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helping families accept ...


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  • helping families accept ...

    Good Day Everyone!

    I wasn't sure how to title it, hopefully I will be able to get some help with this ...

    Here is my struggle ... and I am writing this with those broken eggshells under foot ...

    My family doesn't always "listen" very well ... and as we all get, sometimes we think that our conversation "about the color of the sky" is more important ...

    Well, right now, with all of this fresh, with trying to get my husband, children and father-in-law the appropriate needed care, I think that my conversation is of the utmost importance and I want EVERYONE to listen and respond ...

    Sadly, , I am not getting too good of a response ...

    I am getting a lot of, well there is nothing really wrong with Warren, as you can see his Dad has had it all his life and he is fine, so Warren will be fine - I don't know why you are going thru all the efforts and troubles, there is nothing wrong ...

    And, as I am trying to find out the family history, so we can discover if there is another HCM, I am getting a "you are making a big deal out of nothing" or I am simply being ignored, they change subject or just sit in awkward silence as if I have said nothing at all ...

    Since it is so fresh, should I just let things be still for a while ...

    I thankfully have found so much helpful information here at this website, from Lisa, Dr. M. Maron, and I am so excited that my husband is going to Tufts next week and that we are going to get answers, and soon my husband will start feeling better ... I guess I just wanted to be able to go with as much information as possible next week, and am so frustrated that people won't talk with my "most important conversation"

    If anyone can share with me that would be great!

    I have tried the "if you could share info that would be great for helping Leilani and Jacob" (our kids) ...

    I am so enjoying learning, I am getting so excited by what I am learning - I am just thriving from all the knowledge, and maybe I am simply being obsesive with wanting to learn more ...


    Hope everyone is enjoying this wonderful weekend! We are having a treasured family day!

    Bye for now!
    \"Find rest, O my sould, in God alone; my hope comes from him. He alone is my rock and my salvation; he is my fortress, I will not be shaken.\" Psalm 62:5-6

  • #2
    Re: helping families accept ...

    You and your family have just entered this complicated world of HCM, do not expect everyone to fully understand it or in fact even "believe it" for a while.

    One step at a time - lets take care of your husband first, set up a plan for the kids and then lets try to work on your father-in-law. The rest will come around in time.

    You have come a long way in a very short time - take a deep breath and enjoy your weekend!

    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)


    • #3
      Re: helping families accept ...

      Thanks Lisa!

      We will enjoy the weekend ... nice "family time"!

      I'll slow down my pace ... I don't need to drive myself batty

      Hope you have a great weekend too!

      And thanks! Please don't ever stop all this great work you are doing! We so greatly appreciate it!!!
      \"Find rest, O my sould, in God alone; my hope comes from him. He alone is my rock and my salvation; he is my fortress, I will not be shaken.\" Psalm 62:5-6


      • #4
        Re: helping families accept ...

        It took me 3 1/2 years to get ANY info out of my husband's family about their history, and they still won't take it seriously. You aren't alone at all. Keep it up and don't push too hard. Hopefully one day they will actually sit and listen to you.


        Husband has HCM.
        3 kids - ages 23, 21, & 19. All presently clear of HCM.


        • #5
          Re: helping families accept ...

          As I read your message, I was happy to see you venting and getting out the frustration. And I was also thinking, whether with something like HCM or anything else that can threaten our well being, we tend to deny things and dismiss what we can't accept. My family has been at once incredibly wonderful, has goytten on the horn with research of their own, has totally overreacted, or has expressed concern but don't think they need to have anything done as far as testing. As the mom of the HCM patient, I try to have a positive outlook, but also need to be as realistic as possible. I listen carefully to the denials, dismissals, and different research people have turned up, and have figured out that I need to filter what I can and remain rooted in the possibilities of all HCM is - the risks, the positives, the support group here, Lisa's wonderful accessibility and hands-on approach, getting the absolute best cardiologist for my son, telling my family the facts and letting them do as they wish with them (you cannot force people to do something, I've learned the hard way...). and continue to take an active role with the doctors tending to my son and ask questions.

          So, a long answer to a long vent, but that's my two cents for what they're worth. Do as you wish with it - it's not advice, just my experience so far. Happy to share, and thank you for your beautiful message and for thinking of Jake! we're all in this together, right?



          • #6
            Re: helping families accept ...


            Perhaps you could get your family to read a few of the many excellent posts on this site. Print them. Give them to the reluctant to read. There is so much good info and so much support here. Use it! If your family is still reluctant to listen after that, know that you have lots of us out here who understand what you are going through. Many of us are in the same situation, in one way or another. Good luck to you and your family. We will be here for you.


            • #7
              Re: helping families accept ...

              I just sent you a PM with my phone number. I too will be at the HCM clinic on Friday, 8/6. I'm being re-evaluated after having surgery last Fenruary.
              I would be happy to talk to you and your husband.