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:
- We were going to cherish - and I mean really, truly cherish - every single second that we had left with Gwendolyn, and
- 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.
Talk About It
Are You An SMA Carrier? Advocating for the Affordable Care Act: Gwendolyn's Story (Video) It Arrived!!! Let the Adventures Begin!
200k for sma news featured gwendolyn strong foundation fundraiser spinal muscular atrophy gwendolyn teamgsf sma tips parenting a child with disabilities sma awareness friends sponsor-a-mile development acts of kindness concerned birthday family video hospitalization chase community giving sma treatment acceleration act therapy travel good things for gwendolynShow More
200k for sma news featured gwendolyn strong foundation fundraiser spinal muscular atrophy gwendolyn teamgsf sma tips parenting a child with disabilities sma awareness friends sponsor-a-mile development acts of kindness concerned birthday family video hospitalization chase community giving sma treatment acceleration act therapy travel good things for gwendolyn holidays doctor g-tube transportation research special outing power chair newly diagnosed uncategorized health insurance daily care 3rd birthday sma carrier screening giveaway photographer adapted toys grief sitting up smaheadlines.com 2nd birthday clinical trial unite for the cure 1st birthday hospice medi-calHide Tags
2018April (1) March (1)
2017October (3) September (1) April (1) March (1) January (2)
2016December (1) November (1) October (1) September (2) August (2) July (1) June (1) May (1) April (2) February (2) January (4)
2015December (2) November (1) October (2) September (2) August (4) July (3) June (2) May (1) April (2) January (4)
2014November (3) October (3) September (3) August (3) July (3) May (1) April (1) March (5) February (2) January (2)
2013December (2) November (3) October (3) September (3) August (4) July (2) June (4) May (3) April (4) March (3) February (5) January (5)
2012December (3) November (8) October (4) September (5) August (8) July (7) June (8) May (8) April (9) March (7) February (9) January (9)
2011December (9) November (16) October (15) September (14) August (15) July (16) June (13) May (27) April (22) March (21) February (20) January (21)
2010December (19) November (22) October (16) September (23) August (23) July (27) June (24) May (24) April (21) March (26) February (19) January (24)
2009December (21) November (20) October (31) September (25) August (25) July (47) June (44) May (34) April (27) March (35) February (35) January (35)
2008December (37) November (22) October (31) September (20) August (30) July (27) June (18) May (5) April (6) March (3) February (1) January (2)
2007December (7) October (1)