This Saturday was one of @'s favorite days of the year, the annual March for Babies walk. He was six months old and still on oxygen the first time I did the walk, but he has been there every year since, making it his sixth walk and my seventh.
In @'s world, the first few years were about the balloons and the noise, then it was about being a surviving preemie, and now it's about helping babies and walking for his twin brother.
It's a tiring day for me, both physically and emotionally. It's a reminder of
losing N, but it's amazing to see so many people galvanized to make a difference and be in the midst of many people who share some part of our experience.
We joined up with the Cisco team in the morning -- all 100+ people. A team I started in my spare time six years ago is now an executive-led $260K+/year fund-raising, awareness-bringing, community-building machine. (Don't let anyone ever tell you that you can't make a difference. I did. You can.) Let it be said: I work for an amazing company.
@ and I wear stickers that say, "I walk for ______" with N's name on them. This year, someone said, "You must be N." @ very simply replied, "I'm @, N was my brother. He died. That's why we're here."
After the opening speeches, @, Luke, and I did the family loop and then took a detour. We could hear the music and see the rest of the walkers across the lake, but @ wanted a little space from the chaos. It was fun watching him toss rocks, chase driftwood, and be a normal kidlet in the middle of it all.
The nurses at the Good Samaritan NICU tent knew @'s story as soon as they heard his name. They were excited to learn that he has experienced very few of the problems doctors predicted he would encounter. He posed for proudly for a "success story" picture and we promised to send a letter to share our experience with current parents.
A video about family teams came on the giant screen next to the stage. @ migrated in that direction. By the midpoint, he had both arms in the air, pumping his fists and cheering on the families and babies on the screen in his own show of solidarity. All his own.
Later, the Cisco video came on (see bottom of post). He needed to be front-and-center where he could watch the whole thing and had me pick him up for the last part so he could cheer himself on during our speaking part.
@ decided he wanted to dance to the Burnt Factory Band. It didn't bother him that no one else was dancing, so @, Luke, and I went and danced. My grace can best be described as "remember, she's the one of fell out of the tree." And dancing with a 42-pound kid and a leashed 80-pound dog is not an easy feat, especially for someone (like me) with two left feet. It was more like six left feet and a cute kid.
On our way out, we stopped by a table where we could write letters to parents and NICU staff. He wrote his own thank-you note to the nurses.