Meet the McNeil Family

Meet the McNeil Family

Thursday, April 21, 2011

3 Years and 4 Days

Once again April 17th passed without me noticing.  In the weeks leading up, every time I opened my calendar, the day seemed to leap off of the page.  3 years.  3 years since my baby boy was diagnosed with Sanfilippo Syndrome.  However, the day came and went without a thought.  Until last night, when I added a dental appointment to our schedule.  I realized I had missed it.

Waverly's diagnosis date has always been more difficult for me.  My mother's intuition told me that day that Oliver had Sanfilippo, too.  April 17th was just confirmation for everyone else who was holding onto hope that he would be spared.  It was still a day that will forever haunt me.  When Matt and I were back in London last fall, we passed the spot where I received the call from our neurologist in PA.  We reminisced that dark day - falling to the sidewalk, calling Matt at work, taking a quiet cab ride back to our home together, calling family with the news - brief - unable to talk about it.

Yet here we are 3 years later.  I am currently watching a very bouncy little boy thoroughly enjoy watching "Cinderella" with his beautiful big sister.  I didn't know what our lives would look like with Sanfilippo.  I envisioned something far worse that our reality.  I still get giggles, hugs and snuggles.  Lots of them.  This isn't how it is supposed to be, but it is so much better than it could be.  

To 3 more years and 4 more days....and many more.

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