What are you thankful for?
Page 1
What makes you angry about having a child with CHD?
What makes you happy about having a child with CHD?
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
What makes you angry about having a child with CHD?
What makes you happy about having a child with CHD?
These are difficult questions to answer. What makes me particularly angry about my son's heart defects is how little I can do to directly affect his outcome. Prayer, hope, and good parenting skills can all help him have a better life. But aside from that, I am sometimes overwhelmed by the odds against his leading a normal life and having a "normal" life expectancy.
I am a major "control freak" and as such, it does make me angry that I can't protect this child from his condition, and that the moments where there is the most hope for improving his condition (such as surgeries) are also the moments of greatest risk to his life.
I am frustrated, too, by the ignorance of the general public toward heart conditions. Particularly in my own family, it's frustrating for me when a family member says "Then he'll be all better after the next surgery." The truth is my son will never be "fixed," will never play football or be a track star.
But aside from that, there are special joys in having my special child. He is, even at 15 months, so strong and brave. He teaches me what it means to "never give up." The thrill I feel when he climbs into my arms and kisses me offset the negatives.
His presence in my life has also given me a new direction in my career. I feel certain that starting and administrating the support group I run was what I was "born to do." Gerard's life has given me , for the first time, a tangible way to make a difference in the world. For that I am incredibly happy and grateful.
T.C.
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What makes you angry about having a child with CHD?
What makes you happy about having a child with CHD?
I am certainly not happy about having a child born almost 6 years ago with Transposition of the Great Vessels. I have learned to deal with it, however, I still feel angry about having a son born with this defect.
Medical technology has advanced in that 30 years ago when my sister was born with Transposition of the Great Vessels, she died from it. I am consoled with the idea that my son can lead basically an active long life. I thank God for that.
D.J.
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What makes you angry about having a child with CHD?
What makes you happy about having a child with CHD?
I can't say its anger anymore. I think its more a sadness. The kind of sadness that when I look at my child, as good as he is doing that day, I know there are and always will be limits to what he can do. Whether he is running around and has to stop to catch his breath, or the countless doctor visits, tons of medicines, or the numerous surgeries. I feel badly that he must go through this.
Just a word to remember for the parents who are angry. I blamed myself, my spouse, and God for my child's CHD, until one day I realized the blame can't fix him. I heard someone say something that changed my anger to sadness with a glimmer of hope:
God does not create diseases, God heals them.
One more thing - I want all the parents who are feeling angry to know that it is OK to feel that way. We are human, and anger is the first step to accepting the reality and extent of this disease.
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What makes you angry about having a child with CHD?
What makes you happy about having a child with CHD?
I hate having to see my child go through so much pain. I now see how uncertain life is and live it to the fullest with my child.
B.E.
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What makes you angry about having a child with CHD?
What makes you happy about having a child with CHD?
I have never been "angry" about having a child with CHD. I've only been dissatisfied with my inability to access information quickly. The part that makes me happy is that God decided that Aaron could remain with our family a little while longer.
T.A.
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What makes you angry about having a child with CHD?
What makes you happy about having a child with CHD?
My angriest feelings revolve around the uncertainty of how/why our son was born with CHD. I know in my heart that I would never hurt any of my children, before or after they were born, so it bothers me a lot to think that it might have been something I did or did not do. Even though research shows this is usually not the case, there is still some discomfort, maybe call it guilt. I did not drink or do drugs, I took my vitamins, watched what I ate..all the right stuff, but still this happened.
The happiest part is how Noah has put such meaning into our lives and taught us so much in his young life (he is 7 months old). We as parents are supposed to be the role models, but Noah is the role model - happy, unassuming, flexible, and such a fighter. And looking at Noah, I know, even with all the heart problems and the uncertain future that lies ahead, we would NEVER trade him or any aspect of his life for anything in the world. He is our miracle baby.
B.B.
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What makes you angry about having a child with CHD?
What makes you happy about having a child with CHD?
Having a child with CHD makes me angry because I don't understand why it happened to us. I feel cheated when I have to sit and worry over every little cold or infection. I feel angry when I see my 3 year old daughter's face filled with tears and fear, wondering why she has to go through so many tests and procedures. But especially knowing that she knows something is wrong with her and I don't know how to explain it to a 3 year old, except to say that she has a "boo-boo" heart.
I can never say that I'm glad about her defect, but one good thing has happened, and that is coming closer to God. I have faith now that I didn't have before, and I have a great respect for life. My daughter is my angel sent down from above, and as long as God sees fit to let me keep her, I will treasure her life and let her enrich mine, and our family's as well.
J.
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