step by step

“I only went out for a walk and finally concluded to stay out till sundown, for going out, I found, was really going in.”

~John Muir

I underestimated the cold as we headed to the Autism Speaks Walk on Sunday. It wasn’t breezy or chilly. There wasn’t a nip in the air. it wasn’t one of those mid autumn days here in New England that hints at winter but just as quickly turns back to remind us of late summer. No, it was none of those things. Instead it was just plain cold. And bitterly windy.

C, one of Brooke’s former ABA therapists (and newly minted BCBA - Hooray for C!) had t-shirts made for the walk. In the interest of team unity (and gratitude to C) I didn’t want to bury the t-shirts under layers of winter clothing. So, despite the reading on the thermometer (a balmy 34 degrees as we left the house), I opted against jackets and instead decided to rely on layers of long sleeved shirts under the C’s Crew/ Team Brooke shirts. Oops.

We had planned to meet everyone there. As we headed into the building for registration (which it turned out we didn’t need to do) and to walk through the resource fair (which turned out to be far too chaotic to even contemplate) I could see that it wasn’t going to be easy.

There was a CRUSH of people funneling in through the gates and into the hallway that would wind around to the track. It was incredibly crowded. It was loud. It was chaotic. It was unpredictable. Did I mention that it was loud?

Brooke was on high alert, but she was hanging in as we met up with the first of our friends. We gave her her iPod and I put her on my shoulders as we found our way through the worst of the crowd.

We ran into my very first bloggy Mama friend Judith, who was running the Autism Votes table. Just as I saw her, Brooke yelled out in distress. The crowd was just too much. Judith didn’t flinch as she said, “You go.” A friend who gets it is such a treasure.

I kept thinking that we’d be fine outside. Brooke loves the outdoors. She loves the wind in her face. Outside, outside, we’ll get outside, Baby. Just a couple of minutes and we’ll be outside.

We made our way through the doors and Luau took Brooke on his shoulders as we met up with four more friends. Katie ran off with an older buddy to check out the bouncy house.

I tried to keep it together, but I was starting to feel lost. I went and took Brooke back onto my shoulders. A purely selfish act. I needed her close. I needed to be grounded.

I am always overwhelmed by the emotion, as my friend April put it, ‘of that kind of a day where people come together for a common purpose.’ It’s an incredibly powerful thing. According to one of the walk coordinators, there were 20,000 people there. When you stop and look around the crowd, it is truly awe inspiring and incredibly humbling. That’s an awful lot of manpower working to make life better for our children.

Our friends were amazing – Ramsey and Mike who drove all the way up from New York to be there. Our dear friends, Stefan and Carole who carved time out of their crazy schedules to walk with us. Their twelve year old daughter who won the ‘what will make Jess cry first?’ award when she told me that she has decided that her Bat Mitzvah project will be dedicated to Autism Advocacy. My dear friend, Megan, who single handedly juggled her three kids schedules so that she could be there with her sweet little daughter. You all make our lives so much richer for your friendship. Thank you.

To all of those who gave your hard earned money, thank you. Because of your generosity Team Brooke was able to contribute over $20,000 to the $1,000,000 (and counting) raised that day. I am grateful beyond expression.

Brooke squirmed off my shoulders halfway around the track. “Mama, get me warm,” she said as her little teeth chattered. I tried, but the tailwind was becoming a headwind as we rounded the track. I held her tightly against me, but it wasn’t enough.

“Boots, do you want my scarf?” (our neighbor’s loving nickname for her, from her favorite Dora character)

“Brooke, take my hat.”

“Brooke, you want my vest, honey?”

“Here, little one, take my fleece!”

One by one, our friends offered up their clothes. They dressed my baby in a colorful tapestry of loving warmth. It said it all.

We made it as far as we could until Brooke just couldn’t do it anymore. We found the quietest place we could, just inside the doors, away from the madness outside. Everyone finished the walk and we did our best to cheer them in.

On the way out, my dear friend Megan enthusiastically said, “Same time next year!”

And it all came together – why I felt so empty, so lost, so sad on such a hopeful day.

BECAUSE WE WILL NEED TO DO IT ALL AGAIN NEXT YEAR.

Because the fight is not a sprint, it’s a marathon.

Because I felt like I was running as fast as I could.

Because my friends still long for words.

Because advocacy doesn’t get to rest.

Because, as much as I know it,  I still have to be reminded that Brooke won’t outgrow Autism.

The walk was beautiful and wonderful and fruitful and rewarding and fulfilling. And it was hard. I laughed heartily and I cried quietly. I was overcome by emotion. I was at once exhausted and energized. We were surrounded by the selfless love and unflagging support of an incredible group of people.

In short, it was a perfect metaphor for the whole journey.

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10 thoughts on “step by step

  1. Dagnabbit. I should know by now that I need to get out the Kleenex before I read your posts.

    Everybody offering their wraps to Brooke just did me in… and then the reminder that we are, indeed, in it for the long haul.

    Hugs and blessings. And, way to go!

  2. Jess, that picture of Brooke really does say it all. I’m blown away by all the pure love and support for our kids. We had similar struggles at the Walk (which I blogged about as well). Still grateful for the experience and still bummed I didn’t get to see you and meet your beautiful girls!

  3. I am with you heart and soul, my love. This would be about the time, someone would tell me “to use my words”. I find that I’m out of them at the moment.

  4. Congratulations Team Brooke!! Draped in all your friends love, that’s just oozing with metaphors, isn’t it!! I think she looked beautiful!!

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