Parents' Line

How well I remember when my first child was diagnosed with hemophilia. He was almost 2 months old, there was no family history. The thoughts that ran through my mind ranged from disbelief to anger in a matter of just a few minutes. That was 31 years ago. Today, having parented two boys with severe hemophilia A, I am a seasoned veteran. I have experienced the worst and the best and I am still able to laugh and express thanks each and every day. How did I do it? Education. I learned, and am still learning, all I could about hemophilia, from heredity and treatment to reimbursement and the lack there of. I classify myself as somewhat of an expert while still acknowledging that I have a lot left to learn! I live by the premise that knowledge is power and power provides one with control. Take these in the right combination and a family can enjoy a normal and happy life. What is normal? Webster's dictionary defines it as “regular, standard, usual”. So, our lives, although complicated by an unsolicited caller, are normal by our standards... are there any others?

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