My Kind of Town: A Tale of Two Marathons

She did it!

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She inspires me too! Sign by her friend Heidi, who biked and Ubered the route to cheer Lauren to the finish.

My niece Lauren conquered the Chicago Marathon yesterday.  Not that there would have been one shred of disappointment otherwise, but she ran every, single, agonizing step in her 26.2 yesterday.  Every.  Single.  Step.  Agonizing is my word, not hers.  That girl smiled every step of the way, and I swear on all that is good and true in this world, her makeup didn’t even run.  Not even after pounding out the first eleven or so miles in the pouring rain.

Until several months ago, Lauren wasn’t a runner.  She was an incredibly fit, young twenty-something graduate student (speech-language pathologist in the making–so, so proud!), but not a runner.  Like not even hahahaha, I’m a runner.  But Lauren committed to running the Chicago Marathon as a member of Team Momentum, the Muscular Dystrophy Association’s support and fund-raising team, and suddenly last winter she sprung it on us that she’d committed to a full-on 26.2.

She sent me this photo early yesterday morning, and I couldn’t even talk.  My son and I were ready to hop the Hiawatha Line to Chicago’s Union Station to be part of marathon madness, and when I saw the photo, I was grateful for waterproof mascara.  I couldn’t talk.  My husband was all, “What’s wrong, what’s wrong???” until I showed him the photo.  And then I shared it with the world on social media, because goodness should be shared.

Ninety minutes later, still seated on the train, my boy and I spied runners crossing over the Chicago River from Union Station, and because I am a freak about time, I felt like if we didn’t get out there RIGHT NOW, we would miss Lauren.  It took about forty minutes, in a not-light kind of rain, to find my sister- and brother-in-law in the throng.  And let me tell you what an inspiring, encouraging throng it was: positive energy flowed from every cowbell-shaking, sign-carrying, hollering-for-anyone-whose-name-or-team-name-could-be-read-from-their-jerseys sideliner as the marathoners passed by.  The runners smiled, waved, cheered, thumbs-upped back to their adoring fans.  If you weren’t moved by the buzz, even in the deluge, your heart must be made of stone.

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My kind of humor

We first spotted Lauren at the 13-mile marker, the halfway point.  She ran over to us, hugged us all–enormous grin the whole while–and kept hammering.  I cried.  We spotted her at mile 17.  I cried.  We spotted her at mile 20, still radiant, and I cried.

When she began to pick up speed at mile 25, I cried.  Afterward, Lauren said that when she saw the one mile to go marker, she just picked it up and, I believe her word was sprinted to the finish.  I can’t disagree.  Look at her!  Smiling still, waving, taking it all in, even faster than the 25 miles before it.

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After her thermal blanket and medal were around her shoulders and neck, we hiked another mile north to the MDA’s race team headquarters, a snazzy, downtown workout facility.  My sis- and bro-in-law joked that we couldn’t possibly complain about our own aching backs, knees, ankles after, you know, Lauren had COMPLETED A MARATHON, but I was beat.  They were beat.  My son was barely hanging on.  BEAT.  As we trekked that last mile, (well, technically my boy and I still had another mile-plus walk back to the train station), my kid admitted finally that he needed a break.  And snacks.

See, the whole reason we’ve embraced and been embraced by the MDA is because my son has muscular dystrophy, and while Lauren killed 26.2, my boy crushed his own 10.4 miles yesterday.  And yeah, I cried. It was the theme of the day, after all.  The boy complained not once, not ever, but did agree that maybe hailing an Uber from mile marker 20 to mile marker 25 would “be nice.”  My son gets this posture when he’s fatigued, and he held that position for much of his day yesterday.  But you’d never have known how exhausted he was by speaking with him.  My son isn’t one with the social gifts, and he’s fourteen, so not what you’d call “chatty,” ahem, but he smiled for the camera as his weepy mother demanded.  Well, sorta.

So the moral of the story is this:  As Lauren demonstrated, you can do just about anything you set your mind to.  You can change the world for a kid with a horrible muscle disease, and lead by an example of determination and goodness.  You can reduce your aunt to a blubbering mess repeatedly, and she’ll only love you more for it.

We usually spend our days in Chicago looking up at its marvelous architecture, but yesterday was spent looking ahead, and the view was magnificent.

Chicago, you really are my kind of town.

So You’re Aware

September 30 is Limb-Girdle Muscular Dystrophy Awareness Day.  Now you’re aware.

Because we haven’t opened our son up for a muscle biopsy, a diagnosis of LGMD is merely a hypothesis.  It’s consistent with his grandfather’s diagnosis, but its most frequently occurring subtypes–there are more than thirty–did not show up in a DNA screen when our son was first diagnosed.  Limb-Girdle MD is the front-runner for official diagnosis.  When we became a member of the MD “family,” (yes, quotes around family, because you know I wish my son had other relatives, like maybe MENSA or the MLB or any of the thousands of organizations NOT borne of medical necessity) I was very much in favor of medical testing in any or all of its forms.

I wanted to know the name of the bastard attacking my son.  I wanted to look it in the eye, stare that monster down.  I wanted to know everything so I could arm myself with data, facts, and the predictive information every mama bear needs to clutch to.

Instead, my husband dug in his heels.  Dug in passively, anyway, he’s not so much the stand taker than I am.  He did not want or need specific data points to be my kid’s dad.  He plodded along, blissfully unaware (my phrase, not his), just being the same ol’ dad guy he’d always been.  He did not support a surgical biopsy.  The diagnosis would not change anything for our son, he believed, all it would do is provide a place to hang our hats.  It’s not the only point on which we disagree(d), but elective surgery is kind of a big deal, and not a 50% kind of deal, you know?

Over time, together WE decided that if and when our son wanted a diagnosis, we’d support him in that, and by “support,” of course I mean pay for the procedure if that time falls when he’s still under our insurance.  It’s a day surgery.  We came to agreement that if our son got a point where his curiosity about his own health status or medical or treatment necessity came into play, the biopsy would serve its purpose then.  For him.

My boy was eleven when diagnosed; it’s hard to believe he’ll be fifteen in a few weeks.  So much has changed, but not his diagnosis.

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This photo does not belong to me, nor does it likely belong to whomever swiped it from NBC, but you see where I’m going with it, right?

Today is LGMD Awareness Day.  Click here to learn about LGMD, to heighten your awareness, as it were.  It seemed absurd to me that an awareness day was a thing back in what I now think of as my “early days” of the MD ride.  But as I find myself staring down high school physical education class with abject terror for my son, I would love for his gym teacher to be aware, you bet your booty.

My niece is running the Chicago Marathon next Sunday, a member of Team Momentum, the Muscular Dystrophy Association‘s fund raising and awareness squad.  Y’all, the girl is running a marathon for my boy, for her camper, for her grandfather.   She’s a remarkable young woman, whose bravery and commitment brings me to tears every time I think about it.  Go, Lauren!  We love you.  Aaaaand, yeah, I’ve got the tears. . .

‘Tis Better To Give Than Receive

Merry Christmas, Everyone!

Our family is not religious, we are of the secular Christmas card-sending/Nutcracker Ballet-attending/gift-exchanging/reveling in the joy of the season lot. Santa will not be shimmying down our chimney tonight, and I miss that magic we shared with our children over the previous thirteen years.

I have been positively gleeful this December. That is not hyperbole. I am late in my preparations, but a smile–sometimes broad and hearty, others sheepish as if to say, “Holy schnikes, I have a crap-ton to do. I’ll get there, I always do!”–has been a fixture this fa la la la la la la la la.

I received a gift yesterday. This gift came in the form of a check and explanatory letter. When you see shades of doubt slivering through the fabric of your faith in human decency, remember my friend and the story I’m sharing here. My friend is an intensely private person, so a few edits were made in order to respect that.  I will never betray the trust she’s put in me over the years.

Dear Wendy,

When I was growing up, my family always watched the Jerry Lewis Telethon on Labor Day weekend (confession-not really because of muscular dystrophy, but because there were only three or four channels to watch).  We tuned in to check out various performers and entertainment and made sure we watched the end of the show to see how tired Jerry looked after staying up all night.  We thought it was really cool and crazy that he didn’t go to bed all night long.  We watched him sing at the end of the show on Labor Day evening as every year they showed record breaking dollars donated.  Jerry always got emotional and cried while singing his closing song and he looked all disheveled with bags under his eyes, shirt untucked, hair a mess–we loved to make fun of him in our immature kid-style way.

One year, we decided to help raise some money for MD.  We took our red wagon and went knocking on doors in the neighborhood asking people if they had empty pop bottles that they could give us to return to the store for the deposit refund to raise money for MD.  When our wagon was full, we pulled it home and transferred the bottles to the back of the station wagon and went out to more neighbors.  When the station wagon was full, mom or dad drove us to the grocery store where we cashed in the bottles then we would go back home and repeat.  At the end of the day, we donated our daily profits to MDA.  We did this for years and I think of it fondly every Labor Day weekend.

I now also think of you and your family on Labor Day.

I have not donated to MDA since I stopped collecting pop bottles.  Jerry Lewis inspired such a fun family activity and obviously brought great awareness to MD.  With Jerry Lewis’ passing this year, I thought it was a good time to make a donation.

Please help my check find its way to make the donation.

I admire how you handle all in your life and can only imagine how difficult some days must be.  Your son is very lucky to have you for his mom.

I’m not crying, YOU’RE crying!  Of course I’m crying.  I read parts of her letter at least three times before I was able to finish because my eyeliner was running by the second paragraph.  What’s the right word for how my friend’s kindness affected me?  Touched?  Moved??  Ugly cried??? 

My niece Lauren, who after my son’s diagnosis became an MDA Summer Camp counselor, has now committed to the MDA’s Team Momentum for 2018. She will be running a marathon to raise funds, awareness, and hope for individuals and families with muscle disease. Half my friend’s donation will go to support Lauren’s marathon endeavor.  Click here to read about an amazing example of today’s youth.  Team Greater Than Gravity strolls in its fourth annual Muscle Walk this spring, so the other half will be the donation that kickstarts our 2018 Muscle Walk team effort. Donations made to the MDA before December 31 will be doubled, up to $100,000.  That’s a lotta marshmallows toasted around the campfire, friends.

My Christmas wish for you all? That you have the good fortune to be surrounded by goodness, light, and love.  I’ve never known a time where I didn’t find myself among good friends.  Because of my son’s diagnosis, I’ve borne witness to good friends doing great things.  Still not grateful exactly for MD, no, but for the goodness and light it has illuminated in others?  That is my gift.

It’s Christmas Eve and it’s snowing.  And that is the lesser of today’s miracles.  Thank you.

xoxo