#whywerun

86 Days to Go…

/ Dr. Cookie

Today is February 12, which means that in 86 days, #werun22q will be toeing the line of the Ragnar Cape Cod road race! As we’ve updated on Facebook, this year #werun22q is proud to field TWO teams of runners – that’s 24 people dedicated to running for our community, raising funds, and spreading awareness!

It’s been an adventure here; as a team, we’ve been brainstorming about a way to raise funds that would help as many people in the 22q community as possible! Just like the community we are looking to help, we live all over the country and our children are treated at different 22q clinics – therefore choosing just one felt impossible!

And then we realized. once we got our children past the life-threatening/life-altering complications of 22q (open heart surgeries, palate repairs, feeding tubes, etc) one thing remained – the hopes and dreams that our children would one day become fully integrated members of their communities. We want our children to be successful, have families, hold jobs, be happy; all ordinary parenting wishes.

We chose the UC Davis MIND Institute to be our beneficiary for the 2020 #werun22q Ragnar Relay because their mission aligns with ours. We established the We Run 22q Innovation Fund to help families who are coming to the clinic to participate in research studies get additional information, to help the researchers and medical team of the clinic answer questions and begin research projects in order to receive additional grant money to continue these projects, and to allow the team to bring in more patients from out of town who might not ordinarily have a chance to see this wonderful clinic and it’s amazing team.

We hope that you’ll consider giving a gift in your loved one’s name. We are humbled and thrilled to run for them.

This is Why We Run

/ Dr. Cookie

Not exactly the texts you want to get from your child while driving home from work. Or ever, when you feel like you have done everything right to not make him promises, never lied to him about his abilities, tried to educate him about the alternatives. And that those alternatives are viable options. And that not everyone has to go to college, complete with examples of great people he knows who are successful despite- or because- they did not go to college. We gave him positive role models, had conversations about the things he likes to do and ways we can help him turn those into a career. So how could he come home from school, on “Accepted Student Day”, to ask me these questions? My heart broke for him, for me, for all of us who surround and support him on a daily basis. My parents who dote on him and get him through the mundane daily tasks while I go to work each day. His older sisters and a younger brother who encourage and support his every move, and serve as outstanding role models in their own right. So what do I do? (pull over) Answer him. Cry. Just a little. And turn to my team. My #werun22q team. I would say they are my family but that would be doing them a disservice – you don’t get to choose your family. They quickly embraced me, or as much as you can do that via Facebook chat, and made me think of the reality.

Chris is a kid who has come so far; from a newborn with no cry, anesthesia 13 times before his 6th birthday, struggles with school, struggles with simple things like tying his shoes!, getting places on time, all the doctors and therapists. But despite or because of all that, what he is is AWESOME. Chris is kind, he is thoughtful, he is compassionate, quiet and respectful. He is a certified PADI diver and gym enthusiast. Need to know Eagles trivia, anything about a past or present player? Chris is your man. As parents and caregivers we tend to focus on what we can do for our children, but what has Chris done for me? He has made me a better mother, teacher, advocate for my students, daughter, and friend. Because of him, I am so much more than I would be without him-and because of him I get to have #werun22q on my resume. Thank you, Christopher Stevens, for that!

Jen Stevens, Christopher’s mom