Finding His Tribe

The Fine Print:  If you know me in the real world and know my son, you have to promise, no you hafta pinky swear you will never make mention of this post to him. Never. Like for reals, never.  EVER, OK?  If you know me IRL and feel like you might just maybe have to say something to my boy about it, don’t even read this. Just walk on, man.  It’s one thing for me to write about my maneuvering his MD, but this post is about my reacting to him reacting. See, it’s a kinda meta piece I’m working out here.  When your heart breaks into six million pieces for your child, you don’t want to be Janie One-Note, so in the real world you minimize this, and talk about other things, more upbeat things.  Things like, “Hey, my little kid was named MVP in Saturday evening’s baseball game by the opposing coaches” and “Yeah, we stayed in a 1950s-era fleabag roadside motel for the tournament weekend and $180 per night was quite literally highway robbery, but seeing the kids have a team-wide blast of a pool party Saturday night was worth the price of admission.”  Things where you can crack wise and make people laugh instead of worry about your mental stability.  Here is where I get to (have to? need to?) lay it down, but it has to be our little secret, OK?

For starters:  the Muscular Dystrophy Association.  Seriously.  Kelsie and Stacey–you are two amazing young women.  I am so happy I get to know you.  Though a tiny part of me still wishes I didn’t have to know you because I will always and forever wish my kid didn’t have muscle disease, I am grateful to tears at least once daily (still) that you are the face of the MDA for me.  I know there are so many more MDA staffers and volunteers I must thank, and I will trust you to do that for me.  I blubbered through camp sign-in and sign-out, and you will have to know that I’m a competent communicator in most facets of my life. I can’t make it happen around you two, not quite yet, but I feel like you’re wise beyond your years when it comes to dealing with parents like me.  Holy crap, are there others like me??  You poor things!

For seconds:  My generous friends, family, and yep, anonymous (still) stranger donors to our Muscle Walk Team Greater Than Gravity.  You covered 5.5 children at Camp Wonderland this week, indirectly or directly I don’t know–I’m not the accountant here.  Please know that every single penny of your contribution is worth it for those kids.  This I know for a fact.  And yeah, me here with the tears again.  Thank you.

For thirds:  Dillan, my son’s individual counselor.  You are going to make an incredible nurse.  More importantly, you are already an incredible human being.  You immediately took my son under your wing, and made him feel a part of something.  Before we even left Sunday, you brought him out of his shell with your words, ways, and deeds.  He wasn’t observing from the sidelines, he was right in there.  He rarely gets “right in there,” and I attribute that to your all-around good guy-ness.  He felt he could trust you on sight, and he was so right about that.  Thank you.  Really, thank you.  To my niece Lauren, who decided to become a counselor last year after my son’s diagnosis:  I love you. And even though my giant weirdo seventh-grader would do anything to avoid having his picture taken with you, he loves you too.  You have done a good thing, and that good will be returned to you.  I know this.

I say this all the time because it’s true:  I never adequately convey my gratitude with words.  Words are insufficient to express what’s coursing through my veins.  The depth of my thanks, the way my heart is skipping right now as I try to say what I mean to say?  Indescribable.  I want to get it right.  I won’t.  Words like so, very, incredibly, really, extremely are mere filler adverbs.  I’m much better in song, but since I’m neither a singer nor songwriter, and my band has yet to write a song about this, my thank you song remains unsung.

We received no return mail from our happy camper last week, and honestly I was expecting none, so we’re even. The MDA posted camp pictures throughout the week to assuage the fears of us mommies, and that had to be enough.  It was.

There were hundreds more photos, but I don’t have each camper’s parents’ permission to share.  I love this shot though.  Look at all that happy!

I missed my kid, but believed he was where he was meant to be, that he needed me less than I needed him around.  It’s the way it’s supposed to be, I understand, and I think his week was perfection.

 

Friday morning was pick-up.  The email cautioned families not to arrive before the assigned time, so good little soldier I am, I timed my arrival for exactly five minutes early.  Just a touch of OCD on the timeliness thing, folks.  I and another parent were dead last to arrive, because everyone else was waaaaaay early and has no regard for rules obviously! (insert smiley emoticon here) and we approached a camp employee to inquire where we were to pick up.  She kindly led the way, and this father and I walked in silence, him about 15 feet in front of me, toward the meeting hall.  It occurred to me in that moment that he doesn’t want to have to know me either, so there was a dearth of chit-chat.  It’s OK, sir, I get it.

I spy Lauren upon entry, give her a big hug and ask after my son’s whereabouts.  I find him soon enough, and you’re thinking he’s all happy to see me, bursting with hugs for his mom, right?  Nah.  He sees me, grunts in my general direction and says, “I’m finishing up a story with Garrett, Mom.  Hold on.”  Clearly devastated by his separation from me (mm-hmm), I take it for what it is:  my giant, weird seventh-grader being a giant, weird seventh-grader.  His counselor made him save me a seat next to him for the presentation (see, Dillan is a prince among college men), and that was enough for me.  I get it.

Dillan told me that he wanted to be my son’s counselor again next year, but didn’t think he would get to be because my son was so easy.  You know how in cartoons when Scooby Doo gets his bell rung, shakes his Great Dane head and does that “oy yoy yoy” sound?  Me.  Cognitive dissonance.  Easy?  By way of comparison, I suppose my kid is medically easy.  Got it.  As soon as the photo video montage began, the tears began a-flowing.  My son said, “Oh, this happened last night when they showed pictures.”  Like tears just happen, as if they were a sneeze, something physical and not an emotional reaction. We both blubbered through the whole thing, and my heart (and eyes and nose–it was not pretty, y’all) overflowed.  I brought along just one tissue FOR ME thinking my eyes might leak a bit, but was unprepared for his outpouring.  My sweet boy revealed a lot then and there.  And me without my waterproof eyeliner. Sheesh.

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Intermission.  You probably need one.  Let’s all go to the lobby and get ourselves a treat because this is one long-ass piece of prose.

 

Checkout begins in earnest after the photo movie, and after thanks were showered upon the counselors and medical staff.  My kid’s cabin’s nurse has volunteered 26 years so far.  26 years, you guys!   He said the place kinda gets under your skin, and I can see that it would.  These kids!   Camp graduates got to say a good-bye on mic, and you know I wished I had more tissue. Camp was their place, their comfort, their I’m not the only one.   I cry my way over to the camp director, and all I can do before losing my shit completely is mutter “Thank you.”  I’m crying days later here as I rerun the scene.

I get our car queued up, my son’s had help getting his gear packed (except for the lotion, shampoo and swim trunks he neglected), so all that is left is to say good-bye.  Dillan hugged my kid hard, told him how much he enjoyed being around him, and told my kid he loved him while my weird, giant seventh-grader held on for dear life.  I think his counselor had to prop him up, no small feat there, because all my kid could do is hold on, nod his shaggy head in agreement and sob.  I’ll never forget that moment.  I’ll never forget that my oft-detached child found home right there, right then.

“Why are good-byes so hard?”  That’s a question for the ages, kid.

The homecoming was anti-climactic, and I figured that would be the way it was too.  No worries there.  The worries reared their ugly heads when we, scant hours after his return, repacked the car for his little brother’s weekend-long baseball tournament.

“I just want to stay at home in my own bed.  Why do I have to go?  Why can’t I just still be at camp with my friends?”

Hours later, sitting poolside, unable to do anything but cry–

“I want to go back to camp.  I want to be with my friends.  I just want to be with those guys.  I finally felt like I fit in, that I wasn’t the odd one out.  I found friends where I belong no matter what. I just want to be alone.  Or I just want to be back at camp.  Or home even.  I just want to go back to our room and look at pictures.  Can I just do that?”

Yes.  You certainly may.

And that’s when I wanted to die.  He knows.  He’s known longer than we have.  The only way I was able to make him smile was to drop the f-bomb.  Stay hot, mom.  It’s impossible to answer rhetorical questions such as his.  There’s no logic.  Why does he have MD?  Why does anyone?  I don’t fucking know.  It’s a perfectly legitimate question, but it’s nowhere near fair. So I said this:  “You had this amazing week at camp because you have MD.  I fucking HATE that you have MD (finally earned a grin from the tall one), but I’m thrilled you got this camp experience because of it.”  He finally understood what the Muscle Walk was about.  I told him that friends and family donated all that money because of HIM, and if not because of him because of me, so actually yes, because of him.  I told him someone I may never know gave our team $1,000 because of him, that I’d never felt more loved, but I’d also never felt less well-equipped to be the mom.

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Find your tribe.  I wish I’d written this.

I promised him that the passage of even one more day would lessen the ache his heart felt, and he let me keep my promise.  He’s called his counselor only once to check in so far, and has been messaging here and there with one of his cabin mates.  He found his tribe, those boys of Willow, and I get how finding your tribe is life-changing.  He’s already plotting and planning for next year, and that acute pain he felt Friday and Saturday seems to be on the wane.  Mine?  Well, that’s another blog post entirely.

 

 

 

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14 thoughts on “Finding His Tribe

  1. I am glad he had the experience of camp and of fitting in. The difficulty of being un-able in a world where the assumption is that everyone is healthy and able is something that all “disabled” people face every day of our lives. I hate it that children need to find a way to cope with society’s disregard of those who have special needs. It is great that he has you as his mom. Also, it seems as if he has made some friends that will ease his journey.

    Liked by 2 people

    • Thank you, Rose. He had a blast, and he’s not outwardly a real emotive child, so for him to go on about how much he liked it says a lot! I’m not sure he’d agree with you that it’s great he has me for his mom–every middle schooler is horrified with admitting he has parents at all, but I will keep trying. I’ve always said that the world is not kind to outliers, but I never knew just how well the outliers understood that too. That was a big takeaway for me. Thank you so much for reading and providing such insightful feedback.

      Liked by 1 person

  2. Oh, Wendy. I cried as I read this post, but not until after intermission. I was doing pretty well until “Hours later, sitting poolside…” All any teen wants is to fit in. It’s what we all want. I’m happy to hear that your big kid has found his tribe. Thank you for giving your son a voice as he navigates life with MD and thank you for opening yourself up. I have no doubt that your words make a real difference to many people. Stay strong momma! P.S. As someone who knows you IRL, I double pinky swear, not a word.

    Liked by 1 person

    • “Not until after intermission.” Awesome, Sue. I can’t tell you how much it means that you’re here for me. I so look forward to your comments–they make me feel connected to you from halfway across the country. You’re so darn smart, lady!

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  3. We are driving home from Mini Me’s college orientation at Belmont in Nashville. I’m sitting in the way back seat of our mini van, alone (loving it😂), catching up on my reading…and now I am crying…. (again–orientation was not easy😂) Watching children grow up without any medical issues is difficult enough. I can’t imagine the twisting and turning that goes on inside you on a daily basis-not to mention the damage it does to your heart.💔 I have often said that if I had known how much being a mother would hurt (and I’m in no way referring to birth pains!) I would have thought about it a little more seriously…..And I am in NO way sorry that I did it!! It just hurts so badly to watch my children get their feelings hurt, or fail at something, or be wronged by “the system”……I would give up my own life for any of them, at any time-no questions asked-no hesitation. Sometimes I just feel like my heart is naked and exposed….😂 Sorry for the rambling! I love reading your work. You are a great writer–but more than that–a most excellent MOM❤️❤️❤️

    Liked by 1 person

    • You are the best! I recently said to a friend that crying here is MY job, and I’m really good at it! I’m not glad you cried, but am touched that you reacted emotionally. You are so right about laying down your own life for your kids–it’s what you do when you’re a mom, and there’d be no question or hesitation. This parenting gig is not for the weak, but I think you’re killing it! College, Carnegie Hall?? Been a pretty good ride for you in recent weeks. xoxo

      Liked by 1 person

      • Thank you❤️ Funny, isn’t it, that we never think of ourselves as killing it?! I almost always feel as though I’m being judged by someone somewhere for every parenting decision I make😝 But the world truly does not revolve around me-I’m really not that important and I have to remind myself of that from time to time. Mostly I think it’s just me judging myself because I’m just winging it-like everybody else😂 And yes, the recent weeks have been good….let’s see how I’m doing come August 20😂😂😂😂

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  4. Wendy

    Lori just told me about your blog. I read it all at one time – I laughed and cried, ranted about the unfairness of bad things happening to good people and rejoiced with you and your family at the very large support system you have. Please add me to your list of people who want to help and to be there for you – in whatever form that might take

    Love and prayers,

    Patti

    I loved the picture with you and your fabulous hair. What I remember is never knowing what color your hair would be on Monday mornings –

    Liked by 1 person

    • Aww, thanks Patti. One thing I’ve been reminded of since his diagnosis is that I do have a terrific network around me. People reveal their best selves to those on our side of the equation–it’s a weird realization. I’ve always been grateful for my friends and family, but that’s been intensified over the last year. You made me laugh out loud with your Monday hair comment. Those were the good old days!!! Ah, youth. . . 😁 Thank you for reading–it’s not always the most uplifting place to be here, and I appreciate you hanging in!

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  5. While I may have been denied pictures and had to fight for that motorcycle ride together, I’m so so so happy that I got to experience camp because of him and get to see him loving it!!! I love you and that boy so much. I kept telling people that he was my cousin but basically my brother. All the tears. ❤

    Liked by 1 person

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