If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

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  • a sincere apology

    [a sincere apology]

    Author: Michelle, Emily's Mom (---.hay.net)

    Date: 12-10-02 06:53

    To the forum, I apologize for any rude words or feelings I've posted that you've had to endure. It was VERY unfair to this forum and not what this is supposed to be about. I had a sleepless night over this, and had to voice this first thing.

    To Adam, I apologize for my inconsiderate words to you, however as it has been stated previously in this forum, I am entitled to my opinion. If you don't agree with me, then that's your right. I'm still entitled to my opinion.

    I do not personally have HCM, although my Rheumatologist (Dr. Janet Pope, a researcher at University of Western, London, Ontario) did say studies have shown my Rheumatoid Arthritis COULD be linked to a mutation of genes which develops HCM. I've lived for 2.5 yrs with the knowledge I could have possibly given this to my precious little girl. My guilt 1 year ago was so deep-seated that I actually had a break-down. Today, I know I can't change what could have been. The fact is my little dream-come-true lives with an awful disease, and we deal with it the best we can, under the advice of my paeds cardiologist, who is Dr. Gary Joubert, London, ON.

    I do respect anyone personally living with this awful disease everyday, not knowing what tomorrow could bring. I live with it as a parent. I can't honestly tell you which is worse because I haven't been on both sides of the coin, but this isn't a competition. All I can tell you is from what I've seen personally in my daughter and thru talking with other patients.

    I earnestly watch the postings of those who personally have HCM, and take note of your concerns. Yes, I'm an RN, however cardiology is NOT my specialty, and I'm learning as much as the next person.

    Thank you Glen, as you seem to be one of the few who understood what I was saying about an active 2 year old. I've received a few personal emails hailing my opinion, as it seems not many wish to voice that opinion on this forum, which is too bad. I feel parents are completely split on this decision.

    I spoke with my PC this am before posting, and I was told this:

    As long as Emily continues to do as well as she has, there is no need to restrict her activity. When we correct her WPW (at puberty), time will tell in regards to the type of activity(ies) she'll be able to participate, and those she'll be kept from.

    Let's keep in mind that, too, that Emily is ONLY 2 y/o, not 12, so the only current competition Emily will be involved in is for backyard toys.

    Again, God bless everyone involved with this despicable disease. I will continue to view the postings of this forum. Adam, I agree with the others, don't let this disagreement be the end of your future discussions. As a 'grown kid' you have a lot to offer others. Just say it in a more gentle way.

    Michelle

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    [Re: a sincere apology]

    Author: Sarah B. Board Moderator (12.144.99.---)

    Date: 12-10-02 07:10

    Dear Michelle,

    Thank for your very eloquent posting. I know that many people prefer to send individual e-mails instead of posting for a variety of reasons. There are no sides here, only people trying to do what is best for them and their families.

    I don't have kids and never will AND I'm the board moderator, so while I speak my mind a lot, there are times when it is not right for me to put out my perspective. This is a topic that I won't speak to since I never played sports, never wanted to play sports and won't have to deal with kids of my own who would face that issue.

    Glad you are back.

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: a sincere apology]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 12-10-02 09:56

    Hello all,

    I have been off the board for a few days. Leaving it in the hands of Sarah (whom I thank for her wonderful work).

    I have not read the posting for which this is posting is referring to. I will in a few minutes, but without reading it I will say a few things...then hold comments until I have read everything.

    Parents with children with HCM live with so much more then HCM, they have many issues that they must deal with and to some people it is far more painful then having the disease themselves. Those of you who are walking in these shoes know what I mean and I do not think it is possible to explain it to someone much the same way it is hard to explain what it is like to live with HCM.

    Please continue to post your thought, disagree, agree, keep the dialog moving but let us all try to be respectful of each other’s situation.

    I will share one story and if the person I am referring to reads this I mean no disrespect but it is a good example of perspectives - -

    This 73-year-old woman was diagnosed with HCM (at age 73) and she was upset because her lifestyle was changing. She had always been active and like it that way. She asked if I too had HCM, I said yes. She asked when I was diagnosed I told here I was 12 years old. Her response left ME speechless (yes I know hard to do!) She said, "oh that is so much better then me, at least you never knew the joy of having an active life".... how does one respond.... I did not feel I needed to because it was simply her take on the situation. For the record I would have given just about anything to be diagnosed at 73 and have my activities limited at that time...but that’s my take.

    Best to all,

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: a sincere apology]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 12-10-02 15:19

    Well I have read the items that have caused this posting... I think opinions are wonderful and respect of each others opinions are part of being part of a community. I see both Adam's side and Michelle's, I understand you both have your opinions and I respect them. I think it is important to remember that involvement in competitive sports is contraindicated with HCM but to remain healthy and active is something we should all be working toward. Yes, kids will be kids and with proper guidance they must learn what can and can not be done. Yes, young kids do die from HCM some much younger them the medical stats may make one think...but most kids with HCM do grow up to be adults with kids of their own. It is my hope that the young people out there will be mature enough to understand that NO sport is worth dieing for and that life is much much more important then a game.

    Adam and Michelle I respect you both for your views and thank you for sharing them here you have given us all a great deal to think about.

    Sincerely,

    Lisa Salberg

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: a sincere apology]

    Author: Erica Stolzenberg (---.biz.dsl.gtei.net)

    Date: 12-12-02 09:39

    Dear Michelle ... you are blessed to have your little dream-come-true, period! I read your initial posting the day you entered it on the board. I continued to read the comments of others and did not add my two cents simply because I believe it is 'your' choice and your opinion! Today I feel compelled to share a smile with you. Perhaps I should have sent you a little smile and hug via email earlier but better late than never -- so please know that I have been sending you big hugs and thoughts of encouragement, and support in spirit and in thought! : )

    The only thing I would like to share with you however, is that I wish your family and especially your little dream-come-true all the love in the world in addition to the most wonderful life! You are so lucky to have her, period, and as her mother it is your duty to parent her the way YOU feel fit! I believe you are a wonderful loving mother! One day I too may have a child of my own with HCM. It will be up to God to decide. It will also be left up to my family to decide how we should parent the future little blessing (when and if the time arises!) So you continue to love your precious little gift, stay positive, and know that God is watching over your daughter and what is meant to be will be ... we can't alter what God already has in store for us!

    My prayers are with you! Happy Holidays and big hugs to you, your family and your little angel, Emily!

    ~Erica

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: a sincere apology]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 12-12-02 10:59

    Michelle - I have recieved several emails from other HCMA members who have said many of the same things as Erica. You may have received private emails as well from these people.

    Just thought you would want to know.

    Lisa
    NOTE: This is a post from the previous forum message board.

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