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Thread: Jonathan Received His Wings Today

  1. #61
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    Oh Rose,
    What a sad, final trio of documents. The end of Jon's mortal life. But he will go on and on in your heart and in Jim's. He will go on and forever be remember by so many here and by your dear friends who are not on CN. The thing I notice about my Mom's death is that my relationship with her hasn't stayed still. When I remember something now, it might change with some new understanding. My life experience changes my perception of her and so my memories are enhanced. I haven't forgotten with time - if anything, my memories of her are more vivid with every passing day. She IS alive in me.
    I sent you something in an email just before I read this new post - from me and Tracy. 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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  3. #62
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    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    I knew that you would react to the CP diagnosis listed on Jonathanís death certificate. I completely understand your reaction.

    Through the years, doctors have used CP as a generic category to describe Jonís and Michaelís disabling condition. I know that is an inaccurate category for them. I know that their condition was genetic.

    Their pediatrician diagnosed Michael at 6 months with the same developmental delays as Jon had. He said, ďItís most likely genetic. I recommend that you get genetic testing. Itís probably a recessive gene that you and your spouse both carry.Ē That was 1971.

    The most accurate description for Jon and Michael is as I state in my signature: undiagnosed progressive neuromuscular disease. That disease resulted in developmental delays. Not the other way around.

    Still, it doesnít matter what this piece of paper says. No one will ever really look at it for any reason other than to verify that heís deceased. I know the truth.

    I pray that your friend and his loved ones remain safe.

    Marcie ~

    My heart goes out to you as you deal with all of the ďfirstsĒ after Mikeís passing. And, as you said, we just find our way through them, because we have no other choices. We have to keep moving forward, but that doesnít mean that we are ďgetting overĒ our loss. Weíre just doing what needs to be done.

    That is what Mike wants you to do. That is what Jon and Michael want me to do for their dad. Just keep moving forward and taking care of what needs to be done.

    In my family, I grew up with wakes, funerals and graveside services. For me, that was always quite traumatic. When we found the Living Reefs option, we agreed that this worked well for us. Having Jonís and Michaelís ashes at home with us is comforting to me and Jim.

    You, Nick, Brian, Jonathan and your family continue to be in our prayers.

    Donna ~

    Your deep spiritual connection to your mom is such a blessing, and Iím very glad for you that you have this with her.

    For me to find the spiritual connection with Jonathan, I need to be able to carve out time for meditation and prayer and to follow a path toward him. Jimís needs are intense, and I have to be on top of everything else, so I donít have the moments I need to connect with Jon. To truly grieve for him and reach out to him and listen for him and feel his presence.

    I am struggling with PTSD associated with the trauma of Jonís passing and all of the chaos surrounding his passing. I havenít had time to address any of that trauma in a healing way. Itís just excruciatingly painful. I canít escape it, because we live in our home, where he passed, and everything is a reminder.

    There is also the conflict of letting Jon go and holding onto him. Jon is happy now with Michael, and I rejoice in their freedom in eternal Bliss. Selfishly, I miss Jonís physical presence, so I hold onto all of the physical evidence of him.

    Itís only been 22 days, since Jonathan passed, so Iím still in shock and still doing everything like a robot. Jim is quite ill and dependent. So, I have to keep moving forward.

    While I have hope that Jim can be well enough to have radiation, Iím realistic. How much will that take out of him? He is on 4 liters of O2. He is unstable on his feet, canít walk farther than the bathroom. Itís unrealistic at this point to think that heíll be able to tolerate radiation. I havenít and never will say this to Jim.

    Jim says things to me like, ďWhen the weather warms up, weíll go out and look for a small car to replace the van.Ē And, ďMaybe we could take a drive down to Coronado Islands to look at where our reef will be placed.Ē

    Little pieces of my heart break off every day. I just sweep them up and cast them aside so that I can keep going.

    Thank you all for lifting us up and keeping us in your prayers and sending us healing energy. You may not realize this, but it is true: without you, I would be lost right now. Thank you.

    Our love and prayers to all of you and your loved ones ~

    Love & Light,



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

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  5. #63
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    Default Improbable & Tacitus

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

    John placed bets for us today on the Kentucky Derby. We chose Improbable and Tacitus for Jonathan and Michael.

    Improbable: unlikely, defying the odds

    Tacit: an understanding of something unstated

    Jonathan and Michael defied all of the odds against them, and their longevity was highly improbable.

    While Jonathan and Michael weren’t fully able to communicate their knowledge and awareness verbally, everyone knew that they knew far more than they could convey. That is tacit knowledge.

    In an unprecedented upset, the winner, Maximum Security, was disqualified. Hence, Country House, a complete long shot, won the Kentucky Derby. As a result, Tacitus placed third, and Improbable placed fourth.

    The “under dog” was the victor over the horse expected to win.

    Another reason why we chose Tacitus: he is silver, with a black mane and black and white tail. He isn’t brown, like the other horses. He is different. When we saw Tacitus, we agreed that he was gorgeous and special.

    Jim and I watched all of the pre-Derby coverage and races since Thursday, and we learned about the horses competing in the Derby. It didn’t take long for us to choose Improbable and Tacitus.

    I’m just reporting facts. Make of them what you will.



    Love & Light,



    Rose
    Last edited by Earth Mother 2 Angels; 05-05-2019 at 04:35 PM.
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  7. #64
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    IMG_1081.jpgDaisy watched and loved it too! She barked at WinWinWin!
    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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  9. #65
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    I knew that you would react to the CP diagnosis listed on Jonathanís death certificate. I completely understand your reaction.

    Through the years, doctors have used CP as a generic category to describe Jonís and Michaelís disabling condition. I know that is an inaccurate category for them. I know that their condition was genetic.

    Their pediatrician diagnosed Michael at 6 months with the same developmental delays as Jon had. He said, ďItís most likely genetic. I recommend that you get genetic testing. Itís probably a recessive gene that you and your spouse both carry.Ē That was 1971.

    The most accurate description for Jon and Michael is as I state in my signature: undiagnosed progressive neuromuscular disease. That disease resulted in developmental delays. Not the other way around.

    Still, it doesnít matter what this piece of paper says. No one will ever really look at it for any reason other than to verify that heís deceased. I know the truth.

    I pray that your friend and his loved ones remain safe.

    Marcie ~

    My heart goes out to you as you deal with all of the ďfirstsĒ after Mikeís passing. And, as you said, we just find our way through them, because we have no other choices. We have to keep moving forward, but that doesnít mean that we are ďgetting overĒ our loss. Weíre just doing what needs to be done.

    That is what Mike wants you to do. That is what Jon and Michael want me to do for their dad. Just keep moving forward and taking care of what needs to be done.

    In my family, I grew up with wakes, funerals and graveside services. For me, that was always quite traumatic. When we found the Living Reefs option, we agreed that this worked well for us. Having Jonís and Michaelís ashes at home with us is comforting to me and Jim.

    You, Nick, Brian, Jonathan and your family continue to be in our prayers.

    Donna ~

    Your deep spiritual connection to your mom is such a blessing, and Iím very glad for you that you have this with her.

    For me to find the spiritual connection with Jonathan, I need to be able to carve out time for meditation and prayer and to follow a path toward him. Jimís needs are intense, and I have to be on top of everything else, so I donít have the moments I need to connect with Jon. To truly grieve for him and reach out to him and listen for him and feel his presence.

    I am struggling with PTSD associated with the trauma of Jonís passing and all of the chaos surrounding his passing. I havenít had time to address any of that trauma in a healing way. Itís just excruciatingly painful. I canít escape it, because we live in our home, where he passed, and everything is a reminder.

    There is also the conflict of letting Jon go and holding onto him. Jon is happy now with Michael, and I rejoice in their freedom in eternal Bliss. Selfishly, I miss Jonís physical presence, so I hold onto all of the physical evidence of him.

    Itís only been 22 days, since Jonathan passed, so Iím still in shock and still doing everything like a robot. Jim is quite ill and dependent. So, I have to keep moving forward.

    While I have hope that Jim can be well enough to have radiation, Iím realistic. How much will that take out of him? He is on 4 liters of O2. He is unstable on his feet, canít walk farther than the bathroom. Itís unrealistic at this point to think that heíll be able to tolerate radiation. I havenít and never will say this to Jim.

    Jim says things to me like, ďWhen the weather warms up, weíll go out and look for a small car to replace the van.Ē And, ďMaybe we could take a drive down to Coronado Islands to look at where our reef will be placed.Ē

    Little pieces of my heart break off every day. I just sweep them up and cast them aside so that I can keep going.

    Thank you all for lifting us up and keeping us in your prayers and sending us healing energy. You may not realize this, but it is true: without you, I would be lost right now. Thank you.

    Our love and prayers to all of you and your loved ones ~

    Love & Light,



    Rose
    Hi Rose,

    Thanks for understanding!!! Not trying to bring up bad memories, sorry, but I just found an old thread where you and I discussed the possibility of Jon having Cerebral Palsy and the use of Cerebral Palsy as a generic term here http://www.braintalkcommunities.org/...ss-month-2016? which may help. Apparently in that thread you said a primary care doctor had diagnosed Cerebral Palsy in Jon around 2016 and I had told you that it was possible for your boys to have both the brain damage involved in Cerebral Palsy and a separate genetic neuro condition on top of that. Since your boys were tested in the 1970s and science has changed a lot in 2019 anything is possible as people with CP can still get every other condition the general population can get, Iív seen people with Autism(which is genetic or partly genetic I think) who also have Cerebral Palsy and sometimes doctors canít tell the difference between the 2 conditions in toddlers at first. However I totally agree that I donít think Jon had CP. CP is very unlikely in Jon. Yes Generic labels are indeed slapped on to quickly. Recently during my work with my film screenings a teacher told me she thought fellow teachers should be allowed to try to notice developmental delays and make a guess as to an actual diagnosis of the child but I thought this was extremely disturbing and wrong because the teachers were not medically trained to begin with and there are already a ton of misdiagnosisís going on. Of course teachers should be observant to emotional and physical medical distress in a child to prevent something bad from occurring in a class etc.

    I heard about the disqualification of the original Derpy winner. Good choices for bets. Makes perfect sense to me. Your PTSD after what happened also makes perfect sense. I am so sorry! Of course the traumatic images of that would be burned into your mind.

    Thank you so much for your prayers! My friend and his family are safe so far. Just praying they do not have further complications from the big storm.
    Last edited by funnylegs4; 05-05-2019 at 12:27 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. #66
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    The doctors add the umbrella of CP to Tyler's diagnosis to satisfy the insurance company's need for codes. There is no code for Ohtahara Syndrome or mutation of the SCN2a gene. It drove me nuts for a very long time, but I understood the need to simplify requests for services and benefits by using that code. It's just one more label to add to the many that describe Tyler. The neurologist doesn't even speak of Tyler's multiple seizure types any more. She just says he has an irritated brain and leaves it at that. I've gotten to the point, that as long as he gets what he needs, they can say whatever. It doesn't change anything.

    My heart goes out to you Rose. I know it has to be a struggle just to get through every day, one day at a time. You have so much on your plate. We have lived so long, living minute by minute, hour by hour, day by day, that I don't know how else to live. In many ways, we are very alike. My heart grieves with you, but also rejoices with you that Jon is free, no longer tethered to a bed by a body that has long held him in one place and finally joining his beloved brother. I often pray that the Lord will simply call Tyler home and release him from the daily pain, shrieking, seizures and the autonomic dysreflexia that so dominates our lives and makes Tyler's so miserable. You're torn from desperately wanting your child to stay and yet wanting him released from the pain that you cannot relieve. I often wonder if I will fill guilty for my prayers when the Lord does call him home, or will I feel a sense of relief and rejoice in his new life. I imagine that is pretty much where you are now. A part of you grieves, feels guilt, and yet rejoices. What a tangle of emotions.

    Just know that we are always here, standing with in you, lifting you and Jim up in prayer, and we understand where your heart is. Grieve when you can, rejoice in the little things, hold tight to the precious memories and know you are loved. You have touched and taught so many here with your years of love, devotion and service to your family and this community.
    grandmother of Tyler (24): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

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  13. #67
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    ((((((Hugs to All)))))) ~

    Donna ~

    What a great photo of Daisy! Look at her tail! I just want to hug her all day. Iím sorry her horse didnít win, but it looks like she enjoyed the race.

    funnylegs4 ~

    The doctor, who added the CP label in 2016, is our PCP, who completed Jonís death certificate.

    The specialists, who saw/studied Jonathan and Michael during the 1970s, did not diagnose them with CP. Instead, they believed that their condition was genetic. Genetics werenít advanced enough then to identify the specific genetic problem.

    In the 1980s, genetic testing eliminated several possibilities, including Fragile X. After that, it just didnít matter any longer.

    My only reason to pursue a genetic diagnosis was to help future generations of our family. My niece had a son with similar disabilities, but she declined genetic testing. I offered, she declined. She was content with the diagnosis of CP for her son. Her daughter did not have a disabling condition. I suspect that there is an X link.

    Teachers should not offer medical diagnoses. Teachers do have a responsibility to report any evidence of learning, behavior, or developmental issues to parents, and to recommend testing. The school district is responsible for providing resources. Parents should consult medical professionals based upon the teacherís observations.

    Tamie ~

    Thank you for sharing your astute observation about coding. You are absolutely right, of course. Square pegs donít fit into round holes. This is one way that our medical system fails all of us. But especially those, who have rare conditions.

    How well I understand your anguish over Tylerís ongoing pain and discomfort. Youíre not alone.

    My dear friend, whose son was Michaelís best friend, knew that her son was not going to recover or ever regain the quality of life he once had. He had been in and out of the hospital, then taken to a horrible sub acute care, from which she immediately removed him and brought him home.

    For months she did everything for him, but he was in misery, and she cried to God to give him peace. A few hours later, he passed in her arms.

    Her guilt was immense. As we talked after his passing, we both understood that we can only do so much, and the rest is in Godís hands.

    When I signed Michaelís DNR, the Infectious Disease doc pleaded with me to let him keep trying different antibiotics on Michaelís septic pneumonia. Iíll never forget our encounter in the hallway.

    I calmly said to him, ďEven if we can get this and his other infections under control, we cannot stop his seizures. He is in status. Heís been seizing nearly every day for 22 years, numerous times a day for months lately, and nothing is going to stop that. Nothing. What more can we ask of him? My heart is breaking. I donít want to lose Michael. But, I cannot bear to selfishly allow him to continue to suffer.Ē

    After Jon passed and in the 23 days since, I have traveled the ďWhy didnít I take him to the ER?Ē guilt trip countless times.

    Weíd been here so many times before, I believed we could pull him through again. I was on the verge of taking him to ER several times, with his bag of meds and paperwork ready to go. I had decided that morning that Iíd call an ambulance to take Jon to ER.

    Deep within me was the agonizing thought of Jon having to be on an ambulance gurney, a hard, uncomfortable ER bed, IVs stuck in him, until heíd need a PICC line. Drugs administered, which would trigger seizures. A saline drip, which would fill him with more fluid. Lasix, which would promote seizures. X-rays, CAT scans, tests, tests, tests. Hospital beds that would worsen his wounds. Days, weeks, months in the hospital, as it was before.

    And, I would have to be with Jon nearly 24 hours a day, since Jim was too ill to take the night shift. Jim was too ill to do anything. I was already caring for him intensely. What would have happened to Jim, if I was not with him?

    Still, I fully intended to take Jon to ER that morning.

    I was as prepared as possible to lose Michael. I had 5 days with him after we removed the vent, when he actually rallied.

    I was not prepared to lose Jon. Not even close. I never even imagined that he wouldnít once again amazingly recover. I never imagined that he would pass, before I could follow through on my commitment to take him to ER to give him another chance.

    Now that Jimís condition has worsened, and his dependency upon me has increased 10 fold, I understand why I didnít take Jon to the ER. Jon knew his dad was failing and would need everything I have to care for him.

    And Jon had been happy at home for 7 years, and he probably didnít want to be put through what the hospital would entail.

    As our dear friend said to me that morning, ďJon waited until his dad came home from the hospital to become ill.Ē

    I have always known that things happen for a reason, and that someday, we will understand that reason. It may not be ours to know now, but when weíre in The Light, everything will be crystal clear.

    ďA tangle of emotions.Ē Yes. It truly is.

    Thank you for your loving words of support, Tamie, and your prayers and understanding. You, Tyler, Jerry, and your family are in our prayers. Itís been a long, long road for all of us. But weíre walking it together.

    We give abundant thanks for all of you, who are walking beside us and lifting us up along the way. We are stronger, because of you. Thank you, and our prayers continue for you and your loved ones.

    Love & Light,



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

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  15. #68
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    Tamie and Rose, Out of curiosity what is this “code”?? I have never heard of anything like that. I don’t like that because if parents of babies with CP start seeing false stats saying people died of CP it will freak them out needlessly.

    Rose,
    I’m so sorry about Michael’s DNR and your feelings of doubt over the ER with Jon. I thought Jon had been relatively healthy before his heart stopped. These decisions are never easy and it is hard to get a feel for whether we as people who don’t have conditions such as Jon’s are just assuming “suffering” or seeing actual suffering. I would hope that Michael’s brain was compromised enough by his seizures that his brain could not perceptive pain. My teacher with the stroke said when the brain is experiencing something like that the person often goes numb.

    I hope you don’t mind me asking, I’m curious has your niece’s son had a progression of symptoms???? Is her son still alive? CP does not progress but the aging process of joints is a bit faster in CP. I saw in the other thread that Jon’s food is still in his room? Won’t Gtube food spoil?
    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. #69
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    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    The code, to which Tamie refers, pertains to insurance billing. Insurance companies use codes to classify conditions, treatments, medical supplies, etc. It doesnít actually have anything to do with cause of death.

    But it is used commonly as a generic term by medical professionals, as with our PCP. He used it so that Jon could get the supplies and services he needed. Thatís how it ended up on Jonís death certificate.

    Regarding pain perception ~

    Jonathan and Michael did feel pain constantly, especially as they aged.

    Jon had a rod and pins in his right hip (placed 2005), and his right hip was dust. His legs were scarred with weeping wounds from lymphedema. They were wind swept and couldnít be straightened without terrible pain. His torso was contorted, such that his rib cage had dropped significantly on his left side. That is why turning him was so difficult and painful for him.

    Jonís indwelling catheter was very uncomfortable for him. Thatís why we had to restrain his wrists, so that he wouldnít pull it out. He was also irritated by his trache over the past year. Another reason we restrained his wrists.

    Because Jon and Michael were so incredibly brave, they didnít complain about their pain, except to say, ďOwie,Ē ďHurt,Ē or ďNo.Ē

    Sometimes, Jon would push away our hands (mine, Jimís and Johnís) when we began his turn. ďNo,Ē he would say, as he refused to give up his hands to ease the turning. Our hearts were always broken for him, as we would cajole and soothe him, because he had to be turned.

    Iíve never been intubated, but Jon and Michael were intubated many times throughout their lives. It is truly invasive and uncomfortable. There is no way of verbally expressing your pain or your thoughts with a tube down your throat.

    Every tonic clonic seizure they had involved tensing every part of their bodies. Their pain post-ictally was intense.

    So, yes, they felt and experienced pain for the majority of their lives. As their mother, I felt every second of their pain and wept for them, as I did everything I could to ease their pain and comfort them.

    Regarding my niece ~

    I have been estranged from that part of my family for 35 years. I do not know what happened to my nieceís son.

    Regarding Jonís formula ~

    The formula is in a 1000 cc plastic bag, hanging from an IV pole. It is a symbol of the sustenance Jon received for 10 years. It is the symbol of one of the many important things I did in caring for Jon, and the issues he had, which required us to adjust his feed rate numerous times.

    Removing the formula bag is another step in accepting that Jonathan is physically absent. Removing it reminds me of that horrible morning. He wonít be home again to need his feeding. I continue to check the clock, thinking that itís time to take Jon off or put Jon on his feeding. This is part of the trauma of grieving for me.

    I wasnít concerned about the formula spoiling. Itís in an enclosed bag, and it is a conglomeration of chemicals. I never intended for it to be used again. So I didnít even think about it spoiling.

    When I looked at the bag, I mourned and cried, and remembered our last moments together. I had started his feeding at 3:30 that morning. Itís in his chart.

    But, I removed his feeding bag today. It was wrenchingly painful, but now itís done. One more memory, one more symbol removed.

    I hope Iíve answered all of your questions.

    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. #70
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    The code, to which Tamie refers, pertains to insurance billing. Insurance companies use codes to classify conditions, treatments, medical supplies, etc. It doesn’t actually have anything to do with cause of death.

    But it is used commonly as a generic term by medical professionals, as with our PCP. He used it so that Jon could get the supplies and services he needed. That’s how it ended up on Jon’s death certificate.

    Regarding pain perception ~

    Jonathan and Michael did feel pain constantly, especially as they aged.

    Jon had a rod and pins in his right hip (placed 2005), and his right hip was dust. His legs were scarred with weeping wounds from lymphedema. They were wind swept and couldn’t be straightened without terrible pain. His torso was contorted, such that his rib cage had dropped significantly on his left side. That is why turning him was so difficult and painful for him.

    Jon’s indwelling catheter was very uncomfortable for him. That’s why we had to restrain his wrists, so that he wouldn’t pull it out. He was also irritated by his trache over the past year. Another reason we restrained his wrists.

    Because Jon and Michael were so incredibly brave, they didn’t complain about their pain, except to say, “Owie,” “Hurt,” or “No.”

    Sometimes, Jon would push away our hands (mine, Jim’s and John’s) when we began his turn. “No,” he would say, as he refused to give up his hands to ease the turning. Our hearts were always broken for him, as we would cajole and soothe him, because he had to be turned.

    I’ve never been intubated, but Jon and Michael were intubated many times throughout their lives. It is truly invasive and uncomfortable. There is no way of verbally expressing your pain or your thoughts with a tube down your throat.

    Every tonic clonic seizure they had involved tensing every part of their bodies. Their pain post-ictally was intense.

    So, yes, they felt and experienced pain for the majority of their lives. As their mother, I felt every second of their pain and wept for them, as I did everything I could to ease their pain and comfort them.

    Regarding my niece ~

    I have been estranged from that part of my family for 35 years. I do not know what happened to my niece’s son.

    Regarding Jon’s formula ~

    The formula is in a 1000 cc plastic bag, hanging from an IV pole. It is a symbol of the sustenance Jon received for 10 years. It is the symbol of one of the many important things I did in caring for Jon, and the issues he had, which required us to adjust his feed rate numerous times.

    Removing the formula bag is another step in accepting that Jonathan is physically absent. Removing it reminds me of that horrible morning. He won’t be home again to need his feeding. I continue to check the clock, thinking that it’s time to take Jon off or put Jon on his feeding. This is part of the trauma of grieving for me.

    I wasn’t concerned about the formula spoiling. It’s in an enclosed bag, and it is a conglomeration of chemicals. I never intended for it to be used again. So I didn’t even think about it spoiling.

    When I looked at the bag, I mourned and cried, and remembered our last moments together. I had started his feeding at 3:30 that morning. It’s in his chart.

    But, I removed his feeding bag today. It was wrenchingly painful, but now it’s done. One more memory, one more symbol removed.

    I hope I’ve answered all of your questions.

    Love & Light,



    Rose
    Hi Rose,

    Thank you so much!!! Yes you absolutely answered my questions. I’m so sorry your boys endured such pain! My only knowledge of seizures comes from a lovely woman with epilepsy who told me she had no pain perception or touch perception during the seizure itself but post seizure pain was common. I remember seeing an interview with someone who had been intubated who said it was quite unpleasant because it caused an infection and, a feeling of dehydration, and rawness in his mouth, but definitely preferable to dying by suffocation, trying to breathe. I’m so sorry you had to remove the feed bag. Prayers of comfort to you.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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