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Thread: Jonathan Received His Wings Today

  1. #101
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    Donna is so right in that now you have each other. When the grief becomes overwhelming you can turn to one another and talk it out. Both of you have obviously not been doing that very well, in order to spare the other, but now you can talk and talk when you want to and just have quiet time together when you are tired of talking.

    Also, in both your own way's you now know that you did say goodbye to Johnathan and that must be a wonderful feeling. I agree that I feel he just went to sleep, which is the most wonderful of all ways to leave. Maybe he was ready.
    Last edited by Virginia; 05-25-2019 at 01:21 PM.
    Virginia

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  3. #102
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    Virginia and Donna ~

    Thank you so much. I will reply to your wonderful posts soon. Today, I had a rather overwhelming day, which I wanted to share with all of you. So, I've been occupied with that and wrote a post about it. Here it is ~


    This afternoon, for the first time since Jonathan passed, Jim and I talked in detail about that morning. Jim said that he had something, which he wanted to clarify with me.

    While he isn’t positive of the time, he believes it was about 3:00 a.m. that morning, when he got up to go the bathroom. I was lightly asleep on Jon’s chairbed, after checking on Jon. Jim came into Jon’s room to check on us.

    When Jon saw Jim, Jon reached out his hand to his dad with a sweet smile. As always, Jim took Jon’s hand, kissed his forehead, told him he loved him, and then said, “Try to go back to sleep now, son.”

    At 3:30, I was up with Jonathan, and I turned on his formula. He reached out to me and smiled. I hugged him, kissed him, told him how much I love him and how beautiful he is. His SATS were 85, so I increased his O2 to 3 liters. His heart rate was 105, which was much lower than it had been. I thought he was improving.

    About 4:15, I hugged and kissed Jon and said, “Mommy is just going to rest over here on the chairbed for a few minutes. I love you.”

    When I got up at 4:40 to check on Jon, he was lifeless. I put the pulse ox sensor on his toe. Dashes. No numbers. I ran out to Jim screaming, “Jon isn’t responding! Oh Jim! Oh dear God!”

    I called 911 as Jim started CPR.

    Of course, it was painful for us to recall these details, but we both agreed that we had had our moments with Jonathan, before he passed. He was calm, responsive, smiling, loving us.

    Jim said, “Jonathan went to sleep. Isn’t that how we all hope we will go?”

    And, we observed that Jon was smiling, just as Michael was. Peaceful, finally at rest after so many years of struggle to survive this Earthly life.

    TRAUMA/PTSD/GUILT

    From there, Jim and I covered the trauma that followed with the firefighters, police, CSI, and mortuary attendants. Jim was in his bed during most of this, as he was quite ill. I said, “I don’t know how I sounded to you, when I was on the floor with Jonathan. Was I wailing? Did that upset you?”

    “You sounded like a Mother grieving over her beloved son. Of course it upset me that I couldn’t be in there with you. But I knew you needed all of that time, and more, with Jonathan. And you had to let it all out. Everyone here understood. They all felt so sorry for you. I could see the sadness on their faces.”

    I commented that the police especially looked at everything in Jonathan’s and Michael’s rooms. And that there are photos of them all over our home and evidence of our love and care for them.

    Then, I finally spilled the beans with Jim that I am depressed (he knows), that I feel guilty (he knows), and that I have PTSD (he knows).

    He assured me that I had no reason to feel guilty.

    “I should have taken him to the ER,” I countered.

    “You were going to take him to ER that morning.”

    “I shouldn’t have waited.”

    “You waited, because he was getting better, and because we’d been here so many times before, even worse than this time it seemed, and he pulled through. You wanted to spare him the gurney, the ambulance, the hospital, all of that pain, if we could get him through it again.”

    I continued to protest and defend my feelings of guilt and remorse.

    Jim said earnestly, “Honey, when I look at your crooked back, you know what I see? I see Love. I see 50 years of Love for your children. You didn’t fail them at all. Look at all of our pictures. You, and then we, gave them a great life, despite their medical problems. They were dearly loved, and they were happy.”

    By now, I was sobbing. He continued, “And they both died peacefully, with us, when they were ready to go. And we always feared that they would outlive us. We wanted to be there with them when they transitioned, and we were.”

    Jim said that he watches me sleeping in Jon’s recliner, so I can be available to Jim if he needs me in the evening/night. He said that I thrash, moan, mumble, and he worries about me. I’m unaware of this sleep behavior, of course. Jim wonders whether I am working all of this out in my sleep. I don’t think so.

    I explained to him that I have flashbacks constantly all day and night to Jonathan’s final hours with us. Every time I walk down the driveway, I see Jonathan being placed in the mortuary van. More sobbing.

    Then I clutched Jonathan’s photo close to me, and I just wept unabashedly. Jim told me to “let it out,” and asked me if I wanted to climb onto the bed next to him, but I was paralyzed with grief.

    After I pulled myself together, we hugged and promised that we won’t hold anything back from now on. Jim had been “waiting for the right time,” and I had been “not wanting to cause more stress.”

    Jim, always thinking of me, said, “I wish I had met you sooner, so that I could have helped you more, and we could have had more wonderful times together when Jon and Michael were more able to do things.”

    “You were their only Dad, and you loved them and cared for them in every way. You were always at their bedside in the hospital or at home. I wish we’d had the whole 50 years together, but we’ve had 27 years. A blessing for all of us.”

    Tomorrow, May 25, is the date in 2003, when the ventilator was removed from Michael, and we gathered around him with prayer, love, scripture, and blessings. Just to prove he was amazing, Michael rallied for another 5 days. Jim has memory problems, but he remembered May 25 today.

    This was a major breakthrough for Jim and me today. We have been repressing our grief out of concern for upsetting each other, when what we really needed to do was to grieve together.

    In 27 years of 24/7 existence, with the exception of less than a month with his hospitalizations and going to England for 5 days for his mother’s funeral in 1999, we do know each other very well. And we are always putting each other ahead of ourselves.

    God Bless Jim for recognizing that we needed to do this and initiating the conversation. Jim knew I needed to cry, and he brought on the flood. It is helping me tonight. I feel relieved of some of the burden on my heart and soul.

    Thank you all for your love, prayers, and support of us, as we navigate our way through this confusing and complicated journey.

    Please know that we love you and pray for you and your loved ones.

    Love & Light,



    Rose
    Hi Rose,

    I’m so so glad you and Jim finally talked about what happened the night Jon died. You desperately needed to do this! I’m so relieved you finally let it all out! I was pleading with God to let you grieve. Repression was hurting you so badly. What Jim said is what I was trying to say. But Jim of course said it much better! Jim is extremely wise. I’m so glad Jim was there to give Jon CPR to give him a chance and I’m so glad Jim is with you now. As I said before, you were in close proximity to Jon the night he died and I do not believe Jon felt alone at all. He knew you and Jim were there. He knew he was loved. Jon felt no pain. He died sleeping. As Virginia said, if you have to go that’s the best way, at home, in his own room, his own bed. Michael guided him the rest of the way after you started the journey with him. Jon did say goodbye to you. Jon told you he loved you. You both told Jon you loved him. What a precious gift! Many people never get to say the final “I love you”. You did. Jon heard you say it and knew it was true with every fiber of his being. He loves you the exact same way now and I’m sure he is saying “Mommy, daddy I heard you. I hear you everyday with your love. Everything is okay Mommy, daddy.”

    Reading about the night Jon died broke my heart all over again. I’m so sorry. I see from reading your description of you seeing Jon unresponsive why you still have PTSD. The sting of those images will fade. I promise.

    Keep letting your emotions out PLEASE! It will only help you! My prayers always!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  5. #103
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    ((((((Virginia)))))) ~

    I’m so sorry for all you endured after losing your husband. “Your right arm.” I feel the same way about Jim, of course, because we spend every day and night together, and what we’ve been through in 27 years is equivalent to more than some people experience in a lifetime.

    I’m so glad that you had your dog for comfort and companionship and that you had a loving support group.

    Your support does help me, and while nothing can ease my pain right now, your words are reassuring and comforting. I thank you so much for your love and friendship.

    I have never lived alone. I went from living with my parents to marriage to birthing Jonathan and Michael, born a year and 4 days apart. Divorced, single parent, but I was never alone, because I had my boys. Then I met Jim.

    When Jim has been in the hospital, I’ve been so nervous without him here. I am paranoid at night, and I lock all of the doors, leave on lights, and try to talk myself out of thinking of anything untoward happening. With Jonathan here, I spent most of my time in his room, as we were both lonely for Jim, and I felt the need to protect Jon from a potential intruder.

    Because I am pre-grieving Jim now, I think ahead about what awaits then.

    For example, I have to figure out what to do with all of his tools and wood in his workshop, where he crafted Native American flutes. I will go forward with projects, which we’ve been unable to do, like getting new gutters, concrete in the backyard, house repainted in and out, bathroom remodel, etc. Emptying out the garage.

    I don’t plan to sell, but someday, I might have to do that.

    I will have to have a will and an Executor and Power of Attorney. That person has been chosen and is ready to serve in every capacity.

    There are so many things I still have to do for Jonathan, so thinking ahead about all of these things is overwhelming. Yet, I cannot help myself, because I have to be a realist and prepared.

    MOVING FORWARD

    After 2 weeks of not seeing him, John visited yesterday, wearing a mask. We got caught up with each other’s lives, and then John asked me for my “Honey Do” list.

    We got the hand truck out of the garage, and John stacked it with Jonathan’s unopened cases of formula in his closet, and I carried the unopened boxes of spike sets out to the garage. I will call the pharmacy on Tuesday to come out to pick them up, along with Jon’s feeding pump.

    Then, John fixed the broken passenger window on the van. I was so grateful, as that represented a trip to the mechanic, which I don’t have time to do.

    Today, I pulled out some of Jonathan’s seizure meds from the kitchen cabinets. I read on line that the best way to dispose is to use some unpalatable substance, like dirt or kitty litter, then pour that into a zip lock bag, pour the drug into the dirt/litter, mix it up. Zip it and put it in your un-recyclable trash.

    I’m going to put it in with Jim’s soiled briefs. Anyone that desperate for Dilantin or Depakote … well, I can’t imagine.

    Friday, I spoke to IHSS and sorted out my past due invoices from February to April. I left a message for Jon’s social worker, so I anticipate his call and answering painful questions.

    On Tuesday, I also need to contact the vendor for Jon’s O2 equipment, so that it can be returned. As long as we have it, Medi-Cal is being billed for the rental. I wouldn’t be surprised if Medi-Cal asked me for reimbursement.

    So, these are the things, which stand in the way of my grieving, my healing, and deplete me of the paltry coping resources I have within me now.

    Thank you, Virginia, for walking beside us, loving and supporting us. You are always in our prayers.

    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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  7. #104
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    ((((((Donna)))))) ~

    Well, I am the “older lady” on Marlowe Crescent, who should be bringing food to new neighbors and welcoming them. Instead, I wave to new neighbors, when I get the mail, or greet them on my walks.

    We had our time on our street, with 4th of July block parties, pot luck, with the community pool open, and gorgeous sunsets and fireworks displays around us. Impromptu dinner parties, chatting on each other’s patios in late evening.

    John’s dad was quite ill for many years, and we all pitched in with food, dog sitting, house cleaning, yard tending.

    Many times during Michael’s illnesses, John’s family was here for us, bringing food, helping us with arrangements, sitting with Jon, so we could be with Michael.

    And they are all still here, ready and willing to do anything for us at anytime. They just don’t live on our street any longer.

    And the folks, who are moving in, as the aging population leaves, have cultural differences. Always cordial, friendly, kind, and pleasant, but they tend to keep to themselves.

    How wonderful it would be if we lived on the same street! I can feel your hugs all of the time, Donna. I still wrap myself in the shawl you gave Jim, now as I try to rest on Jon’s recliner, which, evidently, I don’t do very successfully.

    I do feel all of the hugs, love and support here. This is why I turn to you, because you are all so loving, caring and uplifting. This is where I’ve come for 19+ years for understanding, to share our journey, and to learn from other parents. You are all very REAL to me! I love you, and I give thanks every day for the blessing you’ve been in our lives.

    Today, I thanked Jim for bridging the gap between us, and we agreed that we will no longer hold back anything from each other.

    Jim apologized to me, “I’m so sorry that you now have to take care of me. But I want you to know how much I appreciate everything you’re doing for me. I trust you forever.”

    “Please never apologize to me again. You have no reason to apologize. We took vows to love each other through everything, and we have. And we will continue to do so.”

    No matter what happens, we’ll be together.

    Donna, thank you so much for your everlasting friendship, for everything you have done for us to help us, for your untiring efforts as an advocate for people with disabling conditions, for caregivers, for parents, and for all, who benefit from your wisdom, knowledge and experience.

    We love you!

    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. #105
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    ((((((funnylegs4)))))) ~

    Thank you so much.

    I think, as a filmmaker, you are seeing us through your camera lens now. Our experience is resonating with you in a different way and providing you with greater understanding. Please hold onto that vision, as it will help you to grow as a producer, director, and actor.

    Jim and I do feel closer to each other and to Jonathan after our conversation, which we continued today. We do feel that somehow Jon was ready to join Michael, and we do believe that they timed his passing to coincide with their dad's needs.

    PTSD is a way of life for me, unfortunately. Jonathan's passing is a painful addition to a long-running series of stressful situations. For example, 16 years ago today, Michael's ventilation was discontinued. Every moment of that day is forever etched in my soul and my heart. Every moment of Michael's final illness is etched forever in my soul and my heart. So, I know that I will carry with me the trauma of Jonathan's passing until I join Jonathan and Michael.

    We may cast a thin veil over what we don't want to see, but it's still there. It will always be there.

    Our best hope is to learn to live with our sorrow and to find joy in each day to keep us moving forward.

    It is far too soon since Jon's passing for me to even imagine finding peace in my grief. So, I must be strong through what is happening now, naturally and understandably, to see my way through to grief's other side of acceptance, adjustment and adaptability.

    Grief is a process. There are no rules or timelines. It happens as it happens.

    Thank you again for your understanding, for your prayers and friendship. 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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  11. #106
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    Default Sixteen Years And 48 Days of Grieving



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

    For the past 15 years since Michael passed, Jim and I have spent Michael’s Angelversary with Jonathan remembering and grieving. Jonathan always requested our home movies, so that he could watch all of the fun times we shared together.

    But 48 days ago, Jonathan joined Michael, and now Jim and I are left to grieve for both of them. Forty-eight days ~ nearly one day for every year of Jon’s Earthly life.

    Where I have had years to find peace in my grief for Michael, my grief for Jonathan is fresh and raw. I’m pulling out all of my coping tools from my toolbox, which may explain partially how I have survived 48 days of profound pain and sorrow.

    Much of my survival is attributable to meeting Jim’s needs. Our days are occupied with his care and our endeavor to strengthen him for radiation on his tumor. We had a big scare and almost 2 days in the hospital, only 5 days after Jonathan passed. We persevere, and we’re making progress.

    I believe that Jim’s progress correlates to his sons watching over him. Jim has had bursts of energy allowing him to walk several times a day, without O2, to/from his bed to the bathroom. Yesterday, Jim’s SATS were so good that I reduced his O2 to 2 liters. He hasn’t gone that low, since he started on O2 last month. He’s continuing to do well on 2 liters.

    Of course, I’ve been craving contact with Jonathan and Michael, praying for them to appear in my dreams. We’ve had a few signs, but I am needing more confirmation. Watching Jim’s improvement is the biggest sign Jonathan and Michael could send to us. Timing is everything.

    An enormous factor in my survival is the love, prayers and support we are receiving from our dear friends and loved ones. The energy flowing toward us, and the love surrounding us, is a powerful force in keeping us on an even keel and giving us hope. We thank you all so much for this gift to us.

    After Jonathan’s passing, it took time for Jim and I to be able to share our grief, each of us worrying about stressing the other. Our avoidance caused more stress, and Jim recognized that we needed to address our silence. This was a breakthrough for us, as we are now able to grieve together.

    In the midst of remembering every detail of the day they received their wings, we recall with tears and laughter all of the wonderfulness of our beautiful boys, the joy they gave us, the honor we feel in being chosen as their parents, and the blessing they are to us and everyone, who has ever met them, read about them, studied them, cared for them.

    Christmas is still in Michael’s room, as I haven’t had time to put away the decorations. A birthday balloon from John on Jonathan’s 49th birthday last year still floats high tied to Jon’s lift.

    Our space is limited and cramped, and we have so much stuff, so Jonathan’s and Michael’s rooms have become repositories for stuff. The boxes of supplies in our garage are overwhelming. Reminders everywhere; many things to be done and not enough energy to manage all of it.

    Today, on Michael’s Angelversary, instead of addressing my grief and honoring Michael and Jonathan, I have been preparing Jim for his oncologist appointment tomorrow. We selected his attire, tried on pants with his enlarged abdomen, bathed, shaved, and plotted our approach to getting him there, through his exam, and home. Yesterday, I cut Jim’s hair, so that’s one less thing on the list.

    But, now I see that doing all of this for Jim is honoring Michael and Jonathan, because this is exactly what they want me to do. Take care of Dad.

    Yes. Of course.

    We miss our beloved, beautiful, courageous, precious boys so much it defies description. We rejoice in their freedom from their Earthly vessels and that they are again together in Bliss. We know that they are very near us and will never leave us spiritually, and that someday, we will all be reunited. This brings us comfort in our sorrow and helps to calm our longing for them in the physical realm.

    Sixteen years and 48 days. It seems like forever, as well as like yesterday. This is the dichotomy of grief.

    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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  13. #107
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    Rose, such a beautiful and meaning post. I came on to say that I will be thinking of you and Jim tomorrow and hoping for something good to come out of his appointment.
    Virginia

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  15. #108
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    ((((((Virginia)))))) ~

    Thank you so much, dear friend. It truly does help us to know that you're thinking of us and sending us positive energy. We feel it, and we know that it's a very large part of the reason why Jim is improving.

    John will be transporting us, and I know that he will help us at least to get into the building. Jim tells me that there are wheelchairs readily available at the entrance, with a place to put an O2 tank on the back.

    Yesterday, I spoke to the O2 supplier about Jim having a portable concentrator. There are two kinds: continuous and pulse activated. The latter requires that Jim take in a breath to get oxygen. Without an assessment from a pulmonologist, we don't really know what is best for Jim.

    When I mentioned having face masks for Jim, the representative said, "Unless he's on 5 liters, we don't use masks. He could get too much of his own carbon dioxide and not wake up."

    I'm so grateful that the O2 masks I ordered for Jim didn't fit! Our Angels are watching over us!

    Today, the DME delivered 2 more tanks for Jim, as each tank lasts 4 hours. He will use at least 2 hours tomorrow. The delivery guy arrived just as I was getting out of the shower, so Jim answered the door attached to his O2 concentrator, wearing his PJ shirt and his briefs. This is what happens, when the DME doesn't schedule a delivery time. I was told that the delivery person would call with a time. He didn't. He just continued knocking on our front door, until Jim got up.

    We still have 2 unused O2 tanks and a concentrator for Jonathan, for which I haven't scheduled pick up yet. So we do have plenty of sources of O2 right now. Thankfully, Jim seems to be able to tolerate the reduction in liters and being off of O2 for several minutes. I am praying that we can wean him off completely eventually.

    Now, dinner time calls. Jim is eating so much that I ordered from two different grocery stores yesterday and today on Instacart. Our cupboards and fridge/freezer are full. Every meal I serve Jim, he raves about. It's wonderful to watch him enjoy his meals.

    Thank you again, Virginia. Know that our prayers are always with you ~

    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. #109
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    Rose, it warms my heart that Jim is enjoying his meals. You are right your Angels are watching over you. The mask just proved it once again.
    God Bless tomorrow!
    Virginia

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  19. #110
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    When I mentioned having face masks for Jim, the representative said, "Unless he's on 5 liters, we don't use masks. He could get too much of his own carbon dioxide and not wake up."

    I'm so grateful that the O2 masks I ordered for Jim didn't fit! Our Angels are watching over us!
    Wow! I had no idea that could happen with Oxygen masks!!! Now I see why nasal cannulas are more common. Thank you again for your compliments on my films and your lovely message to me!

    Prayers for good news from Dr K on May 31! Your boys are indeed watching and acting on everything that happens. I love the picture of the boys with Jim! Wow!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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