About four years ago I sat in a classroom with Jessica, who is pictured with Ava, Ella and Henry, earning credits beyond our Education degrees respectively. She is a teacher in my district. We didn't know each other but we had the commonality of teaching in District 205. We become acquaintances.
At that time, Lindsay and I had our first baby, Ava. She must have been all but 6 months old. The spark of life, that was to be Henry and Ella, lie waiting in the apple of our eyes. SMA was nowhere to be found in our world. We had never heard of it and wouldn't hear of it for a few years to come.
When the class was over, Jessica and I went our separate ways; back to the lives we had built with our spouses. Occasionally we would see each other at District functions; for the most part, though, our lives remained separate.
As the story goes, Lindsay and I brought Henry into the world and 20 months later, Ella joined us. Fourteen months after her birth our worlds changed forever as we were given the diagnosis of SMA for Ella.
Almost two full years passed when I received an e-mail from Jessica. She reminded me of our acquaintance and offered to raise money for Ella through an annual "Bar Bike Rally" that had been in existence for the past 21 years...this upcoming one being the 22nd Annual.
The concept is brilliantly simple. Gather a group of people who love to support others while riding their bikes from one establishment to another...enjoying the fruits of each establishment along with the comradery of peers. Throw in some raffle prizes, adorn the participants with matching shirts, and you have yourself a wonderful fundraiser.
We humbly and graciously accepted Jessica's offer and she set the event in motion.
We humbly and graciously accepted Jessica's offer and she set the event in motion.
On September 15th we brought our whole family to the first establishment of the bike ride (Stulgin's Park Boulevard Tavern in Villa Park) to meet the many people who came out to show their support. We later found out that traditionally the participants are not aware of whom they are helping. They are usually told this information after the day is over at the last establishment. Watching the expressions on the participants' faces as they interacted with Ella brought joy to our hearts. Ella loved seeing the people; she even requested to sing "Old McDonald" with a former co-worker of mine from Hephzibah Children's Association where I worked some 14 years ago (thanks Rick, for singing with her).
I spoke to the group of 200+ people before they embarked on their afternoon journey that would take them through Villa Park and into Elmhurst. After thanking them for their time and generosity--not only for us but for the many before and after us, I found an opportunity to speak to them about SMA. As the words were flowing from my lips to their ears about the statistics, the etiology, and the prognosis of this disease, it felt surreal to mention Ella's name in that context publicly. The place fell silent and as I looked out into the crowd I saw each person standing seemingly perfectly still. It was as if their bodies were on "pause". What most captured my attention was their eyes. Every pair of eyes were on me yet they were not looking so much at me, they were looking from their own souls into the soul of Ella and all those were have been, are, and will be affected by SMA. I noticed sets of eyes filling with the tears of compassion as I spoke of her disease. I witnessed sets of eyes that clearly were hearing about SMA for the first time and they exuded an almost disbelief that this is the first time they've heard of a disease that is considered the #1 genetic killer of children under age two; and that 1 in 6,000 live births are afflicted with SMA; and that 1 in 40 of us are carriers of the recessive gene responsible for SMA. I saw eyes that, upon my last few words, shifted their gaze downward, possibly thinking of an experience that had been brought back to them through this experience at hand. We all have struggles. We all have loss.
We all have something else...
...each other.
Through no efforts of her own, Ella has brought so many people together and shown us, time and again, that there are beautiful people out there who will help. Whatever may shine through the eyes of those we come in contact with, it was apparent to me, on this day, that behind those eyes there resides one spirit...a spirit of hope.
Our family deeply thanks those who participated in the Bar Bike Rally.
Thank you Jessica.
Sincerely,
***************************
The video we made for the Bar Bike Ride
"Her Hope"
Music by Glass Pear ("One Day Soon")
