What better time of year than Thanksgiving to acknowledge people, acts and deeds for which I feel grateful? I reread my first blog post written 10 months ago, and it’s incredible that so much has happened in these months. I can remember as if the diagnosis came and thus this blog began yesterday, and at the same time it also feels like another lifetime, and maybe a lifetime belonging to a different Wendy ago.
On Facebook, via the Muscular Dystrophy Association, I came upon a compilation of truths people with MD want the world to know. You may have picked up on this already, because subtlety’s not quite my jam, that I fucking hate MD. If you hadn’t heard or are one of those people who need super explicit language complete with line drawings and diagrams and for those of you in the back, let me say it loudly: I hate Muscular Dystrophy. The Mighty collected responses from people with MD as well as some caregivers including a mom who lost her son to MD, and their responses surprised me not even a little. This one felt especially crushing:
“I can fight with it, but I can’t beat it.” —Bhupender Sharma
Ouch. About once a new moon, I am crippled by a dreadful fear for my son’s future, and that day would fall precisely, exactly on. . . today. The appointment I thought was two weeks out is actually this upcoming Monday, because apparently calendars are hard and denial is such sweet surrender. I’m hyper-focused on the unknown with the sure certainty (of my worst fears being realized) only the clueless can truly assert. MD isn’t my physical pain to carry, it’s my boy’s, but it doesn’t mean that it doesn’t hurt me too. My boy. The article concluded with this quote which kinda imparted hope–
“It’s not the end of the world for some of us.” —Kristin Dutt
but also kinda suggested that it IS the end of the world for some others. Doesn’t it? Rich interpretation on my end probably. Probably.
BUT, back to the main idea here, as the title suggests. I have some thanks to serve up alongside my Thanksgiving turkey and dressing, so I present to you the 2015 version of A Very Charlie Brown Thanksgiving. No, wait. I bet some of you are thinking that I’m going to slide in some gratitude for MD and what it’s taught me, for making me an advocate or making me strong or making me reflect on my place on the planet and what I can do to improve it. Nope. Fuck you, muscular dystrophy. You do not score a seat at my Thanksgiving table, no sir, no way. My dinner guests include these fine examples of the best humanity offers up:
Matt even brings dessert. Our friend Matt has for the last several years, visited on Thanksgiving’s eve to deliver a freshly-baked pie from his oven. I still marvel at his generosity. Thanksgiving pies are his thing within his family, and I’m never not taken by surprise and delight that he remembers us in this way.
To my friend Rebecca, who saved me on the first day, thank you. I went to work directly after we finished the first appointment having been told our son had MD. It was a galactically poor idea, one of my worst ever, really. She directed me to go home, and when I asked, “What am I going to do there, sit and cry all day long?” She replied, “Yes. Because he’ll be home from school soon after that, and you and Tom need to get this out and be strong for him when he gets home.” Hers was the right idea, and I will never forget the look on her face; it was not a co-worker’s face, it was the gentle, concerned face of my friend.
You know how you might not speak to your best friend every day or even every week, but when you make the call, she’s there? She was. Of course she was. Thank you to my best friend, Deb, for being insightful and wise, for letting me talk too much or not talk at all when I so desperately needed both. And for being smart enough to reside in California where it’s warm in February.
I am grateful to live within 20 minutes of the fourth-ranked children’s hospital in the United States. CHW, I’m really gonna miss you when we leave the US.
To my co-workers, who also are my friends, thank you. I’m a lot of work at work on a good day, and when I’m unsuccessful in getting what I think our speech paths deserve and need, I know it’s not pretty. I couldn’t do what I do (even though none of you can exactly explain what it is that I do) without your laughter, your righteous indignation when I need an ally in mine, or Beyonce. You never once said, “No, thank you.” You’d all totally be on my zombie apocalypse team.
Thank you to the only bunch of people on this earth who don’t think driving eleven hours for a concert is unreasonable. It’s remarkable that among this group of former strangers connected initially through Facebook (see? it’s decidedly not the devil), I have forged deep friendships and share more in common with my wonderful friends than music alone. Haven’t we been friends all our lives? I miss you, my girls. xoxo #ketchupandmustard and laughing like teenagers at “here, sign this” at 3:00 AM and our tour bus. . .
Thank you to Barenaked Ladies for providing my life’s soundtrack. Your words and melodies save me every single day. For making ME feel like the rock star after your shows, seriously you guys? Words fail (unless you count like half the previous posts on this blog where words were attempted at least, but, yeah, did in fact still fail). Having my favorite musicians acknowledge me from the stage or don my undies, which is not AT ALL as weird as it reads in print, makes my heart flutter.
To my husband who, if he’s lucky, gets in one word to 153 of mine. . . “Love’s a gamble, they say you can win the lottery, it depends on what you bet.” I won.
Thank you to my little kid for making me laugh so hard I can’t breathe, for your quirky insistence on wearing just one sock as soon as you get home from school (but for the LOVE OF HUMANITY will you clean your shit UP???), for still climbing on my lap to tell me you love me any old time, for being an expert iPod pilot and picking songs I’d otherwise overlook, for writing me notes about what an awesome mom you believe I am, for making up words that mean “I am awesome,” and for snorting with laughter just like your mama–I love you. Boakinshin. You’re so weird.
Thank you to my big kid for making me have to be smarter, for making me have to hone my verbal agility, for making me pay attention–you don’t give a lot away so I really have to lean in–and for helping me find within me the strength and courage to match yours, thank you. I’m so thankful I get to be your mom. You were nine days late leaving the womb, and worth every second of the wait.
My dad says that if, during your life, you can count your true friends on one hand, you’re lucky. That being the case, I’ve been all kinds of hands and feet worth of lucky. Thank you to the friends and the strangers who read my stories here. Your role in the search and rescue mission to keep (find??) my sanity and duct tape my broken heart means more than I can say.