I've known about hemophilia all my life.
I don't remember how I knew what it was, but I did. As a child, I figured that only Caucasians could be hemophiliacs. I also envisioned that hemophiliac children were sickly pale because they lost so much blood from paper cuts. I didn't know jack squat about spontaneous bleeds or how hemophilia could be deadly. As far as I was concerned, they (hemophiliacs) might as well have been mythical creatures. I simply thought they didn't exist in real life, only in books.
But believe it or not, I knew more about hemophilia than other people.
John had no idea what hemophilia was. So, when I uttered "This could mean he has hemophilia" to John that fateful day, he didn't even know what I was talking about. There are so many people like him too! People in the medical profession even. Believe it or not, I've been asked "What is hemophilia anyway?" by people wearing scrubs. "I never knew it existed" is what John told me once.
And there are still people in this world that have never heard the word "hemophilia" before.
Never in my wildest dreams would I have guessed that the blood I had coursing though my veins carried the FVII Deficiency gene. It it has been almost two years since we learned that our den had a direct link to the bleeding disorders community. Hemophiliacs weren't mythical creatures after all. After Ethan passed away, we thought that this link was only meant to be short-lived. Then almost exactly one year later -- two hours after Annika was born -- we learned once again that our family was going to be a part of the community, but this time it was going to for good.
We were terrified and we thought she would die. And oh how we feared the unknown! We felt guilty because we produced another child that would "suffer". At the same time, we felt blessed because our link to "Holland" was here to stay.We grieved briefly for the normalcy that was never meant to be and marched onward to the trip that lay ahead.
What an adventure these past two years have been.
You read all about where this road has taken. Two years ago I learned that there is "no footprint so small that it cannot make an imprint on this world". Ethan left such a beautiful legacy behind with every breath that Niki takes. My two special little bleeders have taught me a lot about myself. This blog has taught me a lot about you too. You've laughed and cried with me with every step that our family has taken. Every message, every comment, and every question has made an imprint on my heart and I am absolutely humbled by how much you all care about our little corner of the universe.
Thank you for wanting to walk with us.
If you will, walk with us some more. I wrote last month that I was serving as a Team Captain for our local chapter's Hemophilia Walk in April. Please take a moment to donate or join our team's fund raising efforts by walking or sharing the information to our team's website. I've set the goal high, ($7,000 to be exact. Can you guess why? Lol.) but I have no doubt in my mind that we can reach this goal if we all join forces.
So, walk with me and let's make some footprints together. :)
Support Lucky Factor Seven and visit our team web page to learn more.