Happy Birthday, Son

For the past few weeks, I’ve found myself caught in unexpected moments of intensity.

Have you ever felt like you were a character in a movie or story (or better yet - a cartoon defying all boundaries of logic)? When this moment shows up in my life, it seems the same alter-ego appears. Sometimes she’s a woman with a tense look on her face - determined yet fierce - in a fighting position wearing boxing gloves. Other times she’s fallen into a hole and is clawing her way out, covered in dirt and sweat and wreaking of the earth.

This raw depiction of myself did not happen overnight.

Eleven years ago we made the decision to begin a family. We were in our late twenties and felt like we had arrived at a point in our lives where the world was literally sitting before our feet. We had worked hard to achieve our goals both personally and professionally and had a naive confidence that with intentional thought, focus and a little elbow grease, anything was possible. Naturally, that’s how we also viewed parenting. We had our (strong) opinions. We read all the books. And we were 100% confident that we would conquer this new endeavor. Boy were we wrong.

Our son arrived into the world 10 days early. Toward the end of his gestation we discovered he was measuring “small” and that my fluid was low and we landed in an emergency induction. It took 26 hours of intense monitoring (and I had a natural childbirth plan) for him to finally make his very quiet entrance into life. He was in fact very small and the doctor diagnosed him with IUGR and Hypotonia. At just 4 weeks old we were referred to specialists at Children’s Hospital to help him gain weight more quickly. Then at 4 months old he started physical therapy for weak neck muscles. And from that point forward we began introducing more and more therapies - all without any diagnosis - and the hope that he would just “catch up.”

Finally at 27 months, we discovered that Jude in fact had been born with a genetic abnormality on the 15th chromosome (an erroneous error) with an incidence of 1:15,000 live births that was incurable, life-long, and progressive called Prader-Willi Syndrome. While his life remained unchanged, our lives would never be the same.

I recently listened to a podcast about Bravery with Heather Vichery. If you haven’t discovered her work, I hope you do as her message is so compelling. What I learned is that when we find ourselves in a moment of fear or hardship that pushes us outside of our comfort zone, we should take pride because in those moments we manifest bravery.

For some of us, bravery is a choice. We can choose to dip our toes into a challenging situation and rise to the occasion. But for many of us, bravery shows up even when we aren’t looking for it. This is how I would describe our son’s journey and also our own.

Bravery shows up when we fight to establish supports for interventions. It shows up when we become vulnerable in moments of advocacy or fundraising. It reveals itself when our son struggles to rise next to his peers socially, emotionally, and developmentally. It taps us on the shoulder when we embark on medical tests, clinical trials, or exploratory procedures.

After 10 years, I now realize that as parents we wake up each day and put on invisible boxing gloves and consciously fight to empower ourselves and our son to achieve his best life. The same grit and tenacity that followed us in our 20s has now shape-shifted into inclusion, advocacy, speaking engagements, and so much more. For us, it’s not a choice and when we come against strife in these opportunities, or with parent groups, or friendship circles, we subconsciously show up in bravery as we face the internal re-traumatization of the fears we have overcome throughout the last 10 years.

Finally, what we couldn’t have imagined 10 years ago is the gift that we actually received in that hospital room. Our son has become our teacher. He has helped us find a path that is meaningful, challenging, rewarding, authentic, honest, vulnerable and brave.

So today, we celebrate! Happy happy birthday to our Jude.