What I learned from my 6 year old son about what it means to trust…


“You don’t have to be great to start, but you have to start to be great.” ~ Zig Ziglar

I have always wanted to be great. To be great sets you a part. To be able to be great will make you a success. Have a goal, focus on the goal, achieve the goal, achieve success. It’s not a radical formula, but it had worked. Outwit, outsmart, outplay.  Be 3 steps ahead and you have an advantage that when combined with dedication and a little bit of luck sets you up for success. I have always known that success required support, teaching, learning but help had typically been offered as people saw my potential.  I worked hard, and then I would be encouraged. A formula that had worked for years in my career…and for a long time, being successful in my career meant I was successful in my life. Then, I had children. My children. Circumstances where goals, dedication and luck would only carry you so far, before medical diagnosis and reality took over as the long term treasure map of what lie ahead.  This caused chaos in my optimistic, resilient, Type A brain. How was it possible that, with enough focus, attention, savvy, and positivity that something might not be achievable. Why wouldn’t I be able to be the voice and catalyst to find a cure for Angelman Syndrome? With enough therapy and hard work, Emma would be like all the other typical children.

At 5, Quinn held my hand as we walked to the first day of Kindergarten.We walked through the metal gate, and watched as he moved his head in his signature head bob, looked around and assessed his new world. He seemed clear on what was about to happen as the fog of sadness surrounded me. We hugged him, told him he would be “great,” and as I whispered in his ear, “I love you,” part of my heart broke. Emma should be here too…it was then that I realized she would not likely ever be here too in the way I had always envisioned…

In first grade Quinn flourished. His 40 year old soul wrapped in a 6 year old body with a sweet voice and curious but wise disposition, Quinn had a higher consciousness. I knew it, teachers knew it, parents knew it, and everyone with a developed prefrontal lobe could tell Quinn has special.  In October of that year, Quinn came home one day and asked me when Emma was coming to Kenter?  I explained that we weren’t sure that it was a good idea and that Emma might struggle there. Quinn looked at me quizzically and a bit dumbfounded as the tried to connect the dots of how she could possibly struggle if he was there, and all his friends, all who would take care of Emma. In his eyes, I saw the reflection of my own childhood. I was projecting, but I am a Gen X parent, isn’t that what I am supposed to do so that I don’t repeat perceived mistakes? But this wasn’t a mistake I had seen before. I remembered the cruelty of children when I was young, to kids who were different or special. Emma’s inability to speak a language that most people can understand overwhelmed me with fear, and the memories of taunting and mimicking that now make my heart break in two.

With the look in Quinn’s eyes cemented in my mind, I gathered strength, met with district and informed them we were ready to mainstream Emma into school. With a heavy heart, tears and trembling we brought Emma to school the first day after the holiday break.  An aide met us, and I walked with Emma to her classroom and in slow motion let go of her as she started her new adventure.  I was terrified.  Each day, Quinn would come home and tell me all about Emma’s day. How he had been asked to go in her class and read, how he had gone to see her at lunch, and how he had seen her on the playground with some of the other girls in her class bouncing to the music. I trusted him to be my eyes and ears on the ground as I lived in fear each day releasing her into my version of the wild.  In her second week of school, Quinn came home and said he wanted to do another version of his lemon-aide stand to raise money for to find a cure for Emma and Angelmans.  I could see my kaleidoscope of tears reflected in his glasses and he waited for me to say yes.  How was it possible, this 6 year old child belonged to me, to our family and to this world?  I hugged him, said yes, and with a suggestion of our family babysitter, Hot Cocoa became the Quinn’s catalyst for a cure. To warm hearts and hands one $4 cup of real or virtual hot cocoa at a time.   Then he looked at me as if waiting…ok, so now what.

I had never been great at asking for help. My version of success was to figure things out on my own and this was only amplified when it came to helping to fundraise for Emma. For Emma, my baby, my angel, I had always felt like I should do something. But it had to be big. A movement. I was a marketing executive, wasn’t this my whole job? I had held a brainstorm early in Emma’s diagnosis trusting a germ of an idea would come, and I would action it. Friends came together eager to help, but what I know is that I didn’t trust myself.  I wanted an ice bucket challenge moment to raise the $30mm dollars in one foul swoop. I had clients that spent $4 million dollars to buy a Super Bowl spot, so that was just the equivalent of 8(ish) Super Bowl spots, surely I should be able to figure that out and make it happen.  The pressure I felt was immense, but the guilt I felt for not acting on it was suffocating.   So at 6 years old, with just a simple request, Quinn didn’t push, but rather pulled me from my narrow world of helping Emma into the world of possibility, but we would need help, something for which I was not entirely good at asking for. I had one problem in my fear of Emma’s day to day, I felt isolated. That we were different than everyone and why would anyone want to help us with something that was really for our family.  But I had no choice, Quinn was counting on me.  So I crafted an email to my mom friends, family  and some moms in Quinn’s class that I knew, but not well. I explained what we wanted to do, that, as they knew, Emma had recently started at the school, and that Quinn wanted to do a Hot Cocoa stand to help find a cure for her and Angelman Syndrome.  I sat in front of the screen, staring, tearing and fearful to hit send. At the time, I probably could not have articulated my fear, but now I realize it wasn’t fear that people would say no, or wouldn’t want to help, but rather fear that I had somehow failed my daughter, fear that people would know I didn’t have it all together, fear that people would think I wasn’t great at being a mother, let alone a mother to Emma. Fear that I would have to show that I needed help and I couldn’t do it on my own. I can hear the click. my finger tapped the key, and off it went. Within minutes, I had responses. How we can help? What can we do? My now dear friend Erin, mocked up a poster and upon my approval had banners made. Another mom called the principal and ask for his support to start including the specifics in newsletters and school communications.  Within hours, people have volunteered to help set up, to bake, to spread the word and to have their children help work the stand.  I couldn’t believe it was all happening so fast. And no-one seemed to know that I had failed my daughter.

As the event ramped up, I decided that we could take the message wider, more broad and give Quinn some more support for his kindness.  I asked Quinn if it was ok if I sent a message to all of mommy’s friend and work colleagues past and present? He said yes, so in another act of what I will call courage, I wrote another email that explained the story of Quinn and Emma being born 3 months early, the journey of being diagnosed with Angelman Syndrome, and the life that has given us so much perspective and a way to understand the importance of kindness and hope in a different way.  I paused, took a breath, thought of Quinn’s trust in me and hit send.  Within minutes, donations for virtual cups of cocoa with messages of support came flooding in. My boss and former bosses showed up with large donations to support Quinn in his mission…I was overwhelmed with the kindness myself. I didn’t stop crying for days and with each act, my guilt subsided, and my clarity and trust grew.

That year Quinn raised $40,000 with the kindness of people near and far. He had a successful real and virtual cocoa stand and all the people in our school came to know Quinn and Emma. Kenter Canyon Elementary rallied and the principal Dr. Terry Moran gave Quinn every platform to share his story promoting inclusivity of Emma and education for the students and parents in the community.  The subtext, we are a family and we support our students. Last year Quinn’s Cocoa for the Cure raised an additional $80,000. The story is remarkable, and one day, I will sit and write it all as even last year, with 2 real life cocoa stands, a virtual cocoa stand and one Lemon-aide stand Quinn felt the swell of true kindness, and me, his mommy came to see what it truly means to be great and to trust in those around you.

Quinn and Emma 2019 CFTC

 

Great is not an achievement. Great is not a goal. Great is a moment you start something with a purity of heart and intention. A moment of kindness is great. A choice to be kind is great. An opportunity to share a message of kindness is great.The opportunity to feel what it’s like to trust in those around you is great.  But you have to start.  Quinn is great. Quinn started. 6 year old, blonde haired, blue eyed, glasses wearing, 40 year old soul Quinn started his quest for kindness by donating $80 from 3 lemon-aide stands outside our house to find a cure for his sister. He just felt it, and asked for help, and did it. It is a simple formula that takes great courage for many of us who have years behind us giving us experience that shapes our perceptions and perspectives. But to strip it all away, can change your entire state of being. Quinn helped me understand that I had not failed, but rather was doing the best I can. He helped me realize to be vulnerable is wonderful and freeing because humans are kind and they want to help. He showed me that when your heart is pure and you trust in them, people will lift you to great heights as they are inspired by your mission to make the world a better place. I am grateful everyday for Quinn’s Cocoa for the Cure. For Quinn’s kindness to the world, and most importantly to Emma. His genuine spirit gives me hope, shows me patience and illuminates what’s truly possible if we stop trying to be great and we just start.

I hope you start something today that makes today ‘yournewfavoriteday.

Hope. Love. Give.

 

 

 

 

 

 

 

 

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