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Thread: Jonathan Received His Wings Today

  1. #31

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    [QUOTE=Earth Mother 2 Angels;87027]
    Attachment 5198
    Remember Me This Way


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

    Thank you all so very much for your condolences, prayers, and love for us. We are so grateful to you for traveling beside us on our journey and lifting us up, when we are struggling.

    JIM

    I stayed with Jim again last night until about 2:30 a.m. Jim had slept well on his side for the first time in days. The recliner is just not working out for me, as it seems to create pressure on my right side/back, where I laid on the floor with Jon. I can’t keep trying to sleep in the recliner, if it’s going to exacerbate that pain.

    Jim woke up at 3 a.m., as I just climbed into bed (seems a pattern here, eh?), so I went down and got him repositioned, checked his output, told him to drink more water. I then went back up to bed, awoke at 7:30, and went down at 8:00 after heating up my back. Jim had not fallen to sleep again.

    At least as far as he can remember. He doesn’t realize that he is sleeping now. He dozes on and off.

    Cath change, new drainage bag (infection protection), breathing treatment, breakfast (I had a good breakfast today as did Jim), tea, reminding Jim to remain straight in the bed and not lean to his right, taking his SATS, adjusting O2, How many times have I found him with only one cannula in his nostril, the other on the side of his nose? Or on his chin? etc. etc. etc.

    THE URN SEARCH

    Donna and Tracy are helping me find the urns I want to use for Jon. I want Jon’s urns to match Michael’s urns. So, we communicated via email today.

    Jon gave me his first sign today, when the “End of the Trail” popped into my head.

    I searched that and found that urn, but the one I need is “Warrior.” Turns out this Lakota Sioux tribe also had that urn. It’s different than Michael’s in color. But it suits Jon as does Michael’s. Bold for Jon and demur for Michael. Additionally, Jim is fascinated by the Lakota and has studied them extensively. He reads his favorite book about them often.

    As it happened, Donna found the same urns on a different website.

    Thank you so much, Donna and Tracy, for helping me.

    BACK TO JIM AND THE O2 CONCENTRATOR

    Then Nurse Nancy called needing information about Jim’s supply needs to submit her evaluation of Jim to the agency admitting him for service.

    That brought up the whole Jim having his own O2 concentrator debacle, and I’m losing it over this, because this is ridiculous. He has Stage IV LUNG cancer, COPD, and dozens of other problems. He needs a blasted O2 Concentrator! Why must I fight for this?!

    Since Dr. H retired, Jim doesn’t have a pulmo, and the one, who saw him in the hospital didn’t think he needed O2 at home. Well, I’m not a doctor, but I know that he needs it, and so does Nancy. Dr. K says it’s out of his purview.

    So, I emailed Dr. A, our PCP for 20 years today begging him to help us. Just authorize an O2 concentrator for Jim like you did for Michael and for Jonathan all of these years. They didn’t have a pulmo either. Or a neurologist. Dr. A and I handled all of that, with Nancy’s help.

    I closed my email with, “We are exhausted and grief stricken. Please help us.”

    HOW THIS IS AFFECTING ME

    You know, our son just died. He JUST died, not a week ago, two days ago. Why do I have to be in charge of getting what Jim needs to keep him alive?

    I’ll say it to all of you, as I did to Jim today, “I am not ready to lose you too.”

    I don’t think I could take it, my friends. I am dealing with trauma, of a magnitude that I cannot adequately describe, watching Jon receiving CPR, laying on the floor, the police, everything. I am so bereft, I can barely deal with it, so I just have to set it aside.

    Jon’s chart is still on the dining room table, and on top of the chart is the bag with Jon’s locks of hair. His meds are still on the kitchen counter. I threw out his water pitcher today. I washed his Elton mug, in which I kept his G tube and med syringes, in the dishwasher.

    And all of you so want me to rest and take care of myself. Clearly, I’m doing the best I can in that regard, but Priority #1 now is Jim. I do not have the option of not taking care of him. I’m terrified of germs for him, so having others here to care for him isn’t feasible, if I could even find someone to fit that description. Nancy can’t do it. I can’t even get a concentrator for Jim, so I can’t imagine finding a caregiver. Most of all, Jim doesn’t want that.

    MY WALK

    I did take a walk this morning. It was painful, as my RA is flaring, of course. But I knew I needed fresh air and the gorgeous weather, sunlight, and blue skies for strengthening. As I reached the overlook of the golf course lakes, my favorite spot, a group of about 10 men on bicycles came streaming past me on the sidewalk. (I was on the grass.) They came in 2-3 men spurts. Every one of them said, “Morning!” to me.

    I had my back to them, so finally I said, “How many of you are there?!”

    The last man said, “That’s it! I’m the last one! Have a great day!”

    That’s the first time that has happened in my 13 years of walking this trail.

    Are Jonathan and Michael riding bikes in Heaven?

    I sat on the bench looking out on the horizon and the peaceful setting. I began to sob gently. I have to get it out, and when I cry, it upsets Jim. He feels helpless and probably like he’s burdening me, which of course, is impossible. We vowed to see it through to the end. We will.

    If our roles were reversed, I know positively that Jim would be doing all of this for me. The careproviding part would be easy for him, as Jim is an incredible, competent, and loving careprovider. But the rest of the administrative, managerial, organizing stuff, the phone calls, the fighting, he wouldn’t know where to begin.

    It’s no secret to anyone how much I adore Jonathan, Michael and Jim. I would move mountains and walk around the world for them. This is why God put me on Earth and blessed me with them. I answer to the Highest Authority, and I will carry out my promise with honor and unconditional love.

    JONATHAN

    Our home is empty without him here. Jim and I have both thought that we heard him in his room, dropping the holder for his Blu Ray or DVD on the floor to let us know it was over, and he needed a new one, coughing, his various sounds when he’s enjoying his videos, and banging on his bed with his left hand as he’s falling asleep.

    It is so unbelievably difficult to go into Jon’s room, and especially to walk across the rug in Michael’s room, where Jon laid, and I cradled him in my arms for the last time.

    On the one hand, I want to go through Jon’s room with a trash bag, throwing out all of his supplies. His full G Tube formula bag still hangs from the IV pole. The light is still on. I want to freshen it up and create a new space for him, as we did for Michael.

    On the other hand, the thought of doing this petrifies me, because I can remember what it was like after Michael passed. It took me 5 years to be able to clean out his closet, and it was so painful then.

    The fact is that I don’t have time, energy, or strength to clean Jon’s and Michael’s rooms and create the Easter feeling I want to have there to replace Christmas. I don’t even know if I’m ready to do that yet.

    PROCESSING?

    I say that I’m processing all of this, but I’m not sure that I am, because I have so many filters obstructing full grieving over Jonathan.

    Jim’s needs are urgent and intense. I can’t fully grieve, when I have to be strong for him.

    I don’t know why all of this has to happen at once, and I’m trying not to be upset and say, “This is a little unfair, don’t You think?”

    It’s a challenge for me right now to believe that all things happen for a reason. What is the reason that my son dies and my husband clings to life? And I am riddled with guilt that I didn’t do enough for them?

    Thank you all for telling me that I’m a good mother and wife, but in my being right now, I wonder if I truly am, because I should have done this, that, the other thing.

    As I was sobbing over Jonathan on the floor, the paramedic came in and said softly, “Even if you’d taken him to the ER, this might have happened. This was not your fault, Ma’am.”

    They saw Jon, his contorted body, full of fluid and lymphedema scabs on his legs. They saw all of his prosthetics, which kept him alive for so many years. They saw the many photos of Jon and Michael and us all over the house, when these problems didn’t exist. When they were young and able to be out and about all of the time. Our boys are everywhere, and, it’s obvious to anyone how much we love them.

    I have to do what needs to be done, and I will. I always have, and I always will. To be able to do that, I will have to let the pain creep in a little at a time, deal with it, and move on to the next thing. The time will come, when it will all flood out. I understand grief well, and I know what coping tools I have to use to get through Jon’s passing and meeting Jim’s needs.

    Jim and I are using humor to help us. We watched a couple of innings of the Dodger game today. We’re trying to deflect our pain, because Jim’s health is so fragile. And we both know that.

    Nancy will be here Tuesday for Jim’s blood draw via his port. Please say a prayer of thanks for Nancy. She is being put through the ringer by her agency. But she is working so hard for us.

    I could go on, but that’s enough for now.

    Thank you all so much for listening and letting me express my pain and anxiety in its rawest form.

    We love every one of you and pray for you and your loved ones.

    Love & Light



    My dearest Rose,
    I hope you feel my love from afar. You have been on my mind everyday. Knowing the depth of your despair, to lose a child. It is not the natural order of things. To bury a child is a pain you never get over. It is UNFAIR! I remember after Meggie passed. Very shortly after. We still had people here from the funeral. I was standing by the island. All of a sudden, I jogged down the hallway. I knew I heard her cough. She wasn't there. Even 3 years later, I will hear a sound, and I still will get up. Being so strong for Jim and his needs, because it is not a question, or an option. It is love. I so understand your love. Your Jim, is like my Scott. Our everything! Unless you have a love like that, you can not understand the gravity of even thinking it could be gone, so you do everything in your power to ensure Jim is taken care of. It is love. I wish I had words to even help comfort your utter soul breaking pain right now. I do not. I am by your side to stand with you, if only in love and spirit. Thanking God for you. Our friendship all of these years. For your angels Michael and Jon, and your love, Jim. I love you so much my friend.

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  3. #32
    Distinguished Community Member SuzE-Q's Avatar
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    Sending you strength and cyber support, Rose.

    I'm glad you and Jim have each other to help you through this difficult time.

    Without you and your devotion, your boys would never have experienced the quality of life that they did, you brought joy and comfort into their lives thanks to your unceasing and tireless efforts. Please never doubt how you impacted their lives in the best possible way. You made a big difference. And you had developed an inate ability to assess each situation to know how to respond to their needs. This ability arose from years of devoted care.

    I am a strong believer that people leave us in a way they choose to in order to help the people they leave behind. I do not believe it was a coincidence that Jonathan left while you were having a nap, but were still close by. He had you near enough for him to feel comfortable in taking flight with his Angel wings, yet without you feeling you needed to "do" anything to prevent his journey.

    I hope you and Jim had a quiet day together. Sending you my love and comfort, dear lady.

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  5. #33
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    My dear Rose, how are you doing? How is Jim?
    I read something today from my friend Brad who is gay and is a playwright. He has just finished writing his memoirs. I wonder if maybe this resonates with you - you are sharing Jon with us.
    "During the worst of the plague (AIDS) years I never went to funerals. People said, "Go, find closure. Say goodbye." But I didn't want closure and I didn't want to say goodbye to people who shouldn't have been dead in the first place. I looked at funerals the same way I looked at crying for the dead, if I started I would never stop. I held onto each of my friends who died even as others let them go. I carried them with me. I thought of them frequently. I imagined what life might be like if they hadn't died. I had endless conversations with them in my head. I held them in my heart.

    Then when the plague ended and the world moved on I realized it was too late to let them go. They were a part of me now; the grief and most especially the anger had been integrated into who I had become. I knew this was not a healthy thing and carefully compartmentalized these dead friends in the same part of my soul where I confine all of those things I carry that could hurt me. They grew quietish. I carried on.

    When I finished the book yesterday I was seized by this sudden fear that in telling their stories as they intersected in my life I would lose them. Lose a part of myself I had known since my early twenties that, even if it wasn't positive, was something I had grown accustomed to. Thankfully Spencer came over and we watched GoT, drank bourbon, talked and he took me away from such thoughts. I fell into bed the instant he left.

    This morning my dreaming mind woke me up, as it often does, talking to me about something I was dealing with in my waking life. This morning the dreaming voice said to me, "They're not gone, Brad. You've put them in a story. You're going to introduce them to other people. You're not losing them. You're sharing them. You don't have to hold them in that scary compartment anymore. They're free. You should be too."

    And then I cried those tears I'd been holding back for thirty years."

    Rose, I wonder if you can think a little bit the same way about sharing Jon and Michael with us. Maybe you already do. Anyway, I share Brad's words in case maybe you hadn't thought before (in quite this way) about sharing as healing. In case it helps ease even a tiny sliver of your pain, I'm sharing what my friend wrote. In away, your sharing helps Jon and Michael live on because none of us will ever forget your children and the love you and Jim have for them.
    Love, Donna xo
    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. #34
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Default Long and Rambling

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

    Thank you all so very much for your love, prayers and kind words of support. We love you all so much and are so very grateful for your enduring friendship.

    I have been writing this periodically throughout the day and evening, so itís long and rambling. Welcome to my world! Long and rambling ...

    JONATHANíS CHOSEN TIME

    As several have observed and shared with us, we believe too that Jonathan knew that his dadís illness was getting worse, and it is. Jon had been having repeated episodes of filling with fluid and all that goes with that, which was misery for him.

    I can envision Michael reaching out to Jonathan and saying, ďCome home and join me, so Mommy can help Dad now. Itís their time now, and your race has been run.Ē

    While I was not at his side at the precise moment Jon took Michaelís hand, I was with him. He very well may have chosen to spare me his final moment. But he knew then, and surely knows now, how devastated I am and how terribly I miss him.

    A very dear friend astutely noted that Jon waited until Jim came home from the hospital, before he passed. Jon was fine until that Tuesday night, when he filled with fluid. I even posted how wonderful it was that Jon was stable, while Jim was hospitalized. Jon wanted time with his dad, and he wanted his dad to be with me, so I was not alone when he passed.

    GUILT

    Today, I received a message of condolence from our PCP, Dr. A, who has cared for us for 20 years. He is such a loving, caring, kind person. He wrote:

    Hi Rose, I am so sorry for the loss of Jonathan. It was an honor and privilege to take care of him, and he will be missed. If I can be of any assistance in any way in your loss let me know. And I agree I think you did the best for both Michael and Jonathan. They were very blessed to have a mother like you.

    This means so much to me, because Dr. A knows how hard I fought to get the supplies and services Jon and Michael needed, and he was at our side every step of the way. He was so wonderful to me, when Michael was in the hospital, and he was new to us then. ďI support any decision you make, Rose,Ē he said, as I sobbed into the phone at the ICU nursesí desk.

    From my years of research on parental grief, and my participation on many grieving parents on line forums, I know that guilt is part of the deal. It is so common. ďIf only ÖĒ ďIf I had not done this ÖĒ ďIf I had only done that ÖĒ

    I also realized that the guilt was more prominent in parents of children with special needs or terminal illnesses.

    Because I have an engrained sense of responsibility, itís a natural detour for me to feel guilt. So, I have to remind myself that Iíve done my best, with all of its flaws and faults. There was no guidebook or manual issued, when my children were born. I had to learn as we went and figure out much of it on my own.

    Today, John comforted me, when he said, ďJon had 49 years, Rose. What did the doctors predict as Jonís and Michaelís life spans?Ē

    Well, it began with ďThey wonít live past 5 years.Ē And it moved up incrementally as they aged. 10, 13, 15, 18, 20, 25, 30 Ö pick a year and insert it where the ď5Ē is.

    He was trying to impress upon me how unique our situation is, and Iíve heard that many times before. Even Nancy said, ďIíve treated quite a few patients with developmental disabilities, and none of them lived to be 49 years old.Ē

    For this, we rejoice. As Jim said, ďIt is Jonís time. It was his time. He was ready.Ē

    JIM

    Every 4 hours, before his breathing treatment, Jim begins moaning and gasping. It is frightening, especially since heís on 4 liters of O2. I just gave him a treatment, and he immediately felt relief, as usual.

    I also did percussion on his lungs. First, I used cupped hands, then I remembered Jonís percussion tool in his room. I cleaned it with alcohol several times then began percussion. Itís a soft framed O2 mask, improvised by ICU respiratory therapists, which works perfectly for this purpose.

    Jimís urine output is respectable, however, he did pee a small amount of blood today. He had a very large BM today, which was excellent. But his belly is enormous. He is drinking a lot of water to keep hydrated, but he isnít releasing it as he should.

    He is generally holding SATS in the mid-90s, and his heart rate is normal in the 60s-70s.

    I am constantly asking him whether he thinks he needs to go to the hospital. I flat out told him today, ďPlease donít hide anything from me. If you have to go, you have to go. I canít do this again.Ē

    Port Access Kerfuffle

    Jim doesnít want a needle stick for his blood draw. It is far more comfortable to use his port. He also bruises badly with needle sticks.

    Turns out that we have to pay $100 for a monthís supply of port access supplies. Medicare and supplemental will pay for that if itís in the hospital or doctorís office, but not at home.

    Five phone calls for me. Three texts to Nancy from me. All to say, ďWe will pay for it!Ē

    Jim is quite ill, and he needs to have what he wants and what is necessary to keep him comfortable. We spent quite a lot of money on Jonathanís needs last year, which I deducted from our business taxes. It was the largest deduction weíve ever had. Jim now receives the same benefits. If he needs it, he gets it.

    Still no word on Jimís O2 concentrator. I have to inform all of the agencies soon that Jon has passed. This is so stressful.

    Jimís Status

    We are probably approaching hospice soon. I hate to say that, obviously, but I see the writing on the wall.

    In Jimís current condition, he cannot possibly tolerate, or be still for, a 45-60 minute radiation treatment. That is his last option.

    The tumor isnít going to be content to remain stable forever. We can only stave it off with CBD for so long. I also increased Jimís CBD intake today.

    This decline all began after Jimís last Opdivo infusion, when his WBC tanked. Dr. K gave him Neupogen, and it has been downhill ever since.

    I told Jim this evening that I sort of hope that he gets a platelet transfusion (infusion? which is it?), because I know that Callyflower and Meggie felt better after theirs. I want something to give Jim more strength to fight this battle, if it is to be so.

    But, if it is time for Jim to lay down his sword and shield, as it was for Jon, and for Michael, I must accept that too. I donít know how I will be able to function without my three beloved men, but Iíll cross that bridge, when I reach it.

    I can see it in the horizon. I know itís out there.

    JOHNíS VISIT TODAY

    John stopped by briefly today, wearing his mask and gown, to deliver a gift. The photo of Jon taken right before Thanksgiving, when Jon was in his recliner, as we put on his new mattress and pump, was taken by John.

    He had it enlarged. Then, he went to Michaelís craft store, and he found the most wonderful frame. Itís pewter, with open hearts, and each heart is accented with a small sparkling crystal. I will take a photo of it to share.

    He also brought a plastic basin for me to use to give Jim bed baths. I had asked him to pick one up for me, when he told me he was going to stop by.

    The Urn Search

    John picked up Michaelís bronze urn to turn it over with the hope of some information to lead us to finding another one like it for Jon. It seemed that the label was meaningless, but I remembered it.

    I searched for bronze urn manufacturers, and I found that name. I contacted them and was directed to their ďart memorialsĒ group. I am awaiting contact.

    It is impossible to find urns with male angels for some reason. John also found that to be odd, declaring, ďWhat about the boys? And the men?Ē

    Meanwhile, I called the Lakota Sioux site, where I found the ďWarriorĒ urn. A lovely lady apologized that it was out of stock. I then told her our story briefly. She was incredibly kind. She explained that one of their artists had been in and out the hospital a lot. How well we can identify.

    She told me that she would have the urn by next week and would call me when it was ready to ship.

    I have to take very deep breaths, as I wonder why nothing is falling into place as it should. And I have to devote so much time in my efforts to give Jonathan what he deserves in tribute to his legacy and his beauty.

    It just seems like something should go our way soon.

    MORE ABOUT JONíS MEMORIAL SERVICE

    John inquired at the club about reserving a room, providing beverages and food, and setting it up for video and sound.

    John is the most affable guy youíll ever meet, and everyone, who meets him, loves him. So, the club will go out of its way to provide us with the best.

    I want to do this to honor Jonathan and to celebrate his miraculous and courageous life. Itís very important to all of us to do this. Gathering together in grief and celebration is a vital part of our grief journey.

    Hereís where it becomes very difficult. Jim will not be able to be present. He asked me why today.

    ďHoney, first of all, at this point anyway, you are kind of tied to the house and bed. Secondly, you canít be in a crowd of 30 or so people. I will be wearing a mask for Jonís service, maybe even a gown and gloves. I couldnít bear to bring home any kind of infection to you. And Iím vulnerable, because Ií m tired, stressed and immeasurably grieving over Jon. Plus I have RA.Ē

    What do I do about this?

    FINALLY

    Jim and I have been in the unnatural position of worrying about outliving Jon and Michael. We have been trying for almost a year to find the opportunity to actually plan for Jonís needs with a Special Needs trust, as many of you know. I just havenít had the time to pull that together.

    Jim has had many dreams through the years after Michael passed of Jon alone in a wheelchair at the end of a long street. In my dreams, I see myself watching Jon being mistreated, and I am helpless.

    We donít have to fear this any longer. Jonathan knew. We know he knew, because Jonathan is very smart and intuitive, like Michael. He wasnít able to verbally communicate what he understood, but he made it clear to us always, as did Michael, that he saw The Big Picture.

    Another day is over, and night has fallen. Iím taking it a few minutes at a time. I feel like Iím balancing on a trapeze wearing high heels and holding a 1,000 pound pole.

    Once again, we thank you so much for being here for us. We cannot thank you enough. We love you and pray for you all and for 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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  9. #35
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    Thank you all so very much for your love, prayers and kind words of support. We love you all so much and are so very grateful for your enduring friendship.

    I have been writing this periodically throughout the day and evening, so it’s long and rambling. Welcome to my world! Long and rambling ...

    JONATHAN’S CHOSEN TIME

    As several have observed and shared with us, we believe too that Jonathan knew that his dad’s illness was getting worse, and it is. Jon had been having repeated episodes of filling with fluid and all that goes with that, which was misery for him.

    I can envision Michael reaching out to Jonathan and saying, “Come home and join me, so Mommy can help Dad now. It’s their time now, and your race has been run.”

    While I was not at his side at the precise moment Jon took Michael’s hand, I was with him. He very well may have chosen to spare me his final moment. But he knew then, and surely knows now, how devastated I am and how terribly I miss him.

    A very dear friend astutely noted that Jon waited until Jim came home from the hospital, before he passed. Jon was fine until that Tuesday night, when he filled with fluid. I even posted how wonderful it was that Jon was stable, while Jim was hospitalized. Jon wanted time with his dad, and he wanted his dad to be with me, so I was not alone when he passed.

    GUILT

    Today, I received a message of condolence from our PCP, Dr. A, who has cared for us for 20 years. He is such a loving, caring, kind person. He wrote:

    Hi Rose, I am so sorry for the loss of Jonathan. It was an honor and privilege to take care of him, and he will be missed. If I can be of any assistance in any way in your loss let me know. And I agree I think you did the best for both Michael and Jonathan. They were very blessed to have a mother like you.

    This means so much to me, because Dr. A knows how hard I fought to get the supplies and services Jon and Michael needed, and he was at our side every step of the way. He was so wonderful to me, when Michael was in the hospital, and he was new to us then. “I support any decision you make, Rose,” he said, as I sobbed into the phone at the ICU nurses’ desk.

    From my years of research on parental grief, and my participation on many grieving parents on line forums, I know that guilt is part of the deal. It is so common. “If only …” “If I had not done this …” “If I had only done that …”

    I also realized that the guilt was more prominent in parents of children with special needs or terminal illnesses.

    Because I have an engrained sense of responsibility, it’s a natural detour for me to feel guilt. So, I have to remind myself that I’ve done my best, with all of its flaws and faults. There was no guidebook or manual issued, when my children were born. I had to learn as we went and figure out much of it on my own.

    Today, John comforted me, when he said, “Jon had 49 years, Rose. What did the doctors predict as Jon’s and Michael’s life spans?”

    Well, it began with “They won’t live past 5 years.” And it moved up incrementally as they aged. 10, 13, 15, 18, 20, 25, 30 … pick a year and insert it where the “5” is.

    He was trying to impress upon me how unique our situation is, and I’ve heard that many times before. Even Nancy said, “I’ve treated quite a few patients with developmental disabilities, and none of them lived to be 49 years old.”

    For this, we rejoice. As Jim said, “It is Jon’s time. It was his time. He was ready.”

    JIM

    Every 4 hours, before his breathing treatment, Jim begins moaning and gasping. It is frightening, especially since he’s on 4 liters of O2. I just gave him a treatment, and he immediately felt relief, as usual.

    I also did percussion on his lungs. First, I used cupped hands, then I remembered Jon’s percussion tool in his room. I cleaned it with alcohol several times then began percussion. It’s a soft framed O2 mask, improvised by ICU respiratory therapists, which works perfectly for this purpose.

    Jim’s urine output is respectable, however, he did pee a small amount of blood today. He had a very large BM today, which was excellent. But his belly is enormous. He is drinking a lot of water to keep hydrated, but he isn’t releasing it as he should.

    He is generally holding SATS in the mid-90s, and his heart rate is normal in the 60s-70s.

    I am constantly asking him whether he thinks he needs to go to the hospital. I flat out told him today, “Please don’t hide anything from me. If you have to go, you have to go. I can’t do this again.”

    Port Access Kerfuffle

    Jim doesn’t want a needle stick for his blood draw. It is far more comfortable to use his port. He also bruises badly with needle sticks.

    Turns out that we have to pay $100 for a month’s supply of port access supplies. Medicare and supplemental will pay for that if it’s in the hospital or doctor’s office, but not at home.

    Five phone calls for me. Three texts to Nancy from me. All to say, “We will pay for it!”

    Jim is quite ill, and he needs to have what he wants and what is necessary to keep him comfortable. We spent quite a lot of money on Jonathan’s needs last year, which I deducted from our business taxes. It was the largest deduction we’ve ever had. Jim now receives the same benefits. If he needs it, he gets it.

    Still no word on Jim’s O2 concentrator. I have to inform all of the agencies soon that Jon has passed. This is so stressful.

    Jim’s Status

    We are probably approaching hospice soon. I hate to say that, obviously, but I see the writing on the wall.

    In Jim’s current condition, he cannot possibly tolerate, or be still for, a 45-60 minute radiation treatment. That is his last option.

    The tumor isn’t going to be content to remain stable forever. We can only stave it off with CBD for so long. I also increased Jim’s CBD intake today.

    This decline all began after Jim’s last Opdivo infusion, when his WBC tanked. Dr. K gave him Neupogen, and it has been downhill ever since.

    I told Jim this evening that I sort of hope that he gets a platelet transfusion (infusion? which is it?), because I know that Callyflower and Meggie felt better after theirs. I want something to give Jim more strength to fight this battle, if it is to be so.

    But, if it is time for Jim to lay down his sword and shield, as it was for Jon, and for Michael, I must accept that too. I don’t know how I will be able to function without my three beloved men, but I’ll cross that bridge, when I reach it.

    I can see it in the horizon. I know it’s out there.

    JOHN’S VISIT TODAY

    John stopped by briefly today, wearing his mask and gown, to deliver a gift. The photo of Jon taken right before Thanksgiving, when Jon was in his recliner, as we put on his new mattress and pump, was taken by John.

    He had it enlarged. Then, he went to Michael’s craft store, and he found the most wonderful frame. It’s pewter, with open hearts, and each heart is accented with a small sparkling crystal. I will take a photo of it to share.

    He also brought a plastic basin for me to use to give Jim bed baths. I had asked him to pick one up for me, when he told me he was going to stop by.

    The Urn Search

    John picked up Michael’s bronze urn to turn it over with the hope of some information to lead us to finding another one like it for Jon. It seemed that the label was meaningless, but I remembered it.

    I searched for bronze urn manufacturers, and I found that name. I contacted them and was directed to their “art memorials” group. I am awaiting contact.

    It is impossible to find urns with male angels for some reason. John also found that to be odd, declaring, “What about the boys? And the men?”

    Meanwhile, I called the Lakota Sioux site, where I found the “Warrior” urn. A lovely lady apologized that it was out of stock. I then told her our story briefly. She was incredibly kind. She explained that one of their artists had been in and out the hospital a lot. How well we can identify.

    She told me that she would have the urn by next week and would call me when it was ready to ship.

    I have to take very deep breaths, as I wonder why nothing is falling into place as it should. And I have to devote so much time in my efforts to give Jonathan what he deserves in tribute to his legacy and his beauty.

    It just seems like something should go our way soon.

    MORE ABOUT JON’S MEMORIAL SERVICE

    John inquired at the club about reserving a room, providing beverages and food, and setting it up for video and sound.

    John is the most affable guy you’ll ever meet, and everyone, who meets him, loves him. So, the club will go out of its way to provide us with the best.

    I want to do this to honor Jonathan and to celebrate his miraculous and courageous life. It’s very important to all of us to do this. Gathering together in grief and celebration is a vital part of our grief journey.

    Here’s where it becomes very difficult. Jim will not be able to be present. He asked me why today.

    “Honey, first of all, at this point anyway, you are kind of tied to the house and bed. Secondly, you can’t be in a crowd of 30 or so people. I will be wearing a mask for Jon’s service, maybe even a gown and gloves. I couldn’t bear to bring home any kind of infection to you. And I’m vulnerable, because I’ m tired, stressed and immeasurably grieving over Jon. Plus I have RA.”

    What do I do about this?

    FINALLY

    Jim and I have been in the unnatural position of worrying about outliving Jon and Michael. We have been trying for almost a year to find the opportunity to actually plan for Jon’s needs with a Special Needs trust, as many of you know. I just haven’t had the time to pull that together.

    Jim has had many dreams through the years after Michael passed of Jon alone in a wheelchair at the end of a long street. In my dreams, I see myself watching Jon being mistreated, and I am helpless.

    We don’t have to fear this any longer. Jonathan knew. We know he knew, because Jonathan is very smart and intuitive, like Michael. He wasn’t able to verbally communicate what he understood, but he made it clear to us always, as did Michael, that he saw The Big Picture.

    Another day is over, and night has fallen. I’m taking it a few minutes at a time. I feel like I’m balancing on a trapeze wearing high heels and holding a 1,000 pound pole.

    Once again, we thank you so much for being here for us. We cannot thank you enough. We love you and pray for you all and for your loved ones.

    Love & Light,



    Rose
    Hi Rose,

    John’s photo gift sounds so gorgeous and perfect! This is your funeral for Jon so please, please, please, excuse me if this again sounds insensitive, I'm so sorry, and I’m sure you already know this, but please, please find some way for Jim to participate in a service or memorial for Jon. One of my relatives missed out on a really important funeral because of circumstances nobody could control, and felt completely dejected/left out by missing it. Please don’t put Jim through that. Jim adored Jon. Maybe have him attend via Skype or FaceTime or have a service just for you 2 so Jim feels included in the grieving process. Yes I thought to myself after Jon passed “This is AWFUL. But at the very least Jon won’t die alone in an institution. People like Jon do not live long at all in institutions.” Jon died safe in his own home, in his own bed like many people hope for when they pass. He is very lucky! Yes I could tell Jon was an extremely smart man and let his love for you guide him in his decisions. Same for Michael. Yes! Some ableist people would say people like Jon are forcibly kept alive because of G Tubes etc. Jon was NEVER forced to do anything. If a person like Jon is meant to exit the earthly world they will exit regardless. You gave him a great life many other people would not even attempt to give him. You did that EXACTLY right. Sad that the nurses other patients didn’t live as long. Please continue taking the time to update us when you can!!!

    Donna, your friend’s writing is beautiful! Such a great message!
    Last edited by funnylegs4; 04-15-2019 at 10:26 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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  11. #36
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    Hi Rose,
    Funnylegs4 has a great idea of how to include Jim in Jon's memorial service. One of the young ones from John's family (maybe his daughter?) could be Jim's friend/guide at the service using an Ipad (John will have to check that there is wifi in the building). Someone will have to be with Jim to help him watch at home - Gowned, gloved, masked. That person would use their phone as a receiver for the feed coming from the service.
    John's daughter or whomever is there at the service filming would need coaching to make sure that she understands she IS Jim there - so talk to others so Jim can say hello to everyone and also turn the camera to the altar, speeches, etc. so he can see/hear everything. The person with Jim can facilitate too. Would Nancy do this for Jim?
    It's absolutely doable but does take some planning - but not planning that YOU have to do - this is a young person's job. All you have to do is OK the person to be with Jim and prayers going up that one of Jon's nurses will perform this service for your family. I do hope it works out.
    Sending much love and I'll keep looking for the Angel urn.
    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. #37
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    Quote Originally Posted by Donna Thomson View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Hi Rose,
    Funnylegs4 has a great idea of how to include Jim in Jon's memorial service. One of the young ones from John's family (maybe his daughter?) could be Jim's friend/guide at the service using an Ipad (John will have to check that there is wifi in the building). Someone will have to be with Jim to help him watch at home - Gowned, gloved, masked. That person would use their phone as a receiver for the feed coming from the service.
    John's daughter or whomever is there at the service filming would need coaching to make sure that she understands she IS Jim there - so talk to others so Jim can say hello to everyone and also turn the camera to the altar, speeches, etc. so he can see/hear everything. The person with Jim can facilitate too. Would Nancy do this for Jim?
    It's absolutely doable but does take some planning - but not planning that YOU have to do - this is a young person's job. All you have to do is OK the person to be with Jim and prayers going up that one of Jon's nurses will perform this service for your family. I do hope it works out.
    Sending much love and I'll keep looking for the Angel urn.
    xoxo Donna
    Glad you like my idea Donna!

    Rose,
    Donna is right! I use Skype for my work and film screenings all the time. You can use your desktop on Jim's end to operate Skype. You do NOT need his iPad. I know you had issues with the iPad before. Just have someone download the version that is compatible with your computer if you don't have it downloaded already. It is completely free!!! If Jim is nervous about using Skype just have someone set it up, leave it on, and teach Jim how to click the "answer call" button. All Jim would have to know is what the answer call icon looks like. Someone else can do everything else from any mobile device. Jim can just sit still from home the whole time. Hope it works!
    Last edited by funnylegs4; 04-16-2019 at 10:56 AM.
    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. #38
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    ((((((Hugs to All)))))) ~

    Thank you all so very much for your continuing love, prayers, understanding, support and friendship.

    TUNING OUT

    Our floors needed Swiffering, as I need to try to control the dust around Jim. Jim thought that I was cleaning for Nancyís visit. I assured him that right now worrying about how clean the house is for guests is not on my agenda. This is for Jim.

    I moved on from the living room to Michaelís room, to Jonís room. That is when I turned off my brain and my heart. This needs to be done, and I must do it.

    I opened Jonís curtains and shutters for the first time since last Thursday afternoon.

    Today, I wanted to give Jim a bed bath and shave. He was too tired and needed to sleep. So, I continued on with my preparations. I planned to use Jonís bedside tray table to accommodate the very large plastic basin John brought us. That meant cleaning off everything on Jonís tray.

    In my mind, I repeated, ďThis needs to be done. Youíre going to do it. No emotion, no time for tears and falling apart. You have to do it. Letís do it now.Ē

    I grabbed a kitchen trash bag, and I tossed everything in, acknowledging each thing and how we used it to care for him. I kept telling myself, ďJust do it. Jim needs this tray. Jon wants him to have it. Keep going.Ē

    I went to the window side of Jonís bed and began tossing out wound care treatments. His trache supplies. His suctioning stuff, including the half full suction canister. I pulled out the full bag of trash in his Lakersí trash can. ďKeep going.Ē

    That was enough then. My back is so very sore. I can only do so much at once, and then I must rest. So, I did.

    Then, I removed the Kobe Bryant towel covering his tray and tossed it into the growing basket of laundry against his far wall.

    I cleaned the tray twice with vinegar. I cleaned Jimís new basin with a ton of hydrogen peroxide followed by scalding hot water from the tub (bending down, ouch). I placed the basin and the unopened tubes of bathing gel and shampoo on top of the tray.

    Then, I removed the Christmas towels from the bathroom. More laundry for the basket. I replaced them with the towels Jim and I use in our upstairs bathroom. I made sure that Jimís magazines had a place on the shower door rail.

    Finally, I straightened the cover on Jonís chairbed and fluffed and arranged the pillows, which were still in the same arrangement I used every night to camp out with him, as I left them, when I realized he was gone. It's the first thing I see when I walk into Jon's room, and it's visible from the living room chair. It is a vivid reminder, and it was tormenting me.

    That was as far as I could go today.

    I am (used to be and still try to be) an organized person. I have so much to keep track of that if I am not orderly, I am lost.

    This is chaos in our home, and it is stressful for me for thousands of reasons, but I know myself, and I needed to make order out of this chaos to have the strength for Jimís care.

    I have no time to wallow, to go to the depths of my sorrow and pain, to even cry adequately. I canít relive the trauma of losing Jon, but every second is deeply etched in my being.

    Iíve had to learn to do that, to turn it off, to be available for my boys, when they were in crisis, and now Jim. After nearly 50 years, I have learned to do this. It isnít healthy for me, but it was necessary for Jon and Michael, and it is necessary for Jim.

    Someday, I will fall apart, but now isnít the time.

    JIM'S UPDATE

    With the regular breathing treatments every 4 or so hours, Jim is doing much better.

    Nancy took his blood through his port today, and I finally was able to see what Jim has been going through for 2 1/2 years. She had to flush it twice, but she got good vials.

    Jimís vitals on 3 ltr of O2 are 97, which is great. His BP: 130/68. Heart Rate: 75. Temp: Normal.

    She looked at his urine and said the color wasnít troublesome. She looked at his belly and again said, ďThis is water.Ē His output has been decent.

    She advised me not to change his catheter too often, because the more you change something the greater the likelihood of infection. ďJust let the catheter slide off when itís ready to. Will save you a lot of discomfort.Ē

    She heard rales on his right side and decreased lung sounds on his left side (where the tumor is), but nothing new.

    His bowels are finally normal now.

    She checked the giant bruise on his lower right back. I think this is a pressure bruise from the way he was leaning on that side of his wedge.

    Later, after sheíd left, I convinced Jim to have a bowl of tomato bisque with a sandwich. As he moved his legs and bum around to sit on the edge of the bed, he winced. He said he was sore and having pain. After he finished eating, it was time to head to the bathroom. When he stood up, I noticed a plastic water bottle cap glued to his underside.

    With my gloved hands, I removed and showed it to him: ďFound the cause of your pain. You were sitting on this!Ē

    His bed is like a sea of stuff. Two remotes, a box of Kleenex, used Kleenex, a lone sock, the pulse ox, and every time he stands up, we find something new!

    The coffee table is a pharmacy and a care station, with gloves and scissors, tape, drugs, ointments, more drugs, BP cuff and stethoscope, inhalers, instructions for everything. I organized that as best as I could today too.

    Around the coffee table on the floor are ďbriefs,Ē a stack of breathing treatment meds in small boxes, the Elton gift bag from Johnís sister, which we havenít looked at yet, and other assorted supplies.

    Nancy wondered today, whether Jim should move to Jonís bed.

    Now you know why I canít take my time cleaning up Jonís room.

    O2 CONCENTRATOR/NEW PULMO

    Dr. A ordered it, and a place called late this afternoon, which I will call tomorrow to arrange delivery. Dr. A also referred Jim to a pulmonologist, the same one Dr. K recommended. She has only been in practice for 5 years. Is she going to wave a Harry Potter magic wand over Jim?

    We are replacing D. Hís incredible wisdom and experience with a novice. We will keep an open mind, and weíll meet her and form our opinions thereafter. By we, I mean I will be with Jim, wherever he goes now.

    I believe that this was Jonís gift to us, to his dad, who he adored so much and has missed, because Jim has been too ill to be with him. And, of course, this is Jonís gift to me, because he knows how much I need to help Jim. We have a small home, and he heard us talking. Jon knew.

    MEMORIAL SERVICE AND URNS

    Thank you for your suggestions, funnylegs4 and Donna, to bring Jim to Jon's service/reception via Skype or Face time.

    Our desktop computer is upstairs, and Jim can no longer climb the stairs. That is out. But, I will talk to John, and he and his family are very computer literate. Iím sure that John will find a way. But it will have to be with someone elseís computer/pad/phone, whatever.

    We also have terrible reception in our neighborhood, and itís not because we donít have WiFi. His parentsí house 2 doors down from us had WiFi, and the reception was still terrible.

    I have started a list of what I want included in Jonathanís celebration, but there is so much Iíve yet to fill in. Music, photos, opportunities for everyone to share their favorite memories, some lasting tribute to Jon, like the river stones we all made with one word to describe Michael on them, which surround his pond.

    I need time to pull this together, as I did for Michaelís service, which was beautiful. To write Jonís eulogy. This is so much more than just a gathering. This is honoring a hero.

    Youíve read what today has been like and the days before, so you know that I am constantly doing something other than addressing Jonís celebration, as much as I long to devote all of my attention to it. I am conflicted, naturally, and Iím also feeling a tad pressured about pulling everything together right now for Jonís celebration.

    I cannot do everything at once, and I donít have unlimited energy. Jonís celebration has to be perfect, so it will not occur, until I can focus properly on creating it.

    Much of my time has been consumed with finding the appropriate urns, in addition to ordering condom catheters, nasal cannulas, and coordinating all of Jimís supplies and needs.

    Michaelís bronze urn is unavailable, and there are none even remotely close to it that tell me, ďYes, this is for Jonathan.Ē Right now, that is my first and most important commitment to Jonathan.

    And this is why I have to tune out to be able to keep functioning and serving Jim.

    SUNSET

    While Jim was having his breathing treatment this evening, I opened the top shutters above his bed so we could see the changing colors in the sky together. Jim couldnít see much, so I stood on the hearth at the end of his bed and looked toward the sunset, describing the layers of peach and blue.

    We talked about Jon and Michael, and I shared with him that I am not ready to start planning and preparing Jonís service. He understood completely, because he knows how meticulous I am in planning special events, like Michaelís service and our wedding.

    I donít know what is going to happen an hour from now, tomorrow, or the next day. How can I plan for Jonís service and pick a date? I canít leave Jim for any amount of time at all now. His care is constant. I do not want to leave Jim. He is weak and frail now.

    I donít know how many more sunsets we have.

    Thank you all so much for allowing me to share all of this with you. It is therapeutic for me to let it out.

    Jim has told me several times today, ďJust go write, honey. It will help you. Just go write.Ē

    He knows me so very very well.

    Taking one moment at a time and putting one foot in front of the other to keep moving. Itís all I can do right now.

    We love you and thank you for everything. We 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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  17. #39
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    Rose, I'm sure that needing to keep busy is a blessing just now because it does keep a person from thinking too much, at a time when thinking might just bring on tears. But I'll repeat that I hope that you'll accept any and all offers of help--and reach out and ask for help as well. Your true friends will want to help you at this time. It will make them feel less helpless and forlorn. You are the one who most needs assistance just now. Your friends and family don't need an elaborate service. In fact, they don't need a service at all. I've known of deaths where there was no service or where it was stated that there would be a "service at a later time." That service should be whatever you and Jim feel you're up to dealing with, and forget about trying to please anyone else.

    People who care about you and know you well will understand.

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    Rose, you are putting one foot in front of the other, minute by minute, day by day and that is all you can do right now. Just keep doing what you are doing. Jonathan's service will fall in place and will be as beautiful and meaningful to you as Michael's. Continue to lean on John for right now. He and his family love and care about you and your family. Remember John loved Jonathan too. He did for him as only a brother would. So, in this time of need continue to call on him when you need him.

    You are doing really good. You don't realize it right now, but you really are. Continue to talk to us and get it out. We all care.

    Love,
    Virginia
    Virginia

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