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Thread: Jonathan Received His Wings Today

  1. #71
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    ((((((Hugs to All))))))~

    Thank you very much for your prayers.

    There are times when I feel like I could melt into a sobbing heap and never get up. Generally, I try to have a positive attitude about everything, but I am having great difficulty embracing positivity now. I am struggling with depression and anxiety. I have to overcome it, because Jim's care is constant. I am digging deep into my coping tool box.

    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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  3. #72
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    Ahhhh Rose, my heart breaks for you. I surround you in my love and I send you my energy just to keep going. I cannot imagine how hollow, sad, worried, exhausted you must feel. I am imagining your boys in God's arms these days. I hope that vision gives you comfort too.
    Love, Donna xoxo
    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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  5. #73
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    Our prayers are constantly with you. Gentle hugs from North San Diego. One breath at a time, one hour at a time, one day at a time. Hang on.
    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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  7. #74
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    ((((((Hugs to All))))) ~

    It has been 23 days, 4 Fridays, an eternity and like it was just a few hours ago, since Jonathanís passing.

    Dozens of times every day, I walk on the perimeter of the rug in Michaelís room, where I last held Jonathan. Numerous times a day, I enter Jonís room to find something to help Jim, or to fold laundry, as itís the only place with enough space to spread out the laundry on his chairbed.

    On Thursday, I spoke to the nursing agencyís pharmacy tech about Jimís port draw supplies. We also discussed returning Jonís feeding pump and giving back Jonís formula and spikes to the pharmacy, since I have no way of disposing of them. Harold, the tech, is so kind and compassionate. I told him that I would ask John to put the cases in the garage on Monday, and then Wednesday, we can schedule the pick up. Tuesday is out, because Nancy will be here for Jimís port draw.

    Yesterday, I submitted my final invoice on line to Regional Center as a vendor for Jonathanís care. Iíve been vendored for Jonathanís and Michaelís care since 1999.

    When I saw the greyed out dates from April 13 to April 30, my heart sank. Usually, I click on ďPopulate allĒ with the daily hours for the month. This time, I manually filled in each day from April 1 to April 11. I did not claim time for April 12. I had to check mark a box for ďService TerminatedĒ and choose the date on which the service was terminated.

    Twenty years of service. I had to advocate to become a vendor for my boys and fight for appropriate reimbursement.

    Of course, I finished our tax returns, prior to Jonís passing, thankfully, but itís only been a few weeks, and now I am thinking about how I will do our 2019 tax returns. We are no longer self employed.

    I need to contact IHSS about my invoices since February. They are so difficult to reach, so Iíve been avoiding those calls.

    I also need to recontact the supplier of Jonathanís O2 concentrator and tanks to return them.

    Our cupboards are filled with Jonís unused seizure meds. I donít know what to do with them for safe disposal. But every time I open the cupboard door, there they are.

    Itís just a never ending parade of ďFinals,Ē which I have to work through with some semblance of normalcy. How can I even think about healing, when I am continuously confirming Jonathanís death and ending everything we did for him?

    This morning, I tossed out the faded flowers from two truly magnificent arrangements we received right after Jonís passing. I had placed the arrangements on the patio table, as I was concerned that they were irritating Jimís respiratory system. Both arrangements had ceramic angels in them.

    Another bouquet, which weíd received a week ago is still maintaining fairly well. I freshened it, and placed the ceramic angels on each side of the vase. One of the angels is a bowl, with two cherubs on the outside. In that, I placed 4 red Euorpena roses from our front patio.

    Everything is filthy in our backyard, and now that weíre not getting rain any longer, our plants are parched. So, I watered the plants and hosed down the patio furniture, the patio cover, and the statues around Michaelís pond.

    Itís still a mess, but itís better than it was. Looking out our windows at its disheveled and forlorn appearance was heightening my depression. I had to do something.

    Itís only been 23 days and 4 Fridays since Jonathan left us. I still donít have the luxury of grieving properly for Jonathan, because every day is filled with Jimís intense needs, and keeping the wheels grinding with our home and responsibilities.

    How I ache for his strong hugs, his precious smile, those soulful big blue eyes, his laughter, his teasing, dancing with him, taking care of his every need, and watching everyone, who met him, fall in love with him.

    Repress. Repress. Repress.

    I am the needle stuck in a groove on a scratched vinyl record.

    Thankfully, after 11 days, I seem to be ďoverĒ my ďcold.Ē Iím really grateful, because it was exhausting me.

    Thank you for listening and allowing me to deposit my daily grief upon your laps. Youíre my therapists. I just need to get it out, so it doesnít simmer inside me. Thank you so much.

    Our prayers are with you and your loved ones, and we 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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  9. #75
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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))))) ~

    It has been 23 days, 4 Fridays, an eternity and like it was just a few hours ago, since Jonathan’s passing.

    Dozens of times every day, I walk on the perimeter of the rug in Michael’s room, where I last held Jonathan. Numerous times a day, I enter Jon’s room to find something to help Jim, or to fold laundry, as it’s the only place with enough space to spread out the laundry on his chairbed.

    On Thursday, I spoke to the nursing agency’s pharmacy tech about Jim’s port draw supplies. We also discussed returning Jon’s feeding pump and giving back Jon’s formula and spikes to the pharmacy, since I have no way of disposing of them. Harold, the tech, is so kind and compassionate. I told him that I would ask John to put the cases in the garage on Monday, and then Wednesday, we can schedule the pick up. Tuesday is out, because Nancy will be here for Jim’s port draw.

    Yesterday, I submitted my final invoice on line to Regional Center as a vendor for Jonathan’s care. I’ve been vendored for Jonathan’s and Michael’s care since 1999.

    When I saw the greyed out dates from April 13 to April 30, my heart sank. Usually, I click on “Populate all” with the daily hours for the month. This time, I manually filled in each day from April 1 to April 11. I did not claim time for April 12. I had to check mark a box for “Service Terminated” and choose the date on which the service was terminated.

    Twenty years of service. I had to advocate to become a vendor for my boys and fight for appropriate reimbursement.

    Of course, I finished our tax returns, prior to Jon’s passing, thankfully, but it’s only been a few weeks, and now I am thinking about how I will do our 2019 tax returns. We are no longer self employed.

    I need to contact IHSS about my invoices since February. They are so difficult to reach, so I’ve been avoiding those calls.

    I also need to recontact the supplier of Jonathan’s O2 concentrator and tanks to return them.

    Our cupboards are filled with Jon’s unused seizure meds. I don’t know what to do with them for safe disposal. But every time I open the cupboard door, there they are.

    It’s just a never ending parade of “Finals,” which I have to work through with some semblance of normalcy. How can I even think about healing, when I am continuously confirming Jonathan’s death and ending everything we did for him?

    This morning, I tossed out the faded flowers from two truly magnificent arrangements we received right after Jon’s passing. I had placed the arrangements on the patio table, as I was concerned that they were irritating Jim’s respiratory system. Both arrangements had ceramic angels in them.

    Another bouquet, which we’d received a week ago is still maintaining fairly well. I freshened it, and placed the ceramic angels on each side of the vase. One of the angels is a bowl, with two cherubs on the outside. In that, I placed 4 red Euorpena roses from our front patio.

    Everything is filthy in our backyard, and now that we’re not getting rain any longer, our plants are parched. So, I watered the plants and hosed down the patio furniture, the patio cover, and the statues around Michael’s pond.

    It’s still a mess, but it’s better than it was. Looking out our windows at its disheveled and forlorn appearance was heightening my depression. I had to do something.

    It’s only been 23 days and 4 Fridays since Jonathan left us. I still don’t have the luxury of grieving properly for Jonathan, because every day is filled with Jim’s intense needs, and keeping the wheels grinding with our home and responsibilities.

    How I ache for his strong hugs, his precious smile, those soulful big blue eyes, his laughter, his teasing, dancing with him, taking care of his every need, and watching everyone, who met him, fall in love with him.

    Repress. Repress. Repress.

    I am the needle stuck in a groove on a scratched vinyl record.

    Thankfully, after 11 days, I seem to be “over” my “cold.” I’m really grateful, because it was exhausting me.

    Thank you for listening and allowing me to deposit my daily grief upon your laps. You’re my therapists. I just need to get it out, so it doesn’t simmer inside me. Thank you so much.

    Our prayers are with you and your loved ones, and we give thanks for the blessing you are in our lives.

    Love & Light,



    Rose
    Hi Rose,

    Your posts reminds me of a song, unfortunately the name escapes me but the lyrics are

    I’m doing everything for the first time again but without you,
    I pretend I’m okay but it aches inside,
    There’s gotta be a better way then just getting by,


    PLEASE DON’T REPRESS! I will tell you the part about filling in the vendor hours up to April 11th broke my heart into tiny pieces. As for the medication google “medication disposal for [insert area]” Don’t flush it! Of course you knew that I'm sure. Great photo of Jon!
    Last edited by funnylegs4; 05-11-2019 at 05:09 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. #76
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    My dear Rose,
    I am thinking of you today. This morning when all the world is saying "Happy Mother's Day." I will say it to you because you are and always will be the most amazing mother - you inspire and teach us all. I am a better mother for knowing you.
    Sending love and gratitude to you today,
    Donna xox
    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. #77
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    Default Melancholy Mother's Day

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

    funnylegs4 ~

    Thank you for the lyrics. Let me know if you remember the song, as I'd like to hear it in its entirety.

    I have to repress all of the pain of losing Jonathan, because I must be strong for Jim. Grief is very exhausting. Tears contribute to my nasal congestion, which I've finally seemed to conquer for now at least. If I start crying again, I won't be able to breathe or sleep.

    Donna ~

    I hope that you had a lovely Mother's Day. Did you visit Nick?

    This was not a happy day for me. I woke up several times during my brief sleep, vividly recalling everything that happened the morning Jonathan left us.

    As soon as my feet hit the floor, I'm at work. Jim's breathing treatment, brief change, communicating about the few hours we were separated. I took a short walk to clear my head. Then it was breakfast for Jim. Bathroom. Meds. Tea. Gatorade. Toast and Jam. Breathing treatment. He slept on and off.

    As usual, he asked, "Have you heard from anyone today?"

    I told him yes, and he asked what each person had to say. I replied, "It's Mother's Day."

    Jim was crestfallen. "Oh, no. Honey, I'm so sorry. I had no idea it was today. I don't even know what day it is until you tell me. I'm so sorry."

    We don't talk about Jonathan. It's too painful and difficult. I can't cope, and Jim doesn't know how to help me.

    THis is my first Mother's Day without Michael and Jonathan, and the void I feel is enormous and indescribable. How I miss them in every possible way, while I strive to reach a place of peace so I can connect spiritually with them. It isn't happening, because my grief is too raw, too traumatic, and I'm constantly caring for Jim.

    I can't help thinking about the what if's. What if Jon was hospitalized, and I had to be there with him, not at home taking care of Jim? Would I have been able to care for Jon and Jim intensely and thoroughly at home, given their decline in health? Did Jonathan make room for Jim?

    I look at the many photos of Jonathan and Michael everywhere in our home, and my heart breaks. Did I do the best I could for them? I feel like a failure, certainly not like an "amazing Mom."

    Of course, I rejoice that Jonathan and Michael are together, free of their physical vessels, in Bliss. But, I have devoted my entire adult life to caring for them, and I am now coping with our physical separation. It's now 24 days since Jonathan's passing, and I can't possibly be expected to find happiness or peace in my memories, when my memories are the last time I held Jonathan on the floor of Michael's room.

    I can't allow myself to sink further into depression, because Jim needs me. I can't talk with Jim about my depression, because it upsets him. He knows, and he understands, but he moves on. He's fighting for his life, and every breath he takes. And that's difficult, to not be able to talk to the world's best Dad about losing Jon and the trauma we experienced. I don't want to fail Jim too.

    Honestly, I don't know where I am. I'm all over the place, in every respect. Thankfully, I do know that this is not unusual for grieving parents immediately following the loss of their child. I just have to get through it and stay strong for Jim.

    Please be patient with me. I'm trying to process so much, and it is overwhelming. Thank you all for your love, prayers, and continuing support as we travel this very difficult journey. We love you, and we pray for you and your loved ones.

    Love & Light,



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

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  15. #78
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    Rose - I saw the post and knew, without reading any further. My heart goes out to you, I am crying right now s it is always a shock when a loved one pass's. He is with the The Lord now and is now free from the earthly constraints that caused him so many problems = I hope you can find some kind of comfort to you in that even though the sense of loss is overwhelming, he will ALWAYS be with you in Spirit. You and your family are in my prayers.
    Blessings
    Alex44
    AKA Skypilot Steve
    PS Take care and be strong - I have been where you are and know the agony - Take comfort in the fact that he is at peace - Hang in there one day at a time - It will get better in time, How long, I wish I could say, It is not an easy passage, But I have known you on this forum a long time, So I know you are strong and will keep on, since Jim will need you more then ever. Try, and I still do it, not to play the what if game - it will make you feel worse and As far as I can see, You are Supermom, Wife,Woman all rolled into one.
    Blessings
    Skypilot Steve
    Last edited by alex44; 05-12-2019 at 11:54 PM.

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  17. #79
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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)))))) ~

    funnylegs4 ~

    Thank you for the lyrics. Let me know if you remember the song, as I'd like to hear it in its entirety.

    I have to repress all of the pain of losing Jonathan, because I must be strong for Jim. Grief is very exhausting. Tears contribute to my nasal congestion, which I've finally seemed to conquer for now at least. If I start crying again, I won't be able to breathe or sleep.

    Donna ~

    I hope that you had a lovely Mother's Day. Did you visit Nick?

    This was not a happy day for me. I woke up several times during my brief sleep, vividly recalling everything that happened the morning Jonathan left us.

    As soon as my feet hit the floor, I'm at work. Jim's breathing treatment, brief change, communicating about the few hours we were separated. I took a short walk to clear my head. Then it was breakfast for Jim. Bathroom. Meds. Tea. Gatorade. Toast and Jam. Breathing treatment. He slept on and off.

    As usual, he asked, "Have you heard from anyone today?"

    I told him yes, and he asked what each person had to say. I replied, "It's Mother's Day."

    Jim was crestfallen. "Oh, no. Honey, I'm so sorry. I had no idea it was today. I don't even know what day it is until you tell me. I'm so sorry."

    We don't talk about Jonathan. It's too painful and difficult. I can't cope, and Jim doesn't know how to help me.

    THis is my first Mother's Day without Michael and Jonathan, and the void I feel is enormous and indescribable. How I miss them in every possible way, while I strive to reach a place of peace so I can connect spiritually with them. It isn't happening, because my grief is too raw, too traumatic, and I'm constantly caring for Jim.

    I can't help thinking about the what if's. What if Jon was hospitalized, and I had to be there with him, not at home taking care of Jim? Would I have been able to care for Jon and Jim intensely and thoroughly at home, given their decline in health? Did Jonathan make room for Jim?

    I look at the many photos of Jonathan and Michael everywhere in our home, and my heart breaks. Did I do the best I could for them? I feel like a failure, certainly not like an "amazing Mom."

    Of course, I rejoice that Jonathan and Michael are together, free of their physical vessels, in Bliss. But, I have devoted my entire adult life to caring for them, and I am now coping with our physical separation. It's now 24 days since Jonathan's passing, and I can't possibly be expected to find happiness or peace in my memories, when my memories are the last time I held Jonathan on the floor of Michael's room.

    I can't allow myself to sink further into depression, because Jim needs me. I can't talk with Jim about my depression, because it upsets him. He knows, and he understands, but he moves on. He's fighting for his life, and every breath he takes. And that's difficult, to not be able to talk to the world's best Dad about losing Jon and the trauma we experienced. I don't want to fail Jim too.

    Honestly, I don't know where I am. I'm all over the place, in every respect. Thankfully, I do know that this is not unusual for grieving parents immediately following the loss of their child. I just have to get through it and stay strong for Jim.

    Please be patient with me. I'm trying to process so much, and it is overwhelming. Thank you all for your love, prayers, and continuing support as we travel this very difficult journey. We love you, and we pray for you and your loved ones.

    Love & Light,



    Rose
    Rose,
    It took me forever to figure out which song it was but here it is https://youtu.be/d9wWW9tSEGM It's called "Seven Days Of Lovely" and my friend used to sing this to her miscarried baby when the baby went to be with God. The lyric portion I referenced is at 1:20 . I'm not sure if the singer meant it as a grief song or breakup song but I felt it fit you and your wonderful boys. Another song that brought my friend great comfort in her grief for her baby was this one https://www.youtube.com/watch?v=2SKEp-H0Eqs Hope these help somehow! Do what you feel is right but know you have to let some grief out as a vent or it will destroy you. I'm sure Jon and Michael send you Mother's Day love from above. The What Ifs are natural to ask but we can not take back the past, only accept the present. You are NOT a failure!!!! Do not worry about asking for patience from me. Please be patient with me if I say or do something unhelpful though! My prayers continue.
    Last edited by funnylegs4; 05-13-2019 at 11:45 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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  19. #80
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    Default About Parental Grief

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

    alex~

    Thank you so much for your kind words and prayers. I pray for peace and comfort every day, and I am comforted in knowing that Jonathan and Michael are reunited and someday, we will all be together again.

    funnylegs4 ~

    Thanks for sharing the song. I think it's a break-up song, but the lyrics are very similar to how I'm feeling. Thank you too for your continuing prayers.

    ABOUT PARENTAL GRIEF

    This month, it will be 16 years, since Michael passed. I am still grieving for him. I will always be grieving for him and now Jonathan. I will never get over losing them, but I will learn to be at peace with my grief.

    Not long after Michael passed, I joined 3 on line discussion forums for grieving parents. From hundreds and hundreds of grieving parents, primarily Mothers, I learned that parental grief is unlike any other grief we experience. Nothing compares to the intensity and depth of parental grief.

    For 3 years, I wrote a monthly on line column for grieving parents focusing on the common threads we all share. Someday, I hope to pull it all together in book format.

    What I'm going through now is typical, expected, and a natural response to losing my child. I will likely remain in shock and have PTSD for at least a year, or for however long I live. I will struggle with feelings of guilt, failure, and what if's, even though I know intellectually that it is nonproductive. I know that I can't change the past, but I still cling to it, because Jon was alive in the past.

    I know that he is in the Best Place, but I still want him here on Earth with me. I cared for him in every respect for 49 years and 5 months. I am lost without him. I will continue to look at the clock and think that it's time for his meds or his formula. I will think that I hear him cough, drop his DVD holder on the floor, call my name, or an alarm is beeping in his room.

    Every time I walk into his room or open his closet, a piece of my heart will break.

    I still have to give back his cases of formula and his feeding pump, as well as his O2 concentrator and tanks. His closet is filled to the brim, literally. All of his cabinets and cupboards are packed full. I have to empty all of this and dispose of or give away all of it. He has baseballs, small footballs, a huge collection of caps, flags, assorted game day regalia.

    In the garage, boxes full of supplies. We have 4 wheelchairs.

    I asked our pharmacy today what I should do with Jon's seizure meds, and he said something about taking it to the Sheriff's office. I can't do that!

    So, I have many tasks to complete, as I grieve for Jonathan. And very little time to accomplish them, with Jim's intense needs. So, I will be surrounded by all of these parts of Jonathan's Earthly life, until I have the time to approach these tasks.

    My entire life revolved around Jonathan and Michael. Even after Jim came into our lives, Jon and Michael were our life, our everything.

    Every square inch of our home and our neighborhood holds memories of our life here. Now, when I walk down the driveway to start my morning walk, in my mind, I see the mortuary van, the two officers standing at attention as Jonathan was placed inside the van, and watching the van drive away.

    I cannot erase these memories or train my mind to ignore them. The best I can do is address them in the moment, then move forward. Otherwise, the pain would be so powerful, that I could easily become dysfunctional. I can't allow that to happen, because Jim needs me.

    To do that, I embrace your love, prayers, and ongoing kindness, understanding, and support. I can't thank you enough or adequately convey my appreciation.

    Blessings upon you all ~

    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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