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Thread: Jonathan Received His Wings Today

  1. #11
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    Messages of condolence from the CN facebook group:

    Marcie Stark Siciliano
    5 hrs
    I know many of us started on Braintalk in child neurology. I wanted to share that Earth Mother 2 Angels (Rose) her beautiful son Jonathan, gained his angel wings today. He joins his beloved brother Michael in heaven.
    She has been a great support to many of us over the years. If you could please stop over to Braintalk to send Rose your condolences. I know she would greatly appreciate them during this most difficult time for her and Jim.
    10Robin Plowman, Lisa J. Ott and 8 others
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    Kathryn Stone
    Kathryn Stone I'll have to see if I can find my password.

    LaTonya Brunner
    LaTonya Brunner Oh no. Thank you for posting to let us know.
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    Paul Copeland
    Paul Copeland So terribly sad.
    We had been on Braintalk almost from the time it started.
    Could you please either post the braintalk link here or PM me with the link.
    Praying for Rose and the family.
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    Marcie Stark Siciliano
    Marcie Stark Siciliano http://www.braintalkcommunities.org/...hild-Neurology
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    Child Neurology
    BRAINTALKCOMMUNITIES.ORG
    Child Neurology
    Child Neurology
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    Anita Elliott
    Anita Elliott I am so sorry to hear this ��. Prayers for this sweet family.
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    Lisa J. Ott
    Lisa J. Ott My heart aches for her....just read her email. :(
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    Hope Elizabeth Welker
    Hope Elizabeth Welker Oh, no! :'( I am heartbroken for Rose and Jim. Please pass my love along to them.
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    Mary Palmer
    Mary Palmer I am so sorry to hear this. I can only imagine their pain. I haven't been able go sign in there for a long time. I will try again.
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    Vettey Coo
    Vettey Coo Heartbreaking news. The love and honour and respect she showed for her boys was beautiful.
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    Lisa Royalty
    Lisa Royalty I’m so sorry to hear this. He has been so loved and I know Rose will be heartbroken
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    Kristin Keyes
    3 hrs
    I tried to sign up for Braintalk again,but,it won't let me..

    Cindy Lansford
    Cindy Lansford Me too. Me neither.
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    (Note from Donna: Old friends who haven't been here a while can read but they can't post messages so I will continue to copy and paste these from the group on Facebook. Would a moderator have any advice for folks who cannot remember old passwords?)
    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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  3. #12
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    Default Prayers for you and your family Rose

    Dearest gentle Rose,

    Alison and Grant the champ, and I are so sorry and saddened to hear about Jon.

    We will always remember with fondness all your encouraging and uplifting posts about Jon, the challenges he had, and the wonderful and absolutely awesome sacrificial way you always cared for him. He was very brave, and courageous wasn't he. Despite his health issues he always was able to smile and respond lovingly to you.

    We believe that Jon has a resurrected body now, and is in heaven for eternity with Michael, where is there is no pain, no tears, no suffering, but only joy and happiness. You will see them again.

    At the moment you are in terrible sadness, but there will also be times of happy reflection in knowing that you and Jim were the best possible parents that Jon could possibly have had.

    May God bless you and comfort Jim and you and your families and friends at this time.

    With ALL our love and prayers,

    Paul, Alison, and Grant the champ.

    PS. Rose you were always so helpful in giving advice regarding Grant's health, and coming up with suggestions that helped such a great deal.
    Last edited by Paul from Australia; 04-13-2019 at 02:58 AM.

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  5. #13
    Distinguished Community Member andromeda31's Avatar
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    ((((Rose & Jim))))

    I read your email last night and my heart aches for you. I am so sorry for the loss of Jon. I am thinking of you and Jim and praying that loving memories of Jon bring you both peace, comfort and strength.

    Love,
    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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  7. #14

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    Donna just messaged me to let me know.

    I am so very sorry for your loss Rose.

    Jonathan and your and Jims love for him has touched people around the world. Sending you love and strength during this unimaginably difficult time.

    Erin
    Enjoying the excitements of life. Looking forward to what's to come! What a ride!

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  9. #15
    Distinguished Community Member tic chick's Avatar
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    rose...

    i am so sorry to read about jon's death. i had just read that jon had a fever for a day and was constipated and the next thing i read is that he died. how sudden! how painful!

    my sympathy and prayers go out to you and jim and everyone who loved jon.

    i'd like to leave you with a song that always brings me comfort. i know your family always loved music.

    grief is the price we pay for loving and memories must sustain us forever.

    jeannie

    Here's to good women. May we know them. May we be them. May we raise them.
    "The world is a better place when you're barefoot." Mark
    "Don't go there unless you know the way back." TC
    "...there will be an answer. Let it be." Paul McCartney

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  11. #16
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    My dear Rose and Jim,
    Here are more messages from the Facebook CN group:


    Lauren Fordham
    Lauren Fordham So sad to hear this. I too have not been able to log in for a long time. I did not realise Jim had got sick, too, and that Jon had a lot of pain. Please tell them that their Child Neuro family will always love and remember Jon and Michael, and I will hold them close in my heart till they can hold their boys in their arms again.
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    Barb Barton Zorzie
    Barb Barton Zorzie I know that she won't remember me, but please let Rose know that I am standing in the gap for them....
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    Debi Hammond
    Debi Hammond So sad... Rose and Jim are in my prayers
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    Paula Scott
    Paula Scott I am heartbroken to read of Jon’s passing. My love and prayers to Rose and Jim
    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. #17

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    Dear Rose and Jim,

    Thinking of the both of you today. Sending prayers up for the both of you.

    Marcie

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  15. #18
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    My sweet Rose,
    OH NO!!! IíM SO SO SORRY!!!!! Iím sitting here crying with my mouth hanging open in utter shock that Jon suddenly left this earthly world. Iím heartbroken as I felt like I knew Jon in person from your amazing descriptions of him. Beautiful picture of him! I did not believe it was true at first and really hoped I read the post incorrectly. I tried to re read all your recent posts to see if there was anything that could explain his sudden passing like a pre cursor to a cause of death. You and Jim take such fabulous care of Jon I guess I thought he would live forever regardless of his health conditions. This shows us all how precious and fragile life is. I kept having this feeling today that said ďCheck BraintalkĒ.

    Iím so so glad the paramedics did everything they could to try to save Jonís life. The injection in the leg was likely to stimulate Jonís heart muscle. Please take comfort in the fact that you did everything possible. Please NEVER blame yourself. I can NOT even remotely imagine the pain you are going through as Jonís parents but please know I am here for you. You gave Jon the best life. You never gave up on Jon no matter what. Your love is reason Jon lived as long as he did. I donít know why these things happen but I know Jon and Michael are together now and love you with every ounce of their spirits.

    Both of your beautiful sons are going to be watching over you and helping you in every step that comes next. I love you all. My deepest condolences in your time of grief. My prayers always. I hope the stress does not make Jimís symptoms worse. Please let me know if you need anything?
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  17. #19
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    Default The Day After

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

    Thank you all so much for your outpouring of love and prayers for us. Thank you, Donna, for posting the FB condolences. Itís wonderful to hear from so many old friends, who Iíve missed for so long. We are grateful to all of you for surrounding us with love, and we truly feel it and are comforted.

    JIM

    Jim had a difficult night, but thankfully after drinking more water and tea, he began urinating properly. His urine turned from rust to clear. Dr. K prescribed Flomax for Jimís prostate. Thatís not the problem. He was dehydrated.

    Every time Jim peed, I had to change his condom catheter. Of course, his bed is low (itís a futon), so Iím bending over frequently Iím dealing with quite a bit of back pain now, especially after being on the floor with Jon yesterday. But that pain is nothing compared to the pain in my heart and soul. And the pain of watching my wonderful Jim suffer.

    I tried to sleep on Jonís recliner in the living room to be near Jim. He suggested I sleep next to him on the futon. Space is limited, and I have to scoot out of the bed to the end, then walk around the bed in a narrow space littered with slippers and other obstacles. I knew it was going to be a long night with Jim and that I couldnít manage doing that repeatedly.

    I was up and down a lot, but when I tried to sleep, I couldnít. At 4 a.m., just 24 hours after Jon passed, I went to bed. As soon as I climbed in bed, Jim called me, so I ran downstairs to assist him. Back in bed, I cried until I fell asleep. I woke up at 7:45, and I immediately began crying. I know that this is normal and necessary, and if I repress it, I will feel worse.

    PREPARING FOR THE FINAL ARRANGEMENTS

    I tended to Jimís bathroom needs, made him tea and his cereal breakfast with raisins, and organic peaches and pears (diced in pear juice) with coconut milk. No banana today. He scarfed it back, which is a great sign.

    Then, I collected the items I wanted Jon to have for his cremation.

    Since they were babies, I've referred to Michael and Jon as my ďbears.Ē I started a collection of bears, including teddy bears and Native American sculptured bears, and they each received a bear of some kind for Christmas, always matching.

    In 2010, Jon was in ICU near Christmas. I wanted him to have Christmas decorations in his room, so I went to the gift shop, and I found Christmas beanie bears. One for Jon and one for Michael. I chose this bear for Jon to take with him.

    Jon has always loved his ďhankie,Ē which is what he calls the bandanas we originally bought for him to wipe drool. In later years, they just became a comforting thing to hold, and he particularly enjoyed giving us the side eye, when we were watching TV in his room, with a big grin on his face, as we said, ďDonít drop your hankie on the floor, Jon.Ē It became a game, and of course, it always landed on the floor.

    I chose his Ohio State hankie. It was the most important part of game day regalia. He had several of them, as we always gave him a clean hankie after he dropped it.

    We have so many fabulous photos of Jon and Michael together and separately. One of our favorites is from 1991, before we met Jim. We used to have picnics in our backyard under the shade of our huge eucalyptus. Jon always had control of his portable radio. He turned on some rockiní music, and he and Michael began dancing in their wheelchairs. I grabbed the camera. I chose that photo for Jon to hold.

    Finally, this morning, I removed the booklet from Elton Johnís Million Dollar Piano concert DVD. This was Jonís favorite of all of his Elton videos. He always held the DVD jacket and booklet in his hands. And he looked at them, as he did with all of his videos, numerous times while he watched the video. We danced and sang with Elton countless times. His favorite songs are: ďBlue Eyes,Ē because I always sang it to him, as I did to Michael, ďYour Song,Ē same thing, and ďDaniel,Ē in memory of Michael.

    DISCUSSIONS OF A SERVICE FOR JON

    John showed up a little early, and I was just finished getting dressed.

    John told us that his sister was sitting out in front of our house last night at 8 p.m. in her car. She phoned John and asked him if she should knock on our door. John told her we could be sleeping or in the middle of getting Jim to the toilet. She ended up going to John's house for the evening, where they talked about Jon and us and discussed a service for Jon.

    John belongs to the golf course country club and wants to rent a room for a reception for our friends to honor Jon. We held a reception there for Michael prior to his service at the hospital chapel. I'm sure we can't get the chapel for Jon, as Michael's service was an exception to their policy. The chaplains all knew Michael, as they served him during his final hospitalization. Jon hasn't been in the hospital since 2012, and all of those chaplains are gone.

    Of course Jim won't be able to attend the service, so perhaps someone could video it for him.

    Honestly, I'm not in a place at this moment to deal with planning Jon's service. I know that John and his sister and their spouses and kids will do everything. But, I'm still processing Jon's passing, and I'm intensely taking care of Jim. I'm overwhelmed.

    Last night I thought about songs and the many photos I'd like to have as a slide show. John and his wife, and family did all of this when they had their daughter's 16th birthday party at the club. John said today, ďWe've got all of that covered, you just choose the photos and the music, we'll put it together."

    The other pressing matter is finding urns for Jon. I want him to have the same ones that Michael has, but that was nearly 16 years ago, and so far my Google searches ended up with nothing similar. John took photos of Michael's urns and sent them to Zach, the gentleman, who spoke to us at the mortuary. Zach is going to search for them too.

    THE MORTUARY

    En route to the mortuary, we stopped at our pharmacy to pick up a med waiting for Jim and drop off his scripts. Phillip was serving the drive thru window, and he is just so sweet and friendly. They all know us well there, naturally.

    In the process of sorting out Jimís scripts, I told Phillip that Jon passed yesterday. His usually smiling, cheerful face, dropped with sadness. He said he was very sorry and would keep us in his thoughts.

    I went to high school with the owner of this family mortuary established in 1911, when the city was just a few streets. He was unavailable today, although he served us for Michaelís arrangements in 2003.

    We met with Zach, who it turns out is the son of an Ohio State linebacker and a fellow Buckeye. He was wonderful to me, and John was so incredibly helpful and shared and filled in and took notes. We explained our relationship, and I told Zach that Jon lit up every time John walked into his room, and ďwent in for the hug.Ē

    "Jon, who has been missing his brother for nearly 16 years, found another brother in John, and he adored him. And Jim and I have found another son in John.Ē

    We shared so much about Jon, because it is important to us that he knows how very precious and special Jon is.

    Zach had all of Michaelís information, so we just followed that for Jon. Same casket, as the casket company plants a tree in honor of Jon. Same guest book and guest cards. I chose Corinthians 13 for Jonís scripture. It is perfect to describe him, Michael, and our family unit.

    The uncomfortable moment came with the naming of Jonís biological ďfather.Ē Itís the law. I bristled, of course. ďHe abandoned his sons in 1990 and never looked back. He sued me to sell the house for his half, to which he wasnít entitled to put us out on the street. He served me on Christmas Eve for that. I prevailed. I donít know where he is, and he has no right to have any say over the decisions I make for my sons.Ē

    Zach looked at John, then me, ďSo, as far as you know, he may be deceased.Ē

    I looked at John. He nodded ďyes.Ē

    Zach repeated his statement, and I said, ďYes. As far as I know, he may be dead.Ē

    Then, I told Zach about Jim, the worldís most wonderful Dad, and John confirmed that Michael and Jon had only one Dad, an amazing Dad, and his name is Jim.

    Then we told him about Jim and cancer. Zach was visibly moved. He thanked us for sharing so much with him. ďMost people just come in and want to get it over with. But today, I feel the love of your family, the humor, the memories, the story of your journey. Thank you.Ē

    I signed a hundred papers it seemed. Then John and Zach connected. John said heíd take photos of Michaelís urns to send to Zach, who promised to search for them for us. He absolutely understood how close Jon and Michael are.

    John will be responsible for picking up Jonís ashes and bringing in his urns for their transfer. ďDonít worry, Rose, Iíve got it all covered. Donít worry about this.Ē

    Zach ďhalf huggedĒ me twice before we left. I was wearing a mask the whole time, and I explained to him why when we first met. He felt compelled to comfort me, and I appreciated that very much. He said gently, ďIím going to go to Jonathan now and place these things in his hands. He knows youíre with him, and he is with you."

    BACK HOME

    Jim was fading, since he has had so little sleep, and he has fatigue from low WBC and platelets. I really want him to get a platelet transfusion. How low does it have to be to qualify? Nancy will draw his blood next Tuesday, as she spoke to Dr. K yesterday evening.

    Dr. K said ďNO`Ē to an indwelling or intermittent catheter. ďThatís a sure avenue for infection, and we want to avoid it. Condom catheter is okay as long as it is changed frequently." Which it is.

    John took photos of Michaelís urns and sent them to Zach and promised to stay in touch.

    Have I mentioned how wonderful John is? I guess you all know that by now anyway. Please give thanks for John and his family in your prayers, because they are our support network now. Weíve been through a lot together for about 25 years. And we could not ask for a better family. I need to contact Johnís sister, who sat in front of our home last night, to arrange a visit with her and her husband, who called today and talked to Jim. Gowns, masks, gloves, brief visit.

    They want to serve us. We are blessed.

    For all of you, who wish that you could be here to help us, please know that you are being represented by this loving family. If Jim could eat food prepared by others, weíd be fed delicious meals every day. They fed us during Michaelís illness and after his passing.

    JIMíS CARE

    Meanwhile, Jim needed a good amount of assistance today once I returned. Itís quite the run to get from futon to bathroom, while pushing an O2 concentrator. We have to be fast. Thankfully, Jimís constipation is abating. His urination is still good, so lots of condom cath changes.

    We opened his new inhaler, learned how to use it, and he didnít feel anything. Instructions state that you may not, but donít take a second puff. Always read the instructions.

    I cleaned all of his nebulizer parts with vinegar and rinsed with water. Read the instructions. Heíll have a breathing treatment tonight. I want to space out Advair and breathing treatments. Itís a lot of drugs.

    I am concerned about his cognition. He asked me this afternoon if heíd had breakfast. He told me that he took MOM, but he didnít. He is sleep deprived, but it wouldnít be any different, likely worse, if he was in the hospital Cancer unit. Every time heís discharged heís worse than when he went in.

    He asked me whether a spaghetti dinner would be okay for him to eat. I said, ďOf course. Any meal I make for you will be okay. But truthfully, honey, Iím not up to standing in the kitchen cooking right now. Iím so sorry.Ē

    I can only do so much, and Iím feeling my limit. Iím busy every moment, which doesnít allow me time to process Jonís passing and fully mourn for him.

    JONíS ROOM

    Today, I walked through Jonís room and tried to look at it from the viewpoint of the firefighters, paramedics, police, CSI, who thoroughly scoured them.

    They saw sports banners on the wall, the poster of Einsteinís face with his quote ďGreat spirits always encounter violent opposition from mediocre minds.Ē A Native American poster above his bed: "Earthly Reverence: Every Living Thing Is Our Relative.Ē His Certificate of Achievement award, an autographed photo from Tommy Lasorda, and from The Doobie Brothers. They saw Jonís bowling trophies.

    His stacks of videos and CDs. His collection of bears. His bobbleheads.

    They also saw the organized mess of things necessary to meet Jonís needs on both sides of his bed. All of his wound care treatments, gauze, Optifoam pads, cleansers. His suction machine half full, suction catheters, sterile water, syringes, oral swabs for his thrush, tape, alcohol wipes, anything you can imagine in an ICU room.

    His IV pole and feeding pump. His mattress and bed. The wrist restraints hanging off of his bed. They didnít ask about that, but if they had, we have dozens of people, who would testify as to why they were necessary to protect Jon and how we apologized to him every time we applied them.

    In Michaelís room and somewhat in Jonís room, it is still Christmas, because I havenít had time to put the stuff away and bring out the Easter decorations. Tied to Jonís lift is a balloon John gave Jon on his 49th birthday in November. It is sill inflated.

    In Michaelís room, they saw our family, and all of the angels and Michaelís urns, and his display cabinet, which holds the ashes of our dear pets, our cat, Canoe, and our cocker spaniel, Bonnie and other special gifts, as well as the shirt Michael wore after he passed.

    I sat down on Jonís chairbed for the first time since he passed, and I thought about cleaning it and removing all of the medical stuff and replacing it with wonderful memories. I also thought that at some point, Jim might need Jonís bed. I want to make it possible for him to move in there easily. We wonít need to rent a hospital bed. I will have to wash the mattress cover and disinfect Jonís room.

    I donít know what to do with the massive amount of supplies we have for Jon. Cases of formula. Our garage is packed full with boxes of his supplies. I donít know whether I could donate them somehow. Again, I want to be sure I keep any supplies Jim might need.

    I have a list of 6 places I need to call to inform them of Jonís passing.

    Jim and I are now officially ďretired.Ē

    Thank you so much for reading my lengthy update. You are my therapists now. You are helping me by letting me getting it all out.

    We love you all and thank you so much for being here for us. We pray for you and your loved ones everyday.

    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. #20
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    Quote Originally Posted by Earth Mother 2 Angels View Post
    This quote is hidden because you are ignoring this member. Show Quote
    ((((((Hugs to All)))))) ~

    Thank you all so much for your outpouring of love and prayers for us. Thank you, Donna, for posting the FB condolences. It’s wonderful to hear from so many old friends, who I’ve missed for so long. We are grateful to all of you for surrounding us with love, and we truly feel it and are comforted.

    JIM

    Jim had a difficult night, but thankfully after drinking more water and tea, he began urinating properly. His urine turned from rust to clear. Dr. K prescribed Flomax for Jim’s prostate. That’s not the problem. He was dehydrated.

    Every time Jim peed, I had to change his condom catheter. Of course, his bed is low (it’s a futon), so I’m bending over frequently I’m dealing with quite a bit of back pain now, especially after being on the floor with Jon yesterday. But that pain is nothing compared to the pain in my heart and soul. And the pain of watching my wonderful Jim suffer.

    I tried to sleep on Jon’s recliner in the living room to be near Jim. He suggested I sleep next to him on the futon. Space is limited, and I have to scoot out of the bed to the end, then walk around the bed in a narrow space littered with slippers and other obstacles. I knew it was going to be a long night with Jim and that I couldn’t manage doing that repeatedly.

    I was up and down a lot, but when I tried to sleep, I couldn’t. At 4 a.m., just 24 hours after Jon passed, I went to bed. As soon as I climbed in bed, Jim called me, so I ran downstairs to assist him. Back in bed, I cried until I fell asleep. I woke up at 7:45, and I immediately began crying. I know that this is normal and necessary, and if I repress it, I will feel worse.

    PREPARING FOR THE FINAL ARRANGEMENTS

    I tended to Jim’s bathroom needs, made him tea and his cereal breakfast with raisins, and organic peaches and pears (diced in pear juice) with coconut milk. No banana today. He scarfed it back, which is a great sign.

    Then, I collected the items I wanted Jon to have for his cremation.

    Since they were babies, I've referred to Michael and Jon as my “bears.” I started a collection of bears, including teddy bears and Native American sculptured bears, and they each received a bear of some kind for Christmas, always matching.

    In 2010, Jon was in ICU near Christmas. I wanted him to have Christmas decorations in his room, so I went to the gift shop, and I found Christmas beanie bears. One for Jon and one for Michael. I chose this bear for Jon to take with him.

    Jon has always loved his “hankie,” which is what he calls the bandanas we originally bought for him to wipe drool. In later years, they just became a comforting thing to hold, and he particularly enjoyed giving us the side eye, when we were watching TV in his room, with a big grin on his face, as we said, “Don’t drop your hankie on the floor, Jon.” It became a game, and of course, it always landed on the floor.

    I chose his Ohio State hankie. It was the most important part of game day regalia. He had several of them, as we always gave him a clean hankie after he dropped it.

    We have so many fabulous photos of Jon and Michael together and separately. One of our favorites is from 1991, before we met Jim. We used to have picnics in our backyard under the shade of our huge eucalyptus. Jon always had control of his portable radio. He turned on some rockin’ music, and he and Michael began dancing in their wheelchairs. I grabbed the camera. I chose that photo for Jon to hold.

    Finally, this morning, I removed the booklet from Elton John’s Million Dollar Piano concert DVD. This was Jon’s favorite of all of his Elton videos. He always held the DVD jacket and booklet in his hands. And he looked at them, as he did with all of his videos, numerous times while he watched the video. We danced and sang with Elton countless times. His favorite songs are: “Blue Eyes,” because I always sang it to him, as I did to Michael, “Your Song,” same thing, and “Daniel,” in memory of Michael.

    DISCUSSIONS OF A SERVICE FOR JON

    John showed up a little early, and I was just finished getting dressed.

    John told us that his sister was sitting out in front of our house last night at 8 p.m. in her car. She phoned John and asked him if she should knock on our door. John told her we could be sleeping or in the middle of getting Jim to the toilet. She ended up going to John's house for the evening, where they talked about Jon and us and discussed a service for Jon.

    John belongs to the golf course country club and wants to rent a room for a reception for our friends to honor Jon. We held a reception there for Michael prior to his service at the hospital chapel. I'm sure we can't get the chapel for Jon, as Michael's service was an exception to their policy. The chaplains all knew Michael, as they served him during his final hospitalization. Jon hasn't been in the hospital since 2012, and all of those chaplains are gone.

    Of course Jim won't be able to attend the service, so perhaps someone could video it for him.

    Honestly, I'm not in a place at this moment to deal with planning Jon's service. I know that John and his sister and their spouses and kids will do everything. But, I'm still processing Jon's passing, and I'm intensely taking care of Jim. I'm overwhelmed.

    Last night I thought about songs and the many photos I'd like to have as a slide show. John and his wife, and family did all of this when they had their daughter's 16th birthday party at the club. John said today, “We've got all of that covered, you just choose the photos and the music, we'll put it together."

    The other pressing matter is finding urns for Jon. I want him to have the same ones that Michael has, but that was nearly 16 years ago, and so far my Google searches ended up with nothing similar. John took photos of Michael's urns and sent them to Zach, the gentleman, who spoke to us at the mortuary. Zach is going to search for them too.

    THE MORTUARY

    En route to the mortuary, we stopped at our pharmacy to pick up a med waiting for Jim and drop off his scripts. Phillip was serving the drive thru window, and he is just so sweet and friendly. They all know us well there, naturally.

    In the process of sorting out Jim’s scripts, I told Phillip that Jon passed yesterday. His usually smiling, cheerful face, dropped with sadness. He said he was very sorry and would keep us in his thoughts.

    I went to high school with the owner of this family mortuary established in 1911, when the city was just a few streets. He was unavailable today, although he served us for Michael’s arrangements in 2003.

    We met with Zach, who it turns out is the son of an Ohio State linebacker and a fellow Buckeye. He was wonderful to me, and John was so incredibly helpful and shared and filled in and took notes. We explained our relationship, and I told Zach that Jon lit up every time John walked into his room, and “went in for the hug.”

    "Jon, who has been missing his brother for nearly 16 years, found another brother in John, and he adored him. And Jim and I have found another son in John.”

    We shared so much about Jon, because it is important to us that he knows how very precious and special Jon is.

    Zach had all of Michael’s information, so we just followed that for Jon. Same casket, as the casket company plants a tree in honor of Jon. Same guest book and guest cards. I chose Corinthians 13 for Jon’s scripture. It is perfect to describe him, Michael, and our family unit.

    The uncomfortable moment came with the naming of Jon’s biological “father.” It’s the law. I bristled, of course. “He abandoned his sons in 1990 and never looked back. He sued me to sell the house for his half, to which he wasn’t entitled to put us out on the street. He served me on Christmas Eve for that. I prevailed. I don’t know where he is, and he has no right to have any say over the decisions I make for my sons.”

    Zach looked at John, then me, “So, as far as you know, he may be deceased.”

    I looked at John. He nodded “yes.”

    Zach repeated his statement, and I said, “Yes. As far as I know, he may be dead.”

    Then, I told Zach about Jim, the world’s most wonderful Dad, and John confirmed that Michael and Jon had only one Dad, an amazing Dad, and his name is Jim.

    Then we told him about Jim and cancer. Zach was visibly moved. He thanked us for sharing so much with him. “Most people just come in and want to get it over with. But today, I feel the love of your family, the humor, the memories, the story of your journey. Thank you.”

    I signed a hundred papers it seemed. Then John and Zach connected. John said he’d take photos of Michael’s urns to send to Zach, who promised to search for them for us. He absolutely understood how close Jon and Michael are.

    John will be responsible for picking up Jon’s ashes and bringing in his urns for their transfer. “Don’t worry, Rose, I’ve got it all covered. Don’t worry about this.”

    Zach “half hugged” me twice before we left. I was wearing a mask the whole time, and I explained to him why when we first met. He felt compelled to comfort me, and I appreciated that very much. He said gently, “I’m going to go to Jonathan now and place these things in his hands. He knows you’re with him, and he is with you."

    BACK HOME

    Jim was fading, since he has had so little sleep, and he has fatigue from low WBC and platelets. I really want him to get a platelet transfusion. How low does it have to be to qualify? Nancy will draw his blood next Tuesday, as she spoke to Dr. K yesterday evening.

    Dr. K said “NO`” to an indwelling or intermittent catheter. “That’s a sure avenue for infection, and we want to avoid it. Condom catheter is okay as long as it is changed frequently." Which it is.

    John took photos of Michael’s urns and sent them to Zach and promised to stay in touch.

    Have I mentioned how wonderful John is? I guess you all know that by now anyway. Please give thanks for John and his family in your prayers, because they are our support network now. We’ve been through a lot together for about 25 years. And we could not ask for a better family. I need to contact John’s sister, who sat in front of our home last night, to arrange a visit with her and her husband, who called today and talked to Jim. Gowns, masks, gloves, brief visit.

    They want to serve us. We are blessed.

    For all of you, who wish that you could be here to help us, please know that you are being represented by this loving family. If Jim could eat food prepared by others, we’d be fed delicious meals every day. They fed us during Michael’s illness and after his passing.

    JIM’S CARE

    Meanwhile, Jim needed a good amount of assistance today once I returned. It’s quite the run to get from futon to bathroom, while pushing an O2 concentrator. We have to be fast. Thankfully, Jim’s constipation is abating. His urination is still good, so lots of condom cath changes.

    We opened his new inhaler, learned how to use it, and he didn’t feel anything. Instructions state that you may not, but don’t take a second puff. Always read the instructions.

    I cleaned all of his nebulizer parts with vinegar and rinsed with water. Read the instructions. He’ll have a breathing treatment tonight. I want to space out Advair and breathing treatments. It’s a lot of drugs.

    I am concerned about his cognition. He asked me this afternoon if he’d had breakfast. He told me that he took MOM, but he didn’t. He is sleep deprived, but it wouldn’t be any different, likely worse, if he was in the hospital Cancer unit. Every time he’s discharged he’s worse than when he went in.

    He asked me whether a spaghetti dinner would be okay for him to eat. I said, “Of course. Any meal I make for you will be okay. But truthfully, honey, I’m not up to standing in the kitchen cooking right now. I’m so sorry.”

    I can only do so much, and I’m feeling my limit. I’m busy every moment, which doesn’t allow me time to process Jon’s passing and fully mourn for him.

    JON’S ROOM

    Today, I walked through Jon’s room and tried to look at it from the viewpoint of the firefighters, paramedics, police, CSI, who thoroughly scoured them.

    They saw sports banners on the wall, the poster of Einstein’s face with his quote “Great spirits always encounter violent opposition from mediocre minds.” A Native American poster above his bed: "Earthly Reverence: Every Living Thing Is Our Relative.” His Certificate of Achievement award, an autographed photo from Tommy Lasorda, and from The Doobie Brothers. They saw Jon’s bowling trophies.

    His stacks of videos and CDs. His collection of bears. His bobbleheads.

    They also saw the organized mess of things necessary to meet Jon’s needs on both sides of his bed. All of his wound care treatments, gauze, Optifoam pads, cleansers. His suction machine half full, suction catheters, sterile water, syringes, oral swabs for his thrush, tape, alcohol wipes, anything you can imagine in an ICU room.

    His IV pole and feeding pump. His mattress and bed. The wrist restraints hanging off of his bed. They didn’t ask about that, but if they had, we have dozens of people, who would testify as to why they were necessary to protect Jon and how we apologized to him every time we applied them.

    In Michael’s room and somewhat in Jon’s room, it is still Christmas, because I haven’t had time to put the stuff away and bring out the Easter decorations. Tied to Jon’s lift is a balloon John gave Jon on his 49th birthday in November. It is sill inflated.

    In Michael’s room, they saw our family, and all of the angels and Michael’s urns, and his display cabinet, which holds the ashes of our dear pets, our cat, Canoe, and our cocker spaniel, Bonnie and other special gifts, as well as the shirt Michael wore after he passed.

    I sat down on Jon’s chairbed for the first time since he passed, and I thought about cleaning it and removing all of the medical stuff and replacing it with wonderful memories. I also thought that at some point, Jim might need Jon’s bed. I want to make it possible for him to move in there easily. We won’t need to rent a hospital bed. I will have to wash the mattress cover and disinfect Jon’s room.

    I don’t know what to do with the massive amount of supplies we have for Jon. Cases of formula. Our garage is packed full with boxes of his supplies. I don’t know whether I could donate them somehow. Again, I want to be sure I keep any supplies Jim might need.

    I have a list of 6 places I need to call to inform them of Jon’s passing.

    Jim and I are now officially “retired.”

    Thank you so much for reading my lengthy update. You are my therapists now. You are helping me by letting me getting it all out.

    We love you all and thank you so much for being here for us. We pray for you and your loved ones everyday.

    Love & Light,



    Rose
    Hi Rose,

    Thank you so much for keeping us updated on Jim and your grieving process. Please continue to keep us updated! Please continue to vent as needed. For Jon’s unused supplies that you don’t need I would suggest contacting some disability organization or medical organization even a disability rights organization might know a medically complex person that needs it. Definitely hold on to anything you or Jim need medically. Now that you are sadly “retired” how will that effect Jim’s medical care? Just asking out of concern. Just an idea but: would you like to have an "online" service for Jon with all of us on the forum? I remember some of us talking about such an idea. Prayers!
    Last edited by funnylegs4; 04-13-2019 at 10:16 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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