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March 31, 2008 - a day to forget…

March 30, 2009 by Bill Strong
March 31, 2008 - without a doubt, the worst day of my entire life. The day my cell phone rang at work and I heard Victoria's shaky voice mutter words that would confirm our worst nightmare. She didn't even need to say the words, I could sense what she had learned -- Gwendolyn's DNA test was positive for SMA. It just doesn't seem possible that the fate of an innocent, precious little life can be determined by one number on one single sheet of fax paper referencing one gene mapped to one chromosome. I knew in an instant what this meant. My precious Gwendolyn's life would be cut tragically short by an incurable and untreatable disease that I had never heard of before. And, my time left with her - no matter how long - was short.

The time between hanging up my cell phone and running home (I used to walk to work) is a complete blur to me. I don't remember much of anything between the phone call and running up the stairs to clutch Victoria and Gwendolyn. I do remember feeling completely numb and sensing that, although the world was going on around me in hyper-speed, I felt as if I was moving in slow motion. A bomb could have gone off next to me on that run home and I wouldn't have noticed a thing. It reminds me of one of those nightmares I've had on many occasions, before and after Gwendolyn's diagnosis, where I'm trying to run somewhere, usually away from someone or something, but I can't run fast enough. Only, this time it was real life. I couldn't get home to Victoria and Gwendolyn fast enough. It was torture knowing that Victoria was having to bear the brunt of the devastating news alone.

Very shortly after Gwendolyn's diagnosis we made two vows to one another:
  1. We were going to cherish - and I mean really, truly cherish - every single second that we had left with Gwendolyn, and
  2. We were going to stop at nothing to provide Gwendolyn with the highest quality of life possible and try as hard as humanly possible to give her, and us, as many family experiences as time and the circumstances would allow.
March 31, 2008 isn't a day that I want to continue to memorialize or commemorate or dwell on. It is what it is. I can't change any of that. I can only live for today and focus on making the most of what time we have left with Gwendolyn. But, as I look back on the last 365 days since her diagnosis and think of those two vows that Victoria and I made, despite all of the challenges and difficult decisions and terrifying and trying times, I am unbelievably proud of the path we have carved as a couple, as parents, and as a family. And that's what I'd prefer to memorialize and commemorate and focus on.

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