Rowan asking his Physical Therapist for a hug. November 2013.  She knew him as "truly a beautiful little boy who exuded such radiant joy and warmth and charisma. "

Rowan asking his Physical Therapist for a hug. November 2013. She knew him as “truly a beautiful little boy who exuded such radiant joy and warmth and charisma. “

Just a few weeks after Rowan died, we met a woman who had also lost a special needs son. She commented that perhaps special needs parents are more prepared to deal with this kind of loss, as it compares to the loss you first feel when your loved one is diagnosed. We looked at her in disbelief. And then we all quickly ended the conversation and went our separate ways. We did not know her story or judge her for her feelings, but we knew with absolute certainty that we could not relate. We left with many questions: Didn’t she understand how great our loss was? Didn’t she understand that our son was pure joy to us? That we didn’t feel a loss when the label ‘Williams Syndrome’ was added to our family?

When we learned that Rowan had Williams Syndrome, we sent out a message to close friends and family. “Please teach your children and friends tolerance and understanding for those around them, as this will be Rowan’s foremost need as he grows.” Yes, we worried about the society that Rowan would have to live in. Yes, we recognized that the work with therapists, the schools, the regional center, and the doctors who wanted to know more would be a full time job. A job that we had no experience in, and a job that would be difficult, frustrating, and exhausting at times. But did we feel a loss? No. Not for a moment.

A few weeks after we learned about Rowan’s diagnosis, I stopped by the pediatrician’s office. Both kids were with me, in their matching snowman pajamas. We were having a great day, running a few quick errands along the way. The pediatrician, who had known us for years, stared at the ground as he asked how my day was. I remember his look of surprise and disbelief when I said “Great!” Didn’t he understand that Rowan hadn’t changed overnight?

Williams Syndrome meant that Rowan might never leave our home. It meant that our resources would be spent on therapists and saving for Rowan’s future, instead of on new cars and houses. It meant that returning to my ‘old’ career was unlikely, since Rowan’s care would take more time and energy than we anticipated. But Williams Syndrome did not stop Rowan and our family from leading a full life. It did not stop Rowan from bringing pure joy to all of us, every day. Because Williams Syndrome did not define Rowan, and it did not define us.

There was never a moment in his life when Rowan did not meet our expectations of him. Even on the day that a doctor gave him a label. Because we knew in that moment that he was still Rowan, a little boy that stole our hearts the moment he was born. In fact, Rowan exceeded our expectations. Everyday.

“If given the choice, of course you would have preferred not to have a special needs child”. We were rarely asked this question, but often told this statement. No. No! We would not have preferred that. If we were all powerful and could go back in time, to the moment Rowan was conceived, we know that we would have made him exactly the same. Exactly.

We grieve every day for our loss. We grieve for the loss of our present, without Rowan’s smile, warmth, curiosity and exuberance for life. We grieve for the loss of our future, without Rowan by our side. We grieve every day for those who never had the chance to know him. We grieve for those who never had or took the chance to have their eyes opened to his view of the world.

Our too brief time with Rowan was life-changing and precious, a powerful gift of joy and life lessons for us to carry through the remainder of our lives. We wouldn’t have changed one bit of it. Our hope, in sharing Rowan’s story, is that we can give you just a glimpse of Rowan’s gift to us.