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Thread: I'll See You In My Dreams

  1. #11
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    I listened to all three songs. The boys had good taste, but I must admit I was most excited about hearing George Harrison's "I'll See You In My Dreams". He did a good job. Beautiful post.

    Hope you get sleep tonight.

    Hugs,
    Virginia
    Virginia

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  3. #12
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    ((((((Hugs to All)))))) ~

    Thank you, Virginia. Another poignant song in the Concert for George is Ringo Starr’s rendition of “Photograph.” Now, I cry twice as much, when I hear it.

    https://www.youtube.com/watch?v=yvWgGZtZ5m0

    Jonathan and Michael loved all kinds of music. They had both Live Aid concerts, Concert for Knebworth, and Elton John collections on DVD. When MTV first came on the air, it was on our TV all of the time.

    Before we met Jim, I took Jonathan and Michael to three Doobie Brothers’ concerts. The first one, we were backstage after the concert and met some of the Brothers. The second one, we were ON STAGE as they performed (in the wings).

    The third concert was at The Hollywood Bowl, a “farewell concert.” Backstage was too crowded, so two of the Brothers came out to our seats (the place was empty by then). Our friend stayed with Jon and Michael, while I walked out to them to greet them.

    When Patrick Simmons asked me, “You take care of them all by yourself?,” I replied, “Yes, with the help of the Doobie Brothers to keep us moving and strong.” Pat was teary eyed, put his arm around my shoulder and hugged me.

    They sat down with Jon and Michael, chatted with them and thanked them for being fans. Pat held Michael’s hand and said it was cold, so he rubbed his hands over Michael’s to warm them. Then, I was teary eyed.

    These experiences were thrilling for Jonathan and Michael. I’m so grateful to our friend, who was the Doobie’s stage manager at the time, for coordinating all of those incredible experiences for them.

    We were big Garth Brooks fans, when it was all Garth all the time in the 90s. For Michael’s slide show during his Celebration of Life service, we played “The River.” Should we ever be able to have a service for Jonathan, we will play “The River.” In fact, I think it should be at Jim’s and my services too.

    https://www.youtube.com/watch?v=a1sSFLFYllY

    There is so much music in our lives, which are perfect to describe our journey. It’s difficult to hone them down to a few.

    I will just add this song, which has helped me so much in the past 16 years and the last 58 days. I Believe, by Diamond Rio:

    https://www.youtube.com/watch?v=5Qb5HmyHTaA

    So, now after finding these songs on YouTube, and listening to them, I have had a bit of a weeping fest, which is necessary, healthy, and therapeutic.

    When Jim sees me, he’ll say, “You’ve been crying. Let’s talk about it.” I’ll just tell him the song titles, and he’ll understand.

    Thank you, Virginia, and all of our wonderful friends here, for walking beside us, loving and praying for us. We love you and keep you in our prayers, sending you healing, positive energy.

    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. #13
    Distinguished Community Member nuthatch's Avatar
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    Dearest Rose,
    I'm just catching up reading your posts tonight. You and Jim have been on my mind. I am so glad to read that Jim is doing better. Thank you for sharing. You are such an eloquent writer I feel I know you although we have never met. The depth of your love for your family touches something deep within in my soul.

    I am a believer that things appear before us as a sign, message, or comfort from departed loved ones. Often these subtle occurrences are not recognized right away but become clear later.
    Today my husband came in with a beautiful red tail hawk feather he found in our back yard. Tonight I read your post about the hawk visiting Michael's fountain.
    Coincidence? I don't think so.
    Hugs to you both.
    Joan

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  7. #14
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    ((((((Joan)))))) ~

    Nope. Not a coincidence.

    Here's what I believe: Everyone we know and love, Jonathan and Michael know and love. They know where to direct their energy, their love and light. They are boundless, not constrained by the physical realm. We can't be in two places at once on Earth, but when we're free in the spiritual realm, we can be in thousands of places at once.

    Treasure that red tail hawk feather. Use it in your crafts, or give it to Tula. There may be a lesson for her there.

    Thank you so much for keeping us in your thoughts and for your kindness. We are honored that our journey has touched you spiritually.

    We will meet someday, I'm sure of this. I have no doubt that you were among the many friends in my dream.

    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. #15
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    Default Sleep, Dreams, Grief

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

    Now that Jim has improved and has some independence, I am sleeping more than I have for decades. The other day, Jim commented that I look less stressed. I just laughed, because the level of my stress is off of the charts. I offered, "Perhaps you mean more rested, because I am sleeping more?" Yes, that is what he meant.

    After Jonathan passed, I started the habit of sitting in his recliner to be near Jim to help him change his briefs or go to the bathroom with O2. I have continued that habit, even though those circumstances have changed. I'm usually wiped out and fall asleep for an hour to 1 1/2 hours. If Jim doesn't fall asleep too, he observes me. He says that I've stopped being furtive, mumbling and crying during that napping time.

    I'm in bed by midnight, sometimes later, depending upon whether Jim needs a breathing treatment. My prayers take at least a 1/2 hour. I generally wake up from a dream at 5:30 a.m., and I don't return to sleep usually. I turn on my heating pad for my back, pray, and plan the day's activities. I usually start my day at 7:00, if Jim's awake.

    This is a drastic change from the schedule I kept to care for Jonathan. I'm now getting up at about the same time I was going to bed then.

    My sleep is deeper now, so I am dreaming more. I don't know what I've been dreaming about after I wake up, with the exception of three dreams I've had about Jonathan and Michael. Details are often so fuzzy, unfortunately. The dream I most remember was so lovely. Jim and I dressed Jonathan and Michael in their jammies, and we all cuddled up on a big bed and watched a movie.

    I just pray that my sweet Angels will continue to visit me in my dreams, because it brings me comfort and reassurance.

    Fire truck and ambulance sirens pierced through the afternoon quiet as they drove up our community's main street. I keep expecting them to be for Esther, who is in her 90s and has been ill with 24 hour home care for many years. But they didn't come down our street.

    Of course the sound of the sirens and engines triggers my PTSD, and all of the images flood through my head. It used to just be images of Michael, now, of course, I relive Jonathan's passing.

    I told Jim, and he's at a loss for words. What can he or anyone say to help me not have this reaction? Really, nothing, except what Jim said, "I'm so sorry for all you're going through."

    While that helps tremendously, it doesn't block out any of those images or the pain in my entire being. I just tell myself, "Don't go there," and sometimes I can divert my attention to something else.

    At least I know that everything, which I'm experiencing, is typical for grieving parents. Nothing, which is happening to me, is out of the ordinary. I don't need medication, an intervention, or counseling. I am well-versed at grieving deeply and continuing to function in the real world.

    I am not denying my grief. I'm just attempting to control it, so that I can care for Jim and our home.

    No matter how broken my heart is, life goes on.

    Thank you all so much for embracing us with your love and prayers, and for walking beside us on our journey. We love you and pray for you and your loved ones.

    Love & Light,



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

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  11. #16
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    Rose, I know you are in deep pain, but I still think you are overall doing so well. It will take years for the deep grief to subside, but all those years you will be going forward without realizing it. You will never get over it, but it will cease to haunt you the way it does now. It just has to for you to survive, and you are a survivor if I have ever known one in my life. That saying of "what doesn't kill you will make you stronger" is you. You have grown strong in your grief. I know you can't see it now, but you are one amazing lady. You grief and yet you offer solace to others who are suffering. Maybe that part of you is because of Michael and Jonathan. You learned empathy from these two remarkable and brave young men. Maybe all four of you were brought together for a purpose much higher than what we know now.

    I hope you get some restful sleep.
    Virginia

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  13. #17
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    You are a mom who lost her son, Rose. You will grieve as you need to, in whatever ways and for however long.

    I'm so sorry the sound of first responders is such a trigger for you.

    I've heard that beta blockers can help with PTSD, although that was a long time ago, and I don't know where research has gone with it now more recently.

    I'm glad you are sleeping more, I'll bet even the drastic change of schedule is a huge adjustment to make. Having looked after your boys as their caregiver for so much of your life, I wonder if that 'way of being' is difficult to shrug off, and if you wake with immediate thoughts of worry that you missed doing something or need to look in on them. I wonder if your dreams might be trying to process some of this most basic adjustment of how you've needed to function for so long, and now the loss of that need.

    Even that dramatic shift can have huge effects. Even night nurses who are put on days are affected by this circadian rhythm change. This has the added component of such a change to the care you're no longer needing to provide in addition to "who" you were, your sons' care provider.

    I wouldn't be surprised if you also might be experiencing symptoms of shock as well with such a dramatic shift, that's not even considering your grief.

    My heart goes out to you and to Jim. I'm glad you have each other. You may not speak about what you are both going through, but just knowing it is a shared experience can help, I hope. You each understand without words.

    Love and strength to you, Rose.
    Last edited by SuzE-Q; 06-26-2019 at 07:12 AM.
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    Per Mike Weins: "...the admin/mod team doesn't have to provide a forewarning/warning/mention about altering a members post. It doesn't matter if they fix a link, remove a link, fix a typo, or whatever...."

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  15. #18
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    ((((((Hugs to All)))))) ~

    Virginia ~

    Thank you so much.

    I do know that the pain will be less raw and searing in time. It's just the getting through it to reach that point, which is stressful.

    Jonathan and Michael taught me everything about love, compassion, forgiveness, courage and life. I have been strong for them, as they needed my care and advocacy. I am being strong for Jim now for that same reason.

    I do believe that the four of us were brought together for a higher purpose. Jonathan and Michael have certainly changed the people, who have met them and cared for them. My hope is that by sharing our story, we are teaching and helping others.

    We are so grateful for the love and support we receive from everyone, as we share our story, and we learn so much from all of you.

    I'm thinking of and praying for you, Virginia, as you prepare for another grief journey. I'm here for you, dear friend.

    SuzE-Q ~

    Thank you so much.

    Jim and I are talking more about Jonathan and sharing our grief. The other day, as we were looking at his photo on the coffee table and talking about our memories of him, Jim began recalling his last moments with Jon, and how peaceful he was, smiling lovingly at his dad. Jim and I both began crying and hugged.

    Since Jim used to take the night shift with our boys and sleep in the day, I know well how messed up the system can be with that schedule. For at least 6 months, before Jonathan passed, I was spending the entire night in his room with him. Occasionally, I would nap for 20-30 minutes, and that isn't healthy either. I wasn't getting any quality sleep, even in the 2-3 hours I had when I went to bed at 6 a.m.

    Until Jim recently stabilized, I was doing the same thing for him, except I was in Jon's recliner in the living room with Jim.

    I remember when John picked me up at the hospital the morning after Jim was admitted for dehydration (5 days after Jon passed). It was 6:30 a.m. He asked if I'd be able to get some sleep, and I laughed, "This is my bedtime."

    For whatever reason, I've been able to manage with this sleep disruption for the majority of my life, and now my body is thankful for some solid, restful sleep lasting at least 4, sometimes 5, hours.

    I try to make the adjustments gradually. Many times, Jim would tell me to go to bed at midnight, so he could stay up all night with Jon. But Jim was ill, and I knew that was too much for him. I also told him that if I got out of my rhythm, I'd have trouble getting back into it.

    My concern with taking any medication to help with my stress, grief, depression, PTSD is that if it takes that away, what else goes with it? If the bad memories are blocked out, are the good memories gone too?

    Everywhere I turn in our home, memories of Jonathan's passing are there. No drug is going to make that go away. I just put out the trash bins on the street awhile ago, and there I was, standing where the mortuary van had parked. When I walked to the mailbox, there I was, where the officers stood beside me as Jon was lifted into the van. There is no escape from it.

    The only way out is through, so I must find ways to deal with these memories and allow myself to feel my feelings.

    Because, as you said, I am grieving for my beloved son.

    And, yes, I look at the clock and think that it's time for Jon's meds, food turning off or turning on, bath, wound care ... it is endless. I even think about coordinating with John to turn Jonathan. After 49 1/2 years of caring for him, I can't stop those thoughts.

    Today, as Jim and I were watching the family of rufus sparrows flitting about and bathing in Michael's waterfall, I told Jim that I want to create a memorial garden for Jonathan. We both agreed that the best location would be in the deck planter outside of Jon's bedroom.

    I'm going to begin planning how I want it to look, and what I want in it. It's been a mess for years, with an original peace rose, which has gone wild. I want it completely cleaned out, with fresh soil built up in the trough. I want to plant a small, graceful tree, flowering succulents, and have a solar driven water feature.

    I can't do any of this on my own, so I will hire help, perhaps our gardeners. Our entire backyard needs re-landscaping, which means concrete. That is just too large of a project for us to do. But Jonathan's garden is a small project, and I feel that Jim and I will find healing there, as we do in Michael's waterfall garden.

    Don't ask me how I'm going to accomplish this! This is what I need to help me heal ~ planning and creating a memory garden for Jonathan.

    There's my verbose response!

    My prayers are with you SuzE-Q, and we thank you so much for your hugs and love.

    We love 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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  17. #19
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    Default Angels Watching Over Us

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

    This afternoon, while I was making lunch, Jim went to the bathroom. I heard him talking softly, but I couldn’t understand what he was saying. As I turned the corner, I saw the light was out, and he wasn’t in the bathroom. “Where are you?” I called out to Jim.

    “I’m in Jon’s room.” There he sat on Jon’s chairbed, “I’m talking to Jon and Michael.”

    “Oh, okay, honey. I’ll give you your space.” I returned to the kitchen.

    I didn’t listen, as I felt he needed to have a private chat with our boys.

    REMEMBERING TOGETHER

    When he left Jon’s room and entered Michael’s room, he stopped at their Urn Table. I joined him then.

    He picked up the enlarged photo of him sitting between Jon and Michael in Zion National park, 1993.

    We recalled our day. Hiking up an impossibly steep hill pushing our boys in their chairs. German tourists coming down from the summit warned us, “You won’t make it all the way, and coming down will be treacherous.” We turned around and headed down to the lodge. A gentle rain began, so we dashed into the gift shop, where I found the Native American wedding vase we used in our ceremony the following year.

    We had a magical, wonderful two week vacation, our one and only.

    Then Jim picked up the other enlarged photo of me between our boys at the Knights of Columbus Fair for special needs children and adults, 1992. We had just met Jim, and we weren’t “dating.” He wasn’t there for this event. Jon and Michael had a great day at this fair, and it is one of our best memories.

    “Look how young we all were then,” Jim chuckled.

    Leaning my head on his arm, I said, “We’ll all be young again someday together.”

    Jim then began admiring their urns. “I just love Jon’s urn. It really suits him. Like Michael’s suits him. It’s amazing how different artists can create the same scene, almost exactly. Our warriors. They sure were and still are.”

    I suggested that I’d try to find out the meaning of all of the symbols on the urns. I don’t know why I hadn’t thought of that before.

    Jim glanced around Michael’s room and said that I did a good job of cleaning and organizing it. It was so cluttered with Christmas stuff. It’s open and airy now.

    MESSENGERS

    After lunch, I heard a hawk’s call as I was cleaning up the kitchen. Not on Michael’s pond, so I scoured the trees. Suddenly two hawks flew right toward our window lifting up just as they reached the edge of the roof.

    “Hello, my sweet boys. Thank you. Mommy loves you. I miss you.”

    For several mornings, I have heard the hawk’s call on my walk. Only once did I spot one sitting in a tree, behind a home, which is our model. I stopped and spoke to the hawk, who sat there majestically. He looked to be a youngster. After a couple of minutes, he flew over my head to his next destination.

    The message is: We are watching over you.

    POETRY AND LYRICS

    I have written a few poems for Jonathan, and last night, I wrote lyrics about our unit, the four of us. I imagined Elton writing the music and singing it. In my head, it sounded glorious. It’s very cathartic, when words flow and come easily, as well as satisfying creatively.

    For me, it’s a process of figuring out how I can connect words to describe an indescribable experience. What words are worthy of illustrating the depth of my love and my loss?

    Hundreds of songs and poems have been written by others, which touch my soul and express my feelings and pain, struggle, heartache, hopefulness, and belief that life goes on and on and on and on.

    But, how do I convey it? How do I get it out of me?

    And let me clarify: I could never write a song in the caliber of Elton’s music and voice. But he was a constant presence for Jonathan and Michael, especially Jonathan, and I just wanted to imagine him singing it.

    It’s all therapy.

    Thank you all for your love, prayers, for reading and caring about us. We love you and pray for you and your loved ones.

    Love & Light,



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

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  19. #20
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    Default The Journey To Finding Jonathan's Pendant


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

    In 2003, a couple of weeks after Michael’s Celebration of Life Ceremony, my Uncle Jim visited to give me a special gift, which he shopped for and chose for me. Not my aunt, him.

    A delicate gold necklace and a gold initial M pendant with an angel clinging to the side of the M.

    Aside from cleaning the necklace and pendant, this treasured gift has been around my neck for 16 years. It’s the only necklace I wear.

    My Uncle Jim, who is only 7 years older than I am, and who is closer to being my brother, now has Alzheimer’s. He doesn’t remember me or our boys nor the thousands of ways he helped us.

    After Jonathan passed, I began searching for the same pendant with a J. I found many J gold pendants, but none of them matched Michael’s M. Every few days, I would try a new search to no avail.

    A few days ago, I had a dream about my Uncle Jim. He was as I remember him, sharp, witty, sweet, loving, kind. He said to me, “Keep looking.”

    I did, and I found it. It’s referred to as “vintage,” because it was made in 2000. It may be used, but that’s fine. So is my engagement/wedding ring. I chose to believe that it belonged to a woman, who had a long and loving marriage. And, I have.

    Jonathan’s J was delivered yesterday. I was so excited to open it, and it is exactly what I was searching for. It is sparkling new. Like Michael’s, it has notches in it, so it glints, when it catches the light.

    I cleaned the chain and Michael’s M, and then I added Jon’s J to the chain. However, both charms on the same chain means one obscures the other. So, today, I cleaned my other gold chain, and now I have two necklaces. The chain lengths are ideal. They both show up perfectly.

    This means so much to me, it’s indescribable. Just as I wanted Michael and Jonathan to have the same urns, I wanted to wear the same style of Michael’s initial for Jonathan.

    Instead of visiting me in my dream, Jon and Michael sent Uncle Jim.

    Growing up together, I called him Jimmy and still do, and I’m the only one on Earth now, who still does. In fact, I have known him longer than anyone on Earth, as all of our elders have passed.

    We had a nurse to tend to Jon and Michael at our wedding, who had provided respite care for us several times. We didn’t have time with all of the preparations to tend to them. Nevertheless, Jimmy sat between them during the wedding and made sure that they were okay.

    Before the wedding, Jimmy gave me a beautiful crystal heart necklace, which belonged to his mom, my grandma, who had passed two years earlier. We cried, and he hugged me. “If anyone deserves happiness, it’s you, Rose. I’m so glad you and Jim found each other. The boys have a dad now, and you have a strong man to help you.”

    When the boys were in the hospital, Jimmy would show up to support me, as a single mom, and to remind the boys that they had a loving male role model.

    The day we extubated Michael, Jimmy was there beside me and Jim and several of our friends, as we prayed over Michael, read scripture, hugged him, held his hands, loved him.

    When Jim and I stepped up to the podium for Michael’s eulogy, Jimmy sat beside Jonathan, holding his hand, wiping his drool, hugging him. We didn’t ask him to do this. He got up from his wife and daughters in the pew behind ours and sat next to Jonathan.

    I could go on and on about all of the wonderful ways that Jimmy has helped us and loved us.

    For many years during college football season, Jimmy would call me during the OSU half time to talk about the game. We had such good laughs together. Those calls became fewer and fewer.

    The last time I spoke with Jimmy, he called me on a weekday afternoon. That was 2015. He was rambling, and he was taking lots of walks down memory lane with me. I could tell that something was amiss.

    Then he began crying, and he said he was so sorry for the difficult life I’d been given and all of the problems the boys had had and the struggles we endured.

    I tried to comfort him, by reassuring him, “You were there with us every step of the way. I was never alone or afraid, because you were there for us. Please don’t cry. In so many ways, we are very blessed.”

    When I learned of his Alzheimer’s diagnosis, I was and still am devastated.

    Now, he visited me in a dream, thanks to Jonathan and Michael, who adore him, so that I could have this beautiful matching J pendant.

    Hmmm … it seems I have described how much this means to me, after all.

    Thank you all so much for walking beside us on our journey, and for your love, prayers, and continuing support. We love you and pray for you and your loved ones.

    Love & Light,



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

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