05/02/2012 10:57 am ET Updated Jul 01, 2012

Watching Avery's Story, Remembering My Son's

Some memories remain vividly imprinted 22 years later. The words spoken are unchanged and, still take my breath away. The feelings evoked are fresh and raw. Our second born son, Jordan, was diagnosed with Spinal Muscular Atrophy, Werdnig Hoffman Disease, in 1990, when he was two months old. It is the same disease that took 5-month-old Avery Canahuati's life early this week, and as I watched her story go viral on a network that didn't exist when Jordan was her age, it was as if I were reliving the most painful of those moments again.

He will die before his second birthday, the neurologist said, as a team of medical residents observed and learned. He'd looked perfect for the first two weeks of his life, until, seemingly overnight, his body became flaccid and then steadily lost function. His brain would develop normally, we were told, but his body would continue to lose ground. We had never heard of spinal muscular atrophy. We had no family history, though we quickly came to understand that we were recessive genetic carriers with a 1 in 4 chance of having an afflicted infant.

Our shock was compounded by the fact that an amnio had told us that this baby was healthy. And our feeling that our world was imploding was magnified by the fact that we'd insisted on that amnio because our first born son, Tory, had been diagnosed with a brain stem tumor when he was 19 months old and a recurrence when I was nine months pregnant with Jordan. In fact Tory had surgery and began chemotherapy the day before I went into labor with his brother. We'd brought Jordan home from the hospital with our thoughts centered on Tory, but we were also keenly aware of the hope that Jordan's new life brought.

Lightening never strikes twice, doctors assured us.

True. This was, impossibly, even worse.

By the time of Jordan's neurologist appointment at the age of ten weeks we knew something was terribly wrong. We'd anticipated bad news and talked endlessly about the disabilities that we could live with, and how we would reconfigure our own lives to give Jordan a happy one. We'd even gone to contract on a ranch style house that we imagined we'd renovate for accessibility. We bargained with God for the lesser of the terrible diagnoses we thought we could imagine. We talked about quality of life and how we would regroup to take care of Jordan while facing the challenges that we believed would be ahead.

What we NEVER once imagined they would tell us was that Jordan would die and that there would be no treatment options for him. It never occurred to us that we could be given a worse diagnosis than Tory was given with a brain tumor. So we sat stunned as the neurologist had his residents all gather around to observe Jordan's quivering tongue, a tell-tale sign identifying SMA.

The choices ahead were binary, but hardly simple. Would we bring Jordan home and care for him there, or institutionalize him for the remainder of his short life? Did we want to prolong his time here with a ventilator or go the route of Do Not Resusitate orders? In the day and age of medical science advances around every corner, the news that there was not a single treatment option to offer or discuss was shocking.

Twenty two years later, as I read about Avery (and her parents' bittersweet bucket list) I was brought back to the days between Jordan's diagnosis and his death at the age of 6 months, 3 weeks. Like Avery's parents, we tried to pack an entire childhood into a few short months, noting all of the firsts, enjoying moments, keenly aware of time, and taking lots of pictures. We came to know thankfulness even in the face of despair. We were thankful to have had Jordan and the gift of his life; we were thankful to have loved him and to have been his parents.

All these years later, not much has changed in the world of Spinal Muscular Atrophy. But much has changed in my world, and here is what I know to be true:

Even in your darkest moments you can find strength to draw on as you continue on this journey called life. That strength comes in the form of recognizing the gifts in your life of family, friends, hope and for some of us leads to a journey of making meaning of and telling our story. Avery's parents are doing this already and I thank them for inspiring me to remember Jordan today and honor his short life by telling his story.

Hope for the future can seem elusive, but if you can catch a glimmer you can begin to build your life to a "new normal" one day at a time. In 2012, Avery's parents have social media as a vehicle to share Avery and their story, giving her short life broader meaning, possibly bringing hope to others yet to be born. That is a gift to them and to all of us. I thank Avery's parents for that and extend from our family to theirs, our heartfelt sympathy and hope that our words can help them get through today with a glimmer of hope and ease a bit of their sadness.

Our own story is still being written. After multiple surgeries, chemotherapy and radiation, Tory has been cancer free since 1994. He's 26 now, in graduate, and dreaming of his future. He has a younger sister, Jessi, who we adopted in 1992, and a biological brother, Brett, who was born in 1998. With advances in genetic testing, he isn't even a carrier of the SMA gene.

We are a family shaped by Jordan. We honor that by remembering him, by sharing the tale of his life and death. And, like Avery's family, we also remember that we are part of a community of families, that are one family, joined by the bonds of challenges faced amongst families with special needs and health issues.