On March 14, 2017, people in the Northeast were digging out from a huge snowstorm. (Sounds familiar, doesn’t it?) My husband, older daughter and I missed that snowstorm. On the Friday before, we had flown to Texas to be with our younger daughter and her husband at Cook Children’s Medical Center in Fort Worth, where our grandson Rylen lay dying.

From his mother’s arms into Jesus’ arms, Rylen passed away on March fourteenth of last year.

We first met Rylen on November 15, 2011. Born with hydrocephalus, we didn’t expect more than a hello and a goodbye. But God had other plans.  For nearly five and one-half years, Rylen grew and learned. He loved trains and electronic devices with buttons. He loved going places and being with people. He loved his family and Jesus. He started school in January. He loved that.

And his million-dollar smile lit up the world.

Rylen and his parents faced the challenges of a special needs child with faith and courage. He is gone from us, but his fragrance still lingers.


I have made patchwork quilts for all my grandchildren. Last January  (2017) I began to put Rylen’s quilt together. His quilt became a memory quilt. It includes fabric left from clothes I sewed for him, a train on an orange backing (orange was his favorite color), and a white, black, green, and blue logo with the words “Donate Life.” Rylen’s legacy includes organ donation to six people, children and adults.

Frank and I are now registered organ donors in New York State. Each state has it’s own registry. Perhaps you would consider becoming an organ donor.

On March 14, 2017, the organ donor flag flew between the American flag and Texas flag at Cook’s. We said our goodbyes to Rylen. We miss him, but we know he is well and happy in heaven. And we cling to the hope of seeing him again one day.