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    • #22497
      Colleen Steele
      Keymaster

      This is a heavy topic to discuss – but important. Have you discussed or have written out your funeral/celebration of life arrangement wishes? For example, have you selected music, theme, preferred location or special requests?

      It’s sad to think about one’s own passing but I’ve known people who helped their loved ones by pre-planning in case the worst happened.

      I have not gone this in depth with my son. He is doing well and I can’t bring myself to think about that changing. However, sometimes he mentions things. For example, a song came on the radio one day and he said, “Please don’t play this at my funeral or celebration of life.” It made me think that maybe I should have a discussion with him about what his wishes are.

      Have you thought about this and shared your wishes with anyone?

    • #22500
      Brittany Foster
      Keymaster

      Colleen,

      Before my last heart surgery I had this discussion with my mom about things that I would want and wouldn’t want. I think that it is a hard topic, but just like letting people know your will and having a health care plan in place of what your wishes are, it helps to ease the stress on loved ones. My main thing that I remember telling my mom is that I would just want pictures of myself everywhere highlighting my best moments in my life. I don’t want to be remembered as being in a casket. I want to be remembered for the life I had.My boyfriend’s dad did a celebration of life and that’s what he wanted and it was honestly really great and gave everyone so much peace and comfort. I think that’s what I would want. I know some religions are more strict about the arrangements and have certain standards. So I am sure it is different for everyone and what they believe in.

    • #22516
      Denise K Thompson
      Participant

      Thanks, both Colleen & Brittany. I know this a fragile topic. When I was first diagnosed, I talked about it too much, but found out who could handle what. I bought a grave in a favorite pioneer cemetery that my son & I have investigated for paranormal activity for years. Crazy as it sounds, I feel I have a relationship with some of the spirits there. Family & friends know my connection with the other side and by me speaking if it with a lighter heart, I believe they are dealing better. I share different things depending who, but basically want to be remembered as being interesting, not depressed, in a bad marriage or unable to fulfill my life’s dreams. Don’t know how far we can influence the nitty gritty of the remembrance ceremony, but it will be interesting to hang out & see.

    • #22517
      Carol Volckmann
      Participant

      Colleen, I believe bringing up end of life issues is heart rendering, yet so very important for everyone. Of course having this discussion with someone with a life threatening disease is even more difficult but again so important.

      When your son brought up the song he heard which meant something to him I believe that is one of those times that opens the door. He may open the door and you can let him know what it means to you and what your wishes would be when you die. It can all start there.

      Brittney opened that door before her surgery and I am sure her mom was grateful and felt somewhat relieved to know just what Brittney wanted.

      It is strange, talking about your own wishes when you die gives everyone a sense of relief. It is all out of the closet and no one need to hold all those thoughts in any longer – it is out and it is okay to talk about.

      Having said all that, there are many who want to remain in denial and are too uncomfortable. That is a shame but we just have to move away from that and respect them. One of my brothers was like that when my mother very near her death. He was unable to deal with her, or her wishes.

      When I was still living in Boston I volunteered at the Children’s Hospital on the terminal floor. There was this very young (11) and probably one of the wisest person I ever met. Henry knew he was dying yet he spent every waking moment reaching out to the other children. When they asked him what was wrong with him, he would tell them which opened the door for them to talk about their own dying – their fears, their wishes (the biggest wish was wishing they could talk to their parents). Henry reached out to the parents and talked about his dying and how important it was that he was able to talk to his parents.

      Henry taught me probably the biggest lesson in life.

      Loving life – all of it – sharing life – all of it.

    • #22526
      Colleen Steele
      Keymaster

      Brittany, sadly, like many PHer’s, my son and I have attended many funerals and celebrations of life over the years. They are a true and beautiful reflection of the person when how they wanted to be remembered is planned into the arrangements. It’s so hard to bring myself to discuss this with my son. I will somehow bring myself to do it.

      We are Roman Catholic and the funeral Mass has strict guidelines that need to be respected but the reception would most likely be in our church hall and that’s when families can remember their loved one as they wish. Agh, I really hate thinking about this. He’s doing well. It’s like I’m afraid of jinxing him.

    • #22527
      Colleen Steele
      Keymaster

      Denise, I find it really interesting that you did that research as a way to plan for your own passing. I enjoy watching paranormal shows and I don’t think I’ve ever heard someone share that they wanted to be buried somewhere that activity seems to be strong.

      As a Catholic I’m really not supposed to believe in such a thing but as a child I experienced some things that to this day make me wonder about spirits and such. As an adult I feel very connected to my grandmother. I can’t explain it other than it being a strong feeling that she is always with me.

      Thank you for sharing your perspective.

    • #22529
      Colleen Steele
      Keymaster

      @cdvol3gmail-com I re-read what you shared several times because it was so touching. What a beautiful soul that child had to find away up to the end of his life, to help others like him in such an important way. That’s really remarkable.

      Every once in a while my son mentions things about what he does and doesn’t want if he dies. I’ve been taking note of what he has shared and from now on, I’m going to open up the conversation more by asking my own questions. Like you said, it’s hard to do but so important.

    • #22557
      Brittany Foster
      Keymaster

      @dinky1952 I really think that is great that you have talked about all of this. It will make things easier on your family too (even though nothing about death is ever easy on anyone). But it is better to have open conversations like the ones you are having. I think it’s so cool that you have the spiritual connections like you do. I believe in all of that and definitely believe people have those “gut feelings” that something is right and how it’s supposed to be. Are you a medium?

    • #22558
      Brittany Foster
      Keymaster

      @colleensteele I can understand the fear and the sadness and strong feelings that come up when thinking about all of this. But, I remember attending a CHD conference and there was a talk about death and arrangements. As hard as it was to attend, I learned that EVERYONE should have some type of will and health care plan written out and discussed with their loved ones because the reality is that NONE of us know when our last day is going to be and even the healthiest of people should have these types of talks with family members. I have had friends pass away from terminal illness but I have also had completely healthy friends pass away from freak accidents that nobody saw coming. Life is crazy for sure.

    • #22569
      Colleen Steele
      Keymaster

      Brittany, sadly our family has has the same experiences. We have lost many PH friends but also family and friends rather unexpectedly. During our first trip to Stanford to been seen by a PH specialist I received a call that my cousin was killed in a motorcycle accident. While my son was recovering from transplant a “healthy” friend from college dies suddenly from a heart attack. You just never know.

    • #22572
      Denise K Thompson
      Participant

      Brittany, you asked if I’m a medium. My restrained ego would have to say no, but I have no doubt another medium would say that I am.
      I hear spirit voices & have been blessed with the most amazing visual spritual experience. Most of my communication comes through recorders that will pick up what our ears can’t hear. My belief is we all could have the perception I have if we listened.
      Colleen, I didn’t research my burial plans, I was already a ghost hunter & made connections with particular spirits before I found out my prognosis. I know some things I’d rather not know about the other side, but my faith protects me and hopefully will remove the doubt & fear that may come. I feel blessed that my son,(in his 40’s), will find comfort in the awareness he has from our shared experiences. He called late last nite because he had woken up with a vision of me floating over his bed. He said it has happened twice. So much we don’t know, but what a journey, eh?

    • #22579
      Randolph Reynolds
      Participant

      This is an extremely difficult issue to deal with but I have started. Only my wife and I have discussed this. We are both Christians and I have the basics of my funeral/celebration of life written out but the conundrum is that whereas we both have expressed our thoughts the heaviness starts with how the end of life comes yet I can only keep going by putting this out of my mind. One thing about having PAH is that I feel as if I were on borrowed time. How I approach this is to let myself believe I will be around for a few more years and my treatment tends to indicate I am holding my own. I try not to dwell on the subject but visiting doctors brings it up. I counsel with a friend who has experienced working with those who have projections of dying in the near future and we work on scripture and other readings.

      My wife is much more at peace about her future but she has no terminal illness. What I have is an underlying anxiety and depression that hinders my activities. So in practical terms the arrangements have been stated but few in my family need to worry for now. The main thing is to seek hope for the future whatever God brings. I am learning to live with all of this. Perhaps it is a blessing. It is certainly by the grace of God that I am physically better than I was a year ago.

    • #22586
      Brittany Foster
      Keymaster

      @colleensteele sad but so true. It really helps me to have such a deep appreciation for life and each day because seriously we just never know. I am so sorry to hear about the tragedy of the motorcycle accident and about the heart attack. That is both awful and heartbreaking news to receive. Especially when going through a time of such stress yourself.

    • #22588
      Brittany Foster
      Keymaster

      @dinky1952 it sounds like quite the journey for sure! I am sure that you have a spiritual gift ! I have spoken to a few mediums in the past and they provided me with a sense of hope and peace unlike anything that I have ever felt before. Just hearing the things that they were able to tell me and knew about those that has past on was really amazing (and at times a little scary to be honest) But it was one of the greatest experiences and most healing experiences I have ever had after the passing of one of my close friends. I really felt their presence too.

    • #22590
      Brittany Foster
      Keymaster

      @ripple76 I can relate to what you are saying. I sometimes go along with my day thinking that I am doing okay and hanging in there but then when I have doctor appointments for various reasons I am reminded of my health and the state of my health in the present moment. It is hard when the brain is telling me that I’m one way but my vital signs or test results tell me a completely different thing. Sometimes I have to just give myself a rest from appointments (not for too long) but just enough to reset my mental health and my thoughts about my health.

    • #22621
      Shannon
      Participant

      This can be a very hard topic to talk about for some people. I can understand why of course. I recently had to put my 8 year old bulldog to sleep on December 9th. One of the hardest things in my life to do. But he was suffering and it was time. And the Vet came to my Sons apartment which was comfortable and best for my dog. And as he peacefully passed away , I could hear him sigh a big relief. And his face looked like a puppy face. I can only hope I pass as peacefully as my beautiful dog did. But anyway, my Son took it very hard, saying he just wanted more time. That’s when I realized I had to talk to all of my kids. And I have and I made it as blunt and honest as I can. I also have wrote each of them a letter that I keep with my important papers. I also have planned everything and paid for everything at a cute little funeral home( it’s bright yellow) my favorite color. I am
      Not scared to die, never have been. I actually have died during surgery a few years ago. But I came back. I definitely am looking forward to what is beyond this world. And as wrong as they may sound sometimes I welcome it! As long as my kids are ok and can stand on their own. I have done the best that I can.Also as far as doctors saying things like I am living on borrowed time blah blah blah….. they are not God and they don’t really know when I will die. And I will die when I am ready and not a moment before. Unless of course God says it’s my time.

    • #22646
      Brittany Foster
      Keymaster

      @shannon4jk I really respect your views about life now and life after this. Like you, I am really not afraid of death or dying. I know it is so heartbreaking when people and pets go onto the next life and thinking of other’s mortality really makes me stop and think about my own and the things that I would want and wouldn’t want for my life. I have discussed a lot of this with my mom. my biggest worry is for the people that I would leave behind. I just would want everyone to be okay. I know how hard it is emotionally for family after someone passes and I just hate to think that I may cause that pain and heartache if I end up passing before the ones that I love.

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