The Power of Kindness Part 2

“I can’t thank you enough.” That phrase is thrown around a lot, but how many people actually mean it? How many people are lucky enough to know someone whom they feel they truly can’t thank enough? I would imagine not many. But, my family and I are lucky enough to know someone who makes us feel like that – New York Rangers reporter, John Giannone. My husband thinks my “mushy-gushy” (his words) essays are a bit over the top and may even make John, a really humble guy who truly feels he hasn’t done anything special (read The Power of Kindness, and you’ll know he has), feel a little uncomfortable with my profuse thank-yous.

While I would never in a million years want that to happen (and thankfully, it turns out nothing could be further from the truth), I can’t help but find myself pondering this: How can you possibly thank someone who has lightened the burden of your child’s struggles – even in his darkest moments? And, I also can’t help but try to do just that with the only tool I possess – my words. Although, I suspect even the most eloquent of words couldn’t quite convey the depths of my gratitude. If you’re wondering why I’m so grateful to John and feel compelled to thank him again – just watch this video: John Giannone ALS Ice Bucket Challenge (On a side note, my kids say thank you in their own way, including my almost fifth-grader writing “John Giannone is awesome” in whatever medium he can – see sand above and clay below.)

This is the third version of this essay (according to WordPress, it’s had 25+ revisions, but that doesn’t count all the revisions I made on my phone – emailing myself changes). I’m trying to avoid over-the-top, maudlin sentiments and convey my gratitude simply. But, I’m not only writing this to say thank you, I’m also writing it because too often we only hear about people with nefarious motives. We only hear about those who would throw someone under a bus (figuratively and quite possibly literally), if it would help them reach their goals. It’s refreshing, touching and inspiring to read about someone doing something just to benefit another. I learned this when I posted The Power of Kindness. People I’d never met before told me that it made them cry. Over and over I heard that it gave my readers hope and made them feel less alone. You can’t ask for more than that as a writer.

If you’ve read The Power of Kindness, then you know the remarkable effect John has had on my son, J. Actually, I can share my son’s full name now – Joshua. It’s on the video above (which I wouldn’t trade for all the anonymity in the world) and, more importantly, I don’t need to protect his identity anymore – like I did when I first started writing about his battle with obsessive compulsive disorder in Twice Exceptional, an essay posted on my old blog in April 2010. Then he was a scared nine year old – now he’s a thirteen and a half year old who will tell everyone and anyone that he fights OCD tooth and nail every day.

Last spring John accomplished what five years of therapy hasn’t – he got Joshua eating again after years of suffering from an eating disorder and looking absolutely skeletal. (You can read Hungry for details on that and why it felt like the worst possible punishment, since I had very similar eating issues in my early twenties.) But, after he met John (whom I had become friends with on Twitter a couple of years ago) at the New York Rangers’ Hockey House fan festival he started eating. That very night he ate a whole slice of pizza, something he hadn’t done in ages. Every time John emailed Joshua, he made leaps and bounds. And, John was able to get him to break past his fear and go on a summer camp trip to a water park. (Read No Joke for the rest of this heartwarming story.) But, things spiraled quickly for Joshua this summer. He had a lot of anxiety surrounding camp, mostly because of the trips his group took. They went to Hershey Park for two days and Joshua bowed out of that trip, but even the day trips left him anxious.

I didn’t want to reach out to John every time Joshua had a setback, because it was becoming a regular occurrence and I didn’t want John’s relationship with Joshua to become a burden. Plus, it’s summer – John’s time with his family and I felt that asking him to email Joshua would be an intrusion. So I refrained from sharing when things got even worse – we found out on August 6th that Joshua needs a second surgery to correct a problem that we thought was solved with a surgery two years ago. Thankfully, it’s not life-threatening, but it absolutely needs to be done. So, we have no choice and Joshua was, understandably, shaken by learning that he needs to go through this painful surgery again – with another week of school missed and another one to two months spent sitting on the sideline during gym and intramural sports.

I was shaken too. It seemed a couple of weeks ago as if everything was falling apart. Joshua lost almost all of the weight he had gained in the spring. And he grew almost two inches since then, so he seemed even more skin and bones – a good thirty pounds underweight and then some. I was having my own health issues – a mysterious allergy that left me with my arms and legs bright red and hot to the touch and even made my mouth swell and a few hives pop up after eating a burger with zucchini and tomato on a sesame seed bun (I rarely eat anything with sesame seeds, because I don’t like them). Yet, no doctor has been able to figure it out (though, they’ve narrowed it down to sesame seeds, aloe, polypropylene glycol, sulfates, benzoates and a few other unpronounceable chemicals) and the allergist advised me to carry an epi-pen. But, all that didn’t even matter to me – if Joshua was happy, I would have been too. I also had other things weighing on my mind – but, this isn’t about me and I don’t like to have a pity party for myself, so I’m not going into it here.

I will say that every so often during this difficult summer I’ve made a mental checklist of all of the things worrying me in order of importance and every single time Joshua’s struggles came out on top. And every single time I’ve decided that that’s the only thing that matters. Watching him so racked by anxiety and wasting away was painful and blotted out any other problems (even though it likely made any health issues I had worse – without my even realizing it).

Because I was so wrapped up in worrying about Joshua’s mental state, Robin William’s death hit me – as it had so many others – hard. Not just because he seemed like a genuinely lovely person and I loved him as a performer (especially having grown up on Mork and Mindy), but also because it really drove home the fact that mental illness is quite often an insurmountable challenge, no matter how much money you have, no matter if you’re famous and are showered with the adoration of millions. Those things don’t matter when there is a darkness that envelopes you, when everything seems hopeless and it seems like the world would be better off without you, even though nothing could be further from the truth. As the parent of a child with mental illness (and having faced my own twin demons of anxiety and disordered eating two decades ago), I found this terrifying and unspeakably sad. I’ll admit that I cried over it – over everything – sneaking into my basement to sit in my big, cushy rocker, so no one would notice. And, no one did notice when I came back up five minutes later – my eyes red-rimmed. The mom can’t fall apart, even if I felt like I was inside.

It was not long after this nadir that I got a tweet from John saying that he was challenging my “awesome son Josh” to do the ALS bucket challenge that’s been sweeping social media in recent weeks. I couldn’t hear the audio on the video when I first listened to it, sitting in the parking lot at Kohls, but just the fact that he challenged Joshua made him (and me) so happy. That night when I kissed Joshua good night he whispered, “I feel so special.” It was the first night he fell asleep with ease in weeks, maybe even since the beginning of the summer.

That would have been enough to make things better. Joshua actually ate a whole slice of pizza again that night and a garlic knot – something he hadn’t done in weeks either. But, two days later – our first night in Hampton Bays on vacation – we were at a restaurant with excruciatingly slow service. To pass the time I brought up John’s video and handed the phone to Joshua, telling him to play it and see if he could hear the audio. I watched him – head tilted, phone to his ear – as his countenance transformed. He broke into a huge smile and his face lit up. He was shaking as he handed the phone back to me.

“Did he mention you?” I asked.

“Oh my god! He said I’m the best Rangers fan he’s ever known!” was his incredibly excited response. I was floored, as well and had to watch it. Well, watching that video and knowing how Joshua struggles every day and knowing how hopeless things have seemed at times lately, I just started to cry – right in the middle of the little restaurant. People glanced at me. I probably embarrassed my kids. But, I didn’t care one bit. This was one of the nicest things that anyone has ever done for me and my family. And most importantly, it caused a seismic change in Joshua – he started eating again. He started smiling again. He gained back the weight he lost. He even grew an inch – a whole inch – since he was measured two and a half weeks earlier at the surgery consult. I know that seems crazy, but at his height and weight check the doctor said he’s hitting a growth spurt.

The best part – this video is better than any psychotropic drug out there. It is the ultimate panacea. Every time Joshua gets anxious, I tell him – “Remember, you’re ‘the best Rangers fan’ John has ever known!” and we watch the video for the millionth time. A huge smile crosses his face. His heart rate slows down and the knots in his stomach ease up. So, that’s why I’m immeasurably thankful and not sure if I’ll never be able to adequately convey that.

My 80 year old mother (who doesn’t dole out praise indiscriminately) summed it up nicely after watching the video. She said, “There are very few human beings like that in this world. He should be greatly rewarded in his life.” I couldn’t agree more.

To learn more about the ALS Ice Bucket Challenge (say, if you’ve been without internet for most of August) and/or to donate, please click here: FIGHT ALS WITH THE #ICEBUCKETCHALLENGE The Ice Bucket Challenge has raised $88.5 million as of today – a pretty wonderful feel good story itself…

photo (11)




7 thoughts on “The Power of Kindness Part 2

  1. Teena P. says:

    Due to my travel time Stephanie, sorry it has taken me so long to respond. I have been following all the great strides your son has been making and all the incredible stories that involve our own John Gianonne. You’re right, unfortunately we all don’t get a chance to meet someone who can touch our lives so much like John has for your son and for your entire family. Cherish these times and hold on to those memories as you know your son will and John will too. You probably don’t have to say another thank you to John as every time he’s in touch with your son he will see it. 🙂 The #IceBucketChallenge was just amazing!!! Thanks so much for sharing your stories. It’s so nice to hear something good happen with all that’s going on in this world. There are actually people who care.

    Teena P.

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