Monday, May 18, 2015

The Color of Forgiveness

I'm sitting here looking at my Mother's Day cards from Quinn -- one store-bought that starts "Dear Mommy, Thank you for tucking me in...", one handmade with a crooked heart drawn on the front. And I'm crying all over my kitchen table. I hugged Quinn extra hard at preschool drop-off today, his last day before the school year ends.


In the last few weeks, our family has been facing the continuing decline of Chris's mom's health, which has meant Chris has been traveling up to northern California to spend time with her every other week. Between Chris's travels and my time in DC, we've hardly spent any time together as a family in a month.

Quinn and I FaceTime with Grandma Maryann a bit, when she's feeling up for it, but Chris doesn't want how she's doing now to be Quinn's memory of her, so it's unlikely the two of us will see her in person anytime soon.

At school, Quinn drew a picture for me for Mother's Day, two stick figures holding hands. He tells me, "Mommy, that's me and you!" But on closer inspection, I realize both faces are frowning.

"Why do we have unhappy faces, buddy?" I ask.

"Because we're sad about Grandma."



All of this apart-ness and upheaval and emotion has certainly taken a toll on Quinn. He's alternately sweet as can be or acting out, defiant about every single thing I ask him to do lately, whether it's brushing teeth or turning off the TV or not running away from me in a crowded grocery store.

Yesterday, as I was driving Quinn to a new park to play with his friend Sydney, I was trying to focus on where the map was telling me to turn, trying to find parking, trying to communicate with Sydney's mom about where to meet without taking my eyes off the road, and Quinn -- in his utter and complete excitement about seeing Sydney -- would not stop asking me, every thirty seconds, how much longer we had until we got there. "Quinn! Can you please be quiet so I can focus on the road?" I asked him more than once, then felt a stab of guilt for being an asshole.

At school drop-off and pick-up the last few weeks, I find my conversations with other moms gravitating toward how tough this age is. This age being 2 to 4? 5? We wonder when it gets easier, joke that we need happy hour at three in the afternoon, talk about pulling our hair out. And even as I participate, I know better. I know how precious this life is, what little (if any) time any of us are guaranteed, how -- difficult or ornery we might all be on occasion -- my time with my boys is everything.


This morning, with Chris back in town, I went for a hike. I was heavy-limbed and clumsy. I twisted my ankle (it's fine) and felt unsure of my steps a good portion of the way. Eventually, battered and out of breath and frustrated, I made it to the top.

A photo posted by Jen Campisano (@jencampisano) on

Back down the mountain, my head clearer than it had been in days, I checked my phone and got the punch-to-the-gut news that my friend and sorority sister Jenny's six-year-old son Michael died last night. It wasn't so much a surprise as it was a stark reminder of the brevity of our lives.

Michael had been diagnosed with a rare brain tumor a week before he started kindergarten last fall. Kindergarten.

That one pretty much takes the cake for cruelty, Universe.

And yet, Jenny and her family did not approach Michael's cancer with anger or bitterness. They celebrated his life. They spoke out to raise awareness about (and a lot of money toward) childhood brain cancer. They made to-do lists and checked them off every day, a tally of their accomplishments together as a family.

At his memorial later this week, they're encouraging everyone to wear yellow, Michael's favorite color. Yellow, the color of sunshine and hope, optimism and new beginnings. The color of forgiveness.

So, in Michael's honor, forgive yourselves, parents, for the occasional times when you're not doing your best. Then go hug your kiddos a little closer, a little tighter. You could probably both use it.

You can read more about Michael's inspiring story here and I encourage you to make a donation to the fund created in his honor by clicking here

And I'll close with Jenny's own words from that Huffington Post article:

Jenny said she wants to remind parents to "enjoy every precious moment" with their children.

"The truth is that I often complained about how hard it is to be a parent," she said. "I do not back away from that sentiment -- I still think it is hard -- but I wish that in some of the moments when I was feeling overwhelmed or frustrated, I had the perspective to know that I was the luckiest person on the planet to have those kids driving me crazy."

Tuesday, May 12, 2015

My Teammates In Their Own Words (Plus A Few of Mine)

I've mentioned once or twice that I'm about to lose the second toenail on my left foot. The same one on my right foot is in questionable territory. For about a week after the walk, every time I pressed down on my left toenail, a stream of blister liquid would squirt high into the air like the fountains at the Bellagio. The erupting has finally subsided, but my toe still throbs at the end of the day, a steady drumbeat bringing me immediately back to the 39.3 miles in Washington, DC the first weekend of the month. Plus another 4.8 miles criss-crossing Capitol Hill the Tuesday afterward to advocate to whomever would listen for an end to breast cancer. My feet were not entirely pleased, but they will recover.

A few of us in front of President Obama's house.
As my friend and veritable co-captain Ginelle says, it's not like I'm losing another body part. The blisters are painful. But as many shirts and temporary tattoos over the weekend read: "Blisters are temporary. Fierce is forever." And toenails grow back. Breasts, sadly, do not.

Ginelle brings me to near tears every time she describes the metaphors surrounding the walk: the pain and frustration when you don't think you can keep going, but then you remember it's temporary. It's only two days. The walk certainly isn't chemo, but it gives a peak into the determination necessary to push through when the going gets rough. Looking around, there are women and men in far worse shape, forging ahead despite their obvious limping. There are kids who've recently lost their mom and who stop at every mile marker to wipe away their tears and take a proud selfie. So you see all these people marching onward, and it pushes you to keep going, too.

I asked my teammates, many of whom were first-timers, for their thoughts on the walk. I am beyond flattered by what they had to say about me, and largely because of them I'm inspired to do this all over again next year. Here, in their own words, are some of their descriptions of our weekend in Washington.

Amy: Being part of it was simultaneously so difficult and so meaningful, and feels at the same time like a big accomplishment and yet also such a tiny drop in a giant bucket for what is needed. My main feeling seems to be thanks - thank you for letting me walk with your team and your friends, and thank you for letting me lend the support I can. The idea that maybe a few dollars that I helped raise will give women with no health insurance access to mammograms, or feed a few families when they are wanting to do anything but cook for themselves, is such an important one for me. And the hope that this foundation supporting mets research so that women like you can continue to be such amazing role models, mothers, and writers is just more than I can think or even talk about very eloquently.

Ginger: I now have an appreciation for the number 39. One of the most painful but rewarding experiences of my life. Despite my mental resolve to keep going, I kept feeling like my body was failing me--a perfect illustration for what survivors endure. Thank you to everyone who has supported us--you were all with me yesterday and today.

My 39 miles were dedicated to my mom, Betsy Elliott, who is a survivor of DCIS breast cancer (that is, ductal carcinoma in situ and caught early, thank goodness). She is recovering fully after a unilateral mastectomy in March of this year.

Now that my feet have begun to recover, I'm already considering next year's Avon Walk.

The 16 of us crossing the finish line on day 1.
Jess V.: It's amazing how many tears and thoughts that come over you as you walk this long walk. I feel so honored to have been a part of this team. Thank you, Jen, for leading us through a wonderfully rewarding weekend, yet again.

As I told [my husband] and the others who asked me how the walk went - this one was harder. I didn't train. I bought the wrong shoes (without much support). I said with confidence "I never get blisters" and got several epically huge blisters. By mile 10 on the first day I started to have significant tightness in my legs and difficulty walking with a normal stride. But it's really easy to get over that pain when you walk by a woman clearly in the process of fighting cancer. Suddenly your legs don't hurt as much and you realize how easy your pain is versus theirs.

I can't wait to do it again next year. I'll be signing up tomorrow just because I'm too wiped out to do it right now.

It was such a wonderful experience walking with you all. Looking forward to Avon Chicago!

Beth V.: You people are all so amazing, not only for participating in this amazing walk, but also with the fundraising. For a team of 16 to raise as much money as we did is incredible (obviously a testament to the smarts and savvy of our team, and especially our team leader, Jen!) As for the walk itself, I appreciated the collaborative nature of our team and how we stuck together. I didn't expect that a group our size would--especially in light of the many potty breaks--and was pleasantly surprised. Our solidarity as a team and commitment to an important cause so close to all of our hearts made this weekend particularly special for me.

Thank you all for a fun, positive, successful and memorable experience.

I look forward to seeing everyone again soon!

The kids who brought me to sobs on the trail, with a photo of their mom holding them as toddlers hanging from their capes. She died of metastatic breast cancer last year.
Kacey: My impressions from this weekend all come down to community. I was so moved by how many people came together to make this walk happen for us. I was completely blown away by the donations I received. The number on my personal page is a little off because I shared a lot of the donations I received with team members who were under the minimum a few months ago, but I think I raised a total of close to $8,000. Most of my donations were small amounts - it was a very grassroots effort! And many donors gave more than once.

When Nora and I organized our wine night fundraiser, we ended up with more silent auction prizes than we knew what to do with because businesses and friends were so generous. We were so worried that the night would be a bust and we'd end up giving away these amazing prizes. But we were shocked by how many people came out and the volume and amount of bids we received. It was truly inspiring.

The weekend of the walk, we had so many supporters. Dan and Sarah hosting us for a pre-dinner walk, Tim traveling down from MD to walk a few miles with us, my own husband trekking all over DC to find us so my kids could hold up a sign for a few minutes (and the baby could eat!), plus all the husbands behind-the-scenes who watched little ones for the entire weekend so their Moms could do this. That doesn't even include all of the strangers who stood on street corners, dressed in crazy outfits, cheered, handed out candy, high-fived, and generally kept morale up.

By mile 10 on Day 1 (just 1/4 of the way done), I really didn't think I would be able to keep going. Everything from my waist down hurt. But I thought about everyone who supported my efforts to be there and everyone who was relying on me and I just kept going. It was only two days of my life and nothing some ice and an epsom salt bath couldn't cure.

If being out there and being a part of the community that made this walk possible has in any way helped put an end breast cancer, then I'd walk it a thousand times over (perhaps after training a bit more, though?). Thanks so much for letting me be a part of this incredible team, I really do consider it my privilege to have been there.

Too many names.
Jessica D.: I was inspired to sign up for the Avon 39 in D.C. right after Jen and Team Booby and the Beast completed their 3rd walk in 2014 in San Francisco. I continue to be amazed by Jen’s strength, as well as the advancement of breast cancer treatment, and wanted to do all I could to raise money to continue research efforts in the field.

As I tend to do with any trip, event, or race (guess it’s the engineer, or now the ‘mom’ in me), I plan, make lists, check them twice, and worry about the little details. I set out on a training plan walking miles and miles around Tempe before dawn, rallied lots of support among my family, friends, and co-workers, and made sure I had all the right gear for the big weekend.

However, nothing can quite prepare you enough for how incredibly moving this event is. The support of honking car horns; the spectators providing countless high-fives, candy, baby wipes, and some tunes to put a beat in our steps; and most importantly, the bond among our team members that was solidified throughout the journey were more motivating than words can even describe. I am truly thankful for being a part of this memorable experience, and can’t wait to do it all over again! Thank you, Jen, for letting me be a part of it all!

Shelby: Every year I'm amazed by the impact this walk has on me. To say that walking alongside Jen and an incredible group of amazing women and men, for the third year in a row, is a remarkable experience feels like such an understatement. The weekend is absolutely amazing, emotional, inspiring, challenging, empowering, and rewarding as we raise money for breast cancer research and to fund access to care for those without the means. As soon as we cross the finish line, hand-in-hand with our awe-inspiring Team Captain, I look so forward to next year's walk. Thank you Jen for continuing to share your story, for inspiring so many, and for allowing us to share this incredible experience with you. I feel honored to have been a part and to have walked alongside each and every one of 2015's Team Booby and the Beast. Here's to Chicago 2016!

Gretchen: There isn't much to say that hasn't been said. I just wanted to say THANK YOU, Jen for inspiring us and for the opportunity to walk with you. Team Booby and The Beast is a powerhouse! This amazing group of men and women surrounding you is a testament to the absolutely fabulous person you are. Team, I was honored to walk with each and every one of you.

At the finish line on the National Mall.

Friday, May 8, 2015

Lobby Day 2015

It's not every day you get to sit down with one of your state's Senators and watch as his shiny happy demeanor suddenly shifts -- his jaw visibly drops -- as you tell him your story about being diagnosed with metastatic breast cancer at the age of 32, as you tell him you'd like to see an end to breast cancer so you can watch your son grow up. It's not every day you get an audience with that much influence.

But that's exactly what happened on Tuesday, as I logged another 4.5 miles walking all over Capitol Hill in Washington, D.C., advocating on behalf of the National Breast Cancer Coalition, yes, but also on behalf of myself and all of us living with a diagnosis of metastatic breast cancer. After all, NBCC's goal of seeing an end to breast cancer is the same as mine. It is all of ours. And what were a few extra blisters in the name of ending this disease? My feet this week are getting their own post. Stay tuned for that.

I don't know exactly which of the seven offices we visited from the Arizona delegation will support our legislative requests, which included signing on to the Accelerating the End of Breast Cancer Act (H.R. 1197 / S. 746) and maintaining current funding levels for the Department of Defense's Breast Cancer Research Program, neither of which should be partisan issues, but you just never know in DC.

The Act creates a commission to take a look at the various research efforts happening around the country and recommend a way to fast-track those that are most promising while reducing duplicative efforts. It would be a finite commission, ending in 2020. It would require no congressional funding. It seems like it would be an easy ask, but amazingly, it has struggled to get signed into law.

The DoD program provides grants to people like this innovator here in Arizona, who is working on a breast cancer vaccine, among other things. Think about that for a minute. Can you imagine a world in which no one has to worry about developing breast cancer? In which generations to come might only know breast cancer as a disease their grandparents had to contend with? The idea gives me goosebumps.

We asked our delegation to co-sign the legislation before Mother's Day, as a gift to moms (and their kids) everywhere. We've already gotten notice that a few offices want to cosponsor and will be doing so today. I hope our advocacy efforts pay off and this legislation gets signed into law. I hope this commission gets formed. I really hope we see an end to this disease in my lifetime. Now that would make these blisters worth it.