivid and fresh. Forever imprinted on our broken hearts.

    We know that Jonathan and Michael are watching over us. This morning, I woke up to check on Jim and fell back to sleep to a very busy dream with Jim, me and our boys, plus lots of others. It was a good, but very active dream.

    We have no idea why Jim is faring as well as he is, and we believe our boys are intervening on his behalf. We have no doubts that Michael intervened many times for Jonathan through the years. Jon just kept defying the odds and amazing his ICU physicians, nurses and therapists.

    Every stressful crisis weíve faced from Jimís health issues to electronic problems to van problems and so on, weíve had a quick and easy resolution, with the help of our wonderful friends, and very kind people, who provide us with services.

    Whether here, there, or everywhere, we are all one. The four of us are a unit, and we can never be separated.

    In their honor today, here are two songs, which we sang to Jonathan and Michael, and they loved:

    Blue Eyes

    https://www.youtube.com/watch?v=UWg6soESiI8

    Your Song

    https://www.youtube.com/watch?v=RvQHzEw0sQM

    We give thanks every day for the blessings of Jonathan and Michael and pray for strength, comfort and peace until we are reunited.

    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. #24
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    This made my day! What a lovely picture of your boys! I'm quite certain they're your angels watching over you and Jim. Can't believe it's been 5 months. Thanks for sharing with us.

    Mary Grace

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  9. #25
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    ((((((Mary Grace)))))) ~

    Thank you so much. Aren't they adorable. Jonathan put his arm around Michael to help him sit up. Michael was filled with joy and love. Jonathan looked at the camera with that smile. So close, so loving to each other, so strong and brave, and filled with Light.

    A lifetime and beyond of devotion to each other. Now they are reunited, and I know that they are together, safe and free in God's Arms.

    We can't believe that it's been 5 months either. Time is such a peculiar thing, and as we grow older, it moves faster.

    Our prayers are with you, Kathleen, and your beautiful family. We send our love.

    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. #26
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    Ohhh that photo, Rose! Thank you so much for sharing your sweet treasures over the years. I know that I feel I know them so well. Sending much love 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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  13. #27
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    ((((((Donna)))))) ~

    Thank you so much!

    So many photos of Jonathan and Michael seem to capture the light around their heads. I've always seen halos there, of course. Every time I look at that photo, I can hear Michael giggling. He had the cutest laugh. Jonathan was being Big Brother to Michael, so he was being a tad more serious.

    We miss them so very much. It's really difficult some days more than others. I'm just so exhausted from everything going on with the iPad and computer, and a million other things, it interferes with being allowed to simply grieve as I should.

    Thank you for everything, Donna. Our love and prayers to you, Jim, Nick, Natalie and your family.

    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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  15. #28
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    ((((((Hugs to All)))))) ~

    November is here. Jonathan's and Michael's birthdays are approaching rapidly. I feel like I am crumbling.

    Yesterday, in the shower and the entire time I was getting ready to go with Jim to radiation treatment, I cried. As I was putting on my makeup, I saw my swollen eyes and the pain they reflect. I managed to become presentable to the public. I didn't mention this to Jim. His plate is overflowing.

    Earlier, I had tidied up the backyard, which is laughable, because that would take a giant vacuum. I filled Michael's pond, but his waterfall is not working. I can't get on my knees, sit down on the side, balance on the rocks standing, squat, or anything else to get to that motor. I would be inviting an accident and debilitation, most likely. But I did clean the fountain pump, which is working well.

    I watered our pathetic array of plants. Even the Jade plants are withering, and they are the heartiest plants around, which is why we have so many of them. The angels from the two flower arrangements we received after Jonathan's passing had been blown to the patio floor. They are unbroken, thankfully. The desert rose plants broke off. I can replant them, but I was done by that point.

    It hurts my heart to look out upon our once lush backyard and see this expanse of dirt, plants barely surviving, our giant tree needing trimming, our old patio furniture. It's a mess. This is where we have tributes to Jonathan and Michael. The solar lit angels and roses are so lovely and comforting at night, when they work. But in the daylight, the yard is depressing. I've been here before.

    Physically, I can't do anything about it. As long as Jim is struggling, as he is, we can't have any work done on our home or yards. It's just impossible.

    So, I try to make it a little better, just to help my soul. That lasts for about 15 minutes.

    Today, on my way to clean Jim's bathroom, I stopped and dusted Michael's room. I had a dry paper towel in my gloved hands, and I've been thinking about dusting for days. So, I dusted. Every shelf, ornament, gift, candle, their urns. Tears streaming down my cheeks. Of course, this is the room where Jonathan last rested. The blanket the paramedics provided to cover him is still folded and in the corner.

    BIRTHDAYS

    I began thinking about their birthdays.

    Jonathan celebrating the Big 5-0, and I had so many fun plans for that occasion. I wanted him to make it to his 50th birthday so we could lavish him with attention and surprises. The number of new movies on Blu-Ray now, which Jon would love, break my heart. I think about the years, when I had to really look for movies, and here they are now in abundance. I only want to watch them with Jonathan, and it would be too painful to watch them without him.

    It is his 50th and our first birthday without him here to celebrate with us. Firsts are extremely, extraordinarily painful.

    Michael's 49th birthday represents several milestones for us. This is our 17th year of celebrating Michael's birthday without him here. It still hurts just as much as the First Year.

    On their birthdays, we will be at rad onc with our cancer community. The best gift I can give to Jonathan and Michael is the one they gave to me: being there with Jim. Bonding and helping other cancer patients and their loved ones is another gift we can give Jon and Michael. We can honor them with our love for each other.

    TRIBUTES

    Finally, today, I bemoaned that the decorations in Michael's and Jonathan's rooms is still Spring/Summer. By now, their rooms would be filled with autumn and Halloween and Thanksgiving decorations. I just have not had time or energy to take down one and put up the other.

    That led to thinking about Christmas, and that slope is slippery for me. When Jon passed in April, it was still Christmas in his and Michael's rooms. This brings back sad memories, also being our first Christmas without Jon.

    Jim said, "Just don't do it."

    Okay. No. That will not work for me.

    Then, I heard a quiet voice in my head say, "Take it as it comes. Day to day. Don't plan ahead."

    Jim followed with, "Hopefully, by that time, I will be able to help you."

    I replied, "That would be wonderful," and held back my tears.

    Jim is having daily agonizing gut pain, maybe gas, and TUMS sometimes helps, needing frequent breathing treatments, and he eats less than a parakeet. Okay, so far today, a cup of tomato soup and 1/2 a veggie ham and tomato sandwich, oh, and a gulp of Orgain.

    Nonetheless, he instructs me not to be worried and assures me that he knows what he is doing and how he feels.

    Sure. I can do that.

    Immediately thereafter, I will leap over a tall building and stop the Sun from frying our Planet. Easy. Next?



    That's the place I am in right now.

    So, I am reaching way down deep into my bag of coping tools, trying to find the ones, which will work and tossing the others into another bag.

    Thank you all for listening, reading, caring, and even just curious. Every moment of life contains a lesson.

    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. #29
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    ((((((hugs to All))))))

    today is Jonathanís 50th birthday.

    I woke up at 4 a.m. crying. I couldnít go back to sleep, and Jim was coughing and restless. I checked on him as he started a breathing treatment, hoping he would fall asleep. He didnít and neither did I.

    At the half way mark on my walk, I stop for a few minutes to rest on a bench at a spot which used to be Tot Lot. Now it is just a circle of sand with nothing there. I have asked our association to plant something there, but most of my requests Are ignored.

    I read a text from my treasured friend, who is a daughter to me in every way. She has lost her mom and recently her mother in law from cancer. She is the only friend who remembered Jonís birthday. I .burst into tears and tried to compose myself so I could finish my walk and return to Jim.

    The day was filled with laundry for Jim, cleaning, emailing Dr. K about Jimís blood draw and getting ready for treatment number 10. I put up the happy birthday banners in their rooms. But I have no gifts for them.

    My sweet friend consoled me by saying that my gift to Jon and Michael is taking care of Jim. I know this is what our boys want for us. To be together through Jimís journey.

    Everyday before Jim walks through the door for treatment, he kisses me and we say I love you.now that others in the room know our story, they are seeing our devotion and love. This is another gift we are giving to the our new friends in the room. We are keeping Jon and Michael alive and inspiring those struggling with cancer.

    This is their legacy.

    We lost our internet connection today so this is the best I can do Avon the iPad. It is strenuous and I can barely read the screen. But I had to post on Jonís 50th birthday.

    I canít post photos but just scroll through this thread again and you will see many of him and Michael. My precious angels, who I miss with all of my being.

    We all agree that they are in the best place celebrating their birthdays. But I am still human, and I miss them so much no words could ever convey.

    happy Birthday in Bliss Jonathan! I know you and Michael are celebrating together.

    Mommy loves you.

    Love and 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. #30
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    Rose, you continue to amaze me with your strength and goodness to others even in the midst of such sorrow. If ever there comes a time when you question what your purpose is, just remember the many kindnesses you have shown others, and they respond to you the same way.

    I truly believe this might be your purpose in life. There may come a time when you work with grieving families. There is no one better qualified and no one who feels others pain the way you do. I know you had rather not have this gift, but I believe it was your boys who gave it to you. When and if the time is right they will guide you through it.

    Prayers are said daily for you and Jim.
    Virginia

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