What are you thankful for?
Page 2
"What makes you angry about growing up and having a heart condition"?
"What makes you happy about growing up and having a heart condition"?
Please note that the following represent each family's individual experiences and beliefs. Every family is different, and the needs and feelings of the children involved will be unique. We encourage you to seek professional advice if you have concerns or questions with regard to these issues.
Responses to Family Room
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What makes you angry about growing up and having a heart condition?
The way it affects my family. It is very difficult for my parents to watch their child go through this and it is very hard on my child. There is no way to ease their fears - it is just something they have to work out but I hate it just the same.
What makes you happy about growing up and having a heart condition?
This one is easy - especially since I have recently given it a lot of thought.It has given me the greatest blessing of all and I did not realize it until I thought all of it through. If I had been born healthy, I would have had children the biological way. I probably never would have been motivated enough to work in a facility for children impacted by AIDS and never met my child's birth mother. I would not know or have the wonderful, beautiful person that is Charlotte. It is not that I am bragging on my daughter but she is a unique, special child - she is smart, funny and extremely talented along with being very loving and compassionate. I am so lucky to have found her in this world. Because of her background, many people would not have accepted Charlotte for adoption. I am so glad that I could see beyond appearances. I don't know that I would be that way if not for my own physical problems growing up.
S.M.
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| What makes you angry about growing up and having a heart condition?
This is a way I feel quite different from most people on this site - because I was so well, had no surgeries, and minimal restrictions (I was only told "stop when you get tired"), this was largely a non-issue for me as a kid. In retrospect, it's clear that I FELT different - I don't think I've ever had the stamina of a regular kid, and we know that my heart never speeded up appropriately. But since I was a fairly sedentary little girl, it just didn't matter. I think if I had been a boy, or in a family that valued physical exercise, my differences would have been much more visible. As a teen, I started running and exercising, and I knew that this was quite difficult for me, but I just assumed that it was because of a life of non-exercise, not my heart. Since when I asked the docs they said that I should not feel a thing, I believed them.
Ironically, I think this un-worried childhood has made my recent deterioration more difficult.When I found out I had dilated cardiomyopathy caused by my corrected transposition, I was ENRAGED. I had an extremely hard time coming to grips with the news. It is very difficult to go from the doctors telling you "you are fine-have a baby, do what you want, there's nothing to worry about" and "your heart is failing and you will need a transplant"with no in-between. I'm very grateful that I was so "unshadowed" up until now, but it has been a big change. So I guess what makes me angry is that I was not told the truth, even as an adult, about my condition. I took some stupid risks unknowingly - for example, I could have died during my pregnancy and delivery since it was not appropriately supervised. Even now,getting accurate health information has been an on-going battle.
What makes you happy about growing up and having a heart condition?
As a kid in a chaotic, large family (5daughters) my heart was a way I got special attention. When I went with my mom to the heart doc, it was one of the few times I had her one-on-one attention, and we always made a special day of the visit-going to a museum, or out to lunch. It also gave me a special"secret" to share with other kids - an invitation to listen to your "backwards heart" was a wonderful way to honor a best friend.
As a teen and young adult, my heart was a great way to stay cool and opt out of the smoking, pot, cocaine, and XTC of seventies and eighties life. I could go to the"coolest" parties and listen to the wildest music, but never got pressured to do anything. Even the most wired drug dealer would back off and be quite protective when I explained my reason for not partaking. I'm going to suggest to my daughter that she "develop" a heart problem in her teen years!
Now, although I wouldn't wish it on my worst enemy, my heart feels like the best thing that ever happened to me. I value my life and my family in a way I never thought possible. My husband and I have made changes in our marriage,I have changed my parenting, my job aspirations -all because I realized that, since my life might be short, I better be making the best use of my time here. This is the biggest separation I feel now from people who are, as an elderly friend once put it, "temporarily able-bodied".We live in a culture and at a time when death and illness can be very invisible, and people really do believe that if they eat right, go to the right doctors, have enough money, etc., they will live forever.
I understand much more than I used to the moral commitments of poeple two hundred years ago- when you acknowledge your own mortality everyday, things matter more. Going to Friends(Quaker) Meeting helps me value "that of God" in each of us and gives me a place to reflect on my own actions and beliefs.
A.G.
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| What makes you angry about growing up and having a heart condition?
I felt I never fit in with any group, I grew up around my parents and my parents friends, so I was too young to participate with them in a lot of ways. I never associated with very many younger people as I never went to school past grade 4. I could never do what the other kids did, and I was angry,probably at God, and often asked and still sometime wonder why I was born this way. But I have decided to turn my disability into an asset instead of keeping it a liability as it has been for over 30 years.
In the Bible it states that everyone has a gift, and possibly this is mine, and I am to use it to be an example of overcoming adversity and triumph.... I have had lots of people comment on my abilities and all the things I do with the limitations I have... I am disappointed that I never had high school social experiences and it has taken many years to get self-confidence, come out of my shell and come to terms with life. I feel I am getting close to "NORMAL" in a lot of situations , but we ALL CAN USE A BIT OF WORK... besides , GOD DON'T MAKE JUNK.> >
What makes you happy about growing up and having a heart condition?
I am glad I had a problem because I grew up a lot faster than many others my age, not physically, but in the realm of knowledge, and learning from many older people's lives. I still love to study biographies of people to see what makes them tick, and I feel I gained hundreds of years of knowledge "hanging around"elderly people. Much of what I have learned, many young people are not interested in until they are older and by then it is too late. I learned your word is your bond, pride in workmanship, the value of money, and many values a lot of younger persons do not have in this generation... I probably take it for granted but there are lots of things I missed- not getting out, and lots of trouble that I never had the opportunity to get into. I am pleased about that.
K.K.
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| What makes you angry about growing up and having a heart condition?
People who question me because I'm so young, they think I'm lying just to get the handicapped parking place or waited on first. I'm 35 years old with a 6 year old son. I know I don't look the part, but believe me, I live the part everyday of my life. I take an average of 22 pills a day. Thats a good day-no cold or headache or anything. I hate shots because everything the doctors do that is major starts with a shot. I hate hospitals because you can't get any sleep. I hate being away from my son, husband, 3 dogs and 1 cat.
What makes you happy about growing up and having a heart condition?
I'm glad that I was the one born with the bad heart, not my brothers or sisters. I would not be able to watch and wait when they are sick like they do for me. I'm teaching the doctors things they will be able to use on the other kids born with heart trouble. I'm happy that I have doctors that can take care of me, and I feel we have a special kind of relationship as well as a friendship. They are my age with kids my son'sage. Also, because of my heart, I adopted a cute little boy who, without me, could have been lost in the social service system .
R.B.
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| What makes you angry about growing up and having a heart condition?
Well, to begin with, I was always told to try harder if I couldn't do something. I was told I was out of shape. I did not know when my vision was going after doing exercise, that no one else had that experience. When I was short of breath I thought everybody felt this way. I remember in school trying to do a 6 minute mile run and collapsing on the lawn's of peoples house's with severe leg cramps and couldn't see straight. I thought everybody felt this way.
I was always told to try harder. That this was in my head. I remember that I felt like I was going to black out lots of times when I skied. When I stopped skiing sometimes this feeling would go away. I remember my legs and arms feeling shaky after exertion but never knew this was abnormal. Sometimes I would collapse when this occured.
I was 28 years old when I was finally diagnosed with an ASD. I was told growing up that it was MVP (mitral valve prolapse), no one investigated further. The last 4 years before being diagnosed I started to turn blue on exertion. I suspected then that something was wrong, but trying to get a doctor to listen and actually do something was a different story.
I'm realizing now that I have not been alone.A lot of people have been misdiagnosed. As an adult, 6 years post-op, I still have symptoms.
What makes you happy about growing up and having a heart condition?
I find it rewarding working in the field. When I talk to patients they relate to me on a level that they do not with the cardiologist. As an adult I try to move forward with my life and be greatful for life!
S.C.
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