Hi Tiger
So, just found out my 2 Month old baby girl inherited my BAV..
my mum found out about my condition in about 1967, back then people just didn't know what the situation was and many thought it was a death sentence. I can only imagine it must have been terrifying for her to have found out about it (as she'd lost a baby 18 months before me).
Mum was a strong hearted woman who grew up on farms. She wasn't technology oriented, but had had her own life saved by the new technology of penicillin. So probably this gave her some hope that the medical world could save her baby too. I was lucky in that as I grew up the medical science around me grew with my needs. For sure I was an early patient, but you know I'm still here.
I'm the only one in my family who has this disease. And if I may be frank, looking at how everyone's lives went I can say that me being a library kid didn't hurt me. I focused more on education and developing myself than any of my cousins did.
Many many times I have contemplated my life and wished I could have been big strong *******s like them, but then I look at the hassles in their lives and am glad I had my life as it was.
I have developed the view that people show who they really are through adversity. By being faced with challenges I am sure I grew stronger and wiser.
For starters simply being aware of my own mortality from an early age helped me to see that life was a precious gift and to be lived with awareness of that.
Would I have left my small town, lived in 5 different countries and have taught myself languages and seen what I have seen if I had not be BAV? Probably not.
My BAV gave me the opportunity meet my wonderful wife (in South Korea) and to travel literally from one end of the earth to the other to live our lives in Finland and then Australia.
The technology is improving all the time. We have methods of monitoring ourselves and testing our blood which was unimagined even by Sci Fi writers at the time of my birth (and to be sure there are some greats in that period.
To be honest I think I feel sorry for my cousins who were born perfect.
Get out the movie GATACA and watch it. I understand how you feel about at least one aspect, for I too worried about the possibility of passing my genetics onto my children. When I was younger I started a career in Biochemistry to study DNA and Genetic engineering. I hoped to be involved in working towards making my kids lives free of this. Over time (starting with my studies) I realized that there actually wasn't anything wrong with me, its just genetic variation. Its mainly a perspective which makes us think of a mutation as being a defect. If you look at the movie Blade Runner, when compared to a Nexus 6 replicant (fiction of course but the metaphor is useful) we are all weak and fragile in comparison.
When my best friend died of cancer at 20yo I realised that there were far worse genetic mishaps that could occur (for cancer is related to your genes and to genetic mutations).
Love your little girl and teach her to be strong and confident. Teach her that she has only the limitations that all humans have. No more, no less. Teach her to respect herself and not feel crippled.
I'm sure she will grow up loving you for your strength, just as I did my mother.
