Before Hopkinton to Boston, a Trip to Children's

The Boston Marathon has a long and proud history of supporting charitable causes. You might be surprised to learn — I sure was — that 20 percent of the field laces up for a cause.

Twenty percent! It’s true: every year the BAA gives thousands of bib numbers to 24 different charitable organizations so they in turn can award those coveted numbers to runners who then raise money for the charity.

Now in its 22nd year, the charitable-runner program has raised more than 100 million dollars (nope, that’s not a typo) for everything from skin-cancer research to mentoring programs. Pretty darn cool, huh?

I wanted to do justice to the flip side of my marathon medallion—my commitment to the kids of Children’s Hospital of Boston.

Those kids, of course, are represented by my patient-partner Grace Briggs-Neal.  Months ago I asked Grace’s mom if I could tag along someday when Grace had an appointment at Children’s.

Now, just because Grace agreed to be my patient-partner didn’t mean she had to let me watch her be poked and prodded; asking felt like an invasion of the Briggs-Neal clan’s privacy. I might have even been relieved if Ginny had said no, or if scheduling didn’t pan out. At least, I could have told myself, I tried.

But she didn’t say no. In fact, she said “sure! Come to the next Myelo Clinic with us!” The next Myelo Clinic just so happened to fall perfectly during my taper (the time when your training winds down as the race day nears).

Now, you know I’m a big believer in signs, so I naturally took this alignment of taper and appointment as proof-positive that this was meant to be. So off we went.

I hadn’t been back to Children’s Hospital since Daughter No. 2 had been pronounced free and clear of her renal reflux some three years ago. Walking through the halls brought back lots of memories. I remembered feeling selfish back then, too, fretting about my daughters’ itsy-bitsy medical dilemma whilst other moms walking the same halls dealt with diagnoses beyond my wildest nightmares.

In emails leading up to this day, Ginny had described the Myelo Clinic as one-stop shopping for the Spina Bifida patient.

To me, a 40-year-old single chick, the experience seemed more like the medical version of speed-dating: Grace was assigned a room and in it we sat as specialists made rapid-fire rounds—the orthopedist, the neurologist, the urologist, the something-else-I-can’t-remember-ol-o-gist—each looking for signs that he or she needed to take further action.

(Note to my rightfully worried family: fear not, I have no personal experience with speed dating. Yet.)

Grace was a popular girl. The room was at several points so crowded that I retreated to a corner and pressed against the wall to make room for more X–ologists in their clean white coats.

They checked her spine. They checked her feet. They checked her belly. They asked her about school. They asked her how she was feeling. They watched her walk. They convinced her to try a more supportive brace. (This was a tough sell—the new brace will extend mid-calf as opposed to the current brace’s ankle height. Grace might be a Spina Bifida patient but she’s first and foremost a girl hitting puberty—she just wants to fit in and it’s hard to do that with plastic velcro-ed to your shins.)

They mentioned potential surgeries to come. Grace said no, she’s had enough.

Ginny asked question after question after question. I was really proud of her. She kept on asking until she ferreted out answers she needed to spearhead her daughter’s treatment. Grace is a lucky girl.

Between the medical-speed-dating action, a nurse named Rebecca checked in and chatted with Ginny about All Things Spina Bifida.  

When Rebecca asked Grace how she had liked something called BLIN’G Camp, Grace’s eyes lit up.

“When are we going to do it again?” Grace asked.

Once Rebecca had left, Ginny told me she couldn’t remember what BLIN’G stood for .

(So I looked it up on, what else, Facebook. According to the Myelodysplasia Program at Children’s Hospital Boston’s page, it’s Better Living N’ Girls.) But it was basically a great big slumber party for a gaggle of teen and pre-teen girls who live with Spina Bifida.

Funded via grant money Rebecca exuberantly secured, BLIN’G meant an overnight stay at the fancy schmancy (and haunted) Omni Parker House. They bonded, got girly-girl makeovers and heard spooky stories courtesy of the hotel manager.

In between, the Children’s staff blended in a healthy dose of nutrition awareness. (Ginny later explained this is sorely needed, as kids with Spina Bifida often become overweight adults with Spina Bifida; mobility issues combine with unhealthy food choices to pack on the pounds.)

I loved imagining Grace at BLIN’G, feeling pampered, loved and comfortable in her own skin. It contrasted starkly in my mind with a not-so-pretty-scene from our shared cheerleading past.

During one particular practice Grace was, well, let’s just say not being the most diligent and attentive cheer chick on the squad. I was approached by a mom who spat, “Isn’t there a ‘special’ team for girls like Grace? The rest of the squad wants to compete and win—she’s holding them back.”

Now, I am not usually prone to violence, but I confess I did want to give that mom a great big old attitude-adjusting smack across the face. (Duly noted the school may politely decline my next offer to chaperone a field trip after that confession.)

Sure, Grace was having a bad night, but we all have them from time to time. She belonged on that team, darn it, cheering alongside her peers. She wanted to be there. (Most days). I wanted her to be there. (All days.) These were 8 year olds, for crying out loud. Couldn’t we just have some fun, learn something new, and not let dreams of silly trophies ruin it?

Now, don’t get me wrong; I still want Grace on that team (figuratively if not literally—Grace has outgrown the Wildcats, and I was long ago put out of my coaching misery). But I also love-love-love knowing that Grace has a community to call her own, where all the girls tussle with the same demons and celebrate the same successes. Perfect counterbalance, yes?

I left Children’s after sharing a snack with Grace and Ginny. (they had yummy-looking pastries while I, still on my uber-strict marathoning diet, was the party-pooper who sipped Perrier.)

As I walked to the parking garage, I couldn’t help but hope that maybe, just maybe, some of the monies super-generous folks have donated to Children’s via my fundraising page would go toward programs like BLIN’G.

Preparing for this run has been such a huge confidence boost to  me. It would be perfect symmetry if some of the funds raised by it went to buoy the confidence of girls like Grace.  (NB: I have zero input as to how the funds raised through my run are allocated. You will be happy to know that those decisions are in much more capable hands.)

What a great way to prepare for Marathon Monday. Ginny and Grace, thank you so very much for letting me tag along. Supporters, thank you so very much for sponsoring this run. I hope you enjoy this little peek into a little part of the great big awesome cause you’ve supported. I sure enjoyed visiting Children’s and writing about it for you.

Christine Johansen is on the Children's Hospital Miles for Miracles team. You can sponsor her run at https://howtohelp.childrenshospital.org/bostonmarathon/pfp/?ID=JC0027 or by texting 4HOPE JC0027 to 20222. Visit her blog at http://irunlikeagrl.wordpress.com/

PS: Sounds like Grace will be at the Children’s Cheering section St. Paul’s Church in Wellesley — that’s just past the 13-mile mark — on Monday. That makes me really happy.