Ten Years

I love Oliver's hands. I snapped this photo this morning as I was dropping him off at school. He has always been a hand holder. As a little boy, when others his age tended to run off to play and explore, he would patiently wait for me with his little arm extended. He is innately cautious. At almost 11.5 years of age, his hands are showing signs of growing up. Little blonde hairs are appearing on his fingers. His hands have lost the chubbiness of the past and have become leaner. They are soft, but becoming more contracted with each passing day.

Today marks ten years since he was diagnosed with Sanfilippo. Like many families, the diagnosis story is one we share often. It's like a birth story; each one unique yet repeated every second of every day. I have the diagnosis anniversaries on our calendar I am not sure why, but as a sentimental woman who enjoys reflecting back, it prompts me to remember. And feel.

That date the doctor told me what in my heart I already knew. The day Waverly was diagnosed, my mind confirmed it for Oliver as well. Yet I had to share the devastating news with Matt, who refused to give up hope that his son would be spared. And our family who believed with their whole hearts that a miracle was possible.

I remember looking down at Oliver minutes after receiving the call. He was in the bottom seat of our double stroller. He was a bitty cherub, smiling up at me without a care in the world. His big sister was leading the way out front, as she will for rest of her life. I wept on the sidewalk and I held his little hand then too.


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