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"What happened to that baby, Mommy?"

March 20, 2009 by Bill Strong

I've grown accustomed and more or less oblivious to prolonged looks of curiosity and silent sympathy while out on walks with Gwendolyn. They don't bother me anymore, really they don't. The only thing that matters in that moment is that I'm out as a proud father walking with my precious 17-month-old daughter. But, I never know what look or comment or situation will hit me hard emotionally.

On Wednesday morning it was an absolutely beautiful day here in Santa Barbara. I was taking a morning walk with Gwendolyn -- one of my favorite things that we do together. We were in our own little world, as usual, and were crossing the street heading towards home. As we waited for the light I noticed an adorable little girl across the street waiting for a store to open with her Mom. She was probably 4 or 5 years old.

As we crossed toward her, the little girl spotted our stroller and, I could no doubt tell, was very excited to see the little baby inside. We strolled past them and I could feel the little girl looking at Gwendolyn with excitement...and then curiosity...and then concern. When we were a few paces beyond them I could hear the little girl say to her Mom, "What happened to that baby Mommy?".

Gwendolyn had her bi-pap on, as she always does when we are out-and-about, so the reaction isn't surprising to me and isn't anything new. I completely understand and appreciate the little girl's curiosity and concern. But, for some reason the reaction from this adorable, curious little girl, on this walk, on this specific day hit me. I guess I realized that while I may have grown accustomed and oblivious to the perceptions of others, MY adorable, curious little girl is maturing, growing, and moving towards a greater comprehension and understanding of the world around her. I worry how questions like these will impact Gwendolyn. I'm concerned about what those glances will feel like for her. While I love that Gwendolyn is developing mentally just as any 17-month-old baby would be, I don't look forward to the day when that silent sympathy impacts my little girl.

I know I can't protect Gwendolyn from everything and that this, just as everything else through this journey, will evolve over time. I am certain we will develop a natural, productive, positive way to lead Gwendolyn through these transitional stages in her life. I also know that, given the mortality statistics of SMA Type I, we are extremely fortunate to still have Gwendolyn with us today and have issues like this to worry about. I guess it just hit me hard on that walk on that day because of the realization that the innocence and curiosity and zest for life of that adorable little girl is no different from that of my precious Gwendolyn. I love that! I just hope that we will be able to find a way to navigate through these social situations without overtly negatively impacting that same innocence and curiosity and zest for life that, as parents, we strive so hard to nurture and encourage and embrace.

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