When a Mom Noticed How My Grandson Was Being Treated at a Birthday Party


My grandson is on the autism spectrum.

He has challenges, but we are trying — he is trying — to find our way through.

He couldn’t stand the sound of water running and a toilet flushing since birth. He couldn’t stand the sound of a vacuum, hair dryer, any fans or too many voices. He couldn’t stand on the grass without freezing or enjoy the feeling of sand on his feet or hands, but we had to try to help him.

He had been using his “heavenphones” (headphones) at home when we vacuumed, ran a bath, flushed the toilet, etc. So, I got permission to have him bring them to school. It was awesome.

He could could interact with the other kids, he could listen to the teacher and this, with his breathing exercises (three deep breaths in though the mouth and out through the nose), appeared to make a huge difference. Wearing his “heavenphones” was entirely up to him. He would take them off and put them on as he felt he needed them. Keep in mind at this point he was barely 4 years old.

We noticed he still had the hardest time just after snack. He is allergic to peanuts and had “safety snacks” at school. If the snack had any chance of having peanuts, he would eat the snack from home instead. I had noticed at home he had trouble after having sugar. All kids get a little amped, right? So, we decided to drastically reduce the amount of sugar in his diet. It was like night and day. His teacher had mentioned her son had trouble with red dyes, so we took those out as well and he did great! So, from that time on, he brought his snacks to school.

But it made him “different.” I have many pictures of him at preschool where everyone else had juice boxes, cookies or cake and he had Goldfish and water. No one invited the kid who couldn’t eat cake to a their birthday party.

Between his second year of preschool and Kindergarten, he was invited to a birthday party for a little boy whose mom was a teacher at the school and knew him. It was at this party that something happened that blew us away.

My daughter had contacted the mom of the little boy and accepted the invitation. She told her she would send him with bottled water and sugar-free cookies so he would share in the snack time, and she brought enough for him to share. At this point, he was only wearing his “heavenphones” for maybe 25 percent of his time in school and many days, he didn’t wear them at all.

The party was at a place called “My Gym.” My daughter brought the snacks and his “heavenphones” with them, and off he went to play. About 10 minutes later, he came and got his “heavenphones” and a drink of water and returned to playing. My daughter could see she was getting some looks from the other parents. There had been soda provided for the kids but he was drinking water. And wearing headphones.

He played for about another 15 minutes, came back and got another drink of water and took off his “heavenphones.” It was at this point one of the moms decided to confront my daughter.

It started with one mom and turned into a group discussion. My daughter explained he had problems with noises and wasn’t able to “deal” with sugar. She explained that he disliked the feeling of being out of control and the way sugar affected him. He, at 4 years old, would ask you when you gave him something how many grams of sugar it contained. He had decided that 3 grams was his limit. He decided, not us.

It was decided by the “mom mob” that my daughter was being mean by not allowing him to share in the birthday cake, candy and pop. It was decided that she was making him odd, making him stand out, embarrassing him. They decided that she should let him eat sugar on special occasions such as this.

When it was time for cake and presents, the birthday boy’s mom skipped the cake for him, and he had his water and cookies. He even shared with the other kids. One of the “mom mob” walked over and gave him a can of pop. Before my daughter could say a word, my grandson gave it back to her and said, “No thank you.”

She tried to give it to him again and again, but he refused. As everyone was leaving the party, gift bags were given out at the door. One of the moms gave him the gift bag and he looked inside and gave it back to her. He told her, “No thank you, that is too much sugar for me,” and proceeded to leave.

The mom stood in the door and insisted he take it. My daughter was about to come unglued when he quietly took the bag, handed it to her and said “Here mommy, you know what to do with this.” And they left.

The mother of the birthday boy was totally unaware of all of this, but, another mom, who also knew my grandson, was aware. Several months later, he was invited to that little boy’s birthday party, where water was supplied for him, the gift bags had no candy and the cake was sent home in dixie cups. She told my daughter she was sorry she hadn’t supported her at the previous birthday party, but my daughter and grandson had both done such a good job, she had just let it go. She knew he would be invited to her son’s birthday and it wouldn’t be repeated. None of the children whose parents had been rude to them were invited.

My grandson is in kindergarten now. He is 6 years old. I found his “heavenphones” the other day under a bunch of toys. He doesn’t use them anymore. He loves the feeling of fans on his face, he rolls in the grass. He loves the beach and digging in the sand. He still does his breathing, and his kindergarten teacher has a “secret signal” to remind him when he needs to. We, and it is a group effort, have goals we are working on.

He brings home a colored slip of paper with a bear or bunny that says, “Great Day Today!” and we hang it on the wall for everyone to see. I love to see his face when he gets off the bus and knows he has one to hang. If he doesn’t, we discuss why it happened and what he can do to have a better day tomorrow.

Boy holding "Great job today!" sign in a classroom

He still doesn’t eat much sugar but he now accepts the cupcake or cookie and brings it home to split with his little sister (half the sugar, Nana!). If he starts to feel edgy or jittery, he goes and gets some string cheese or something with protein to counteract it.

He may always have challenges, but that’s not the end of the world.

He is a wonderful, energetic, beautiful little boy who has found Legos. He can sit for hours and create new things. He can follow step by step to make things that are thousands of pieces. He reads and does math on a second grade level and frankly, there is nothing wrong with him. He is my grandson, and I wouldn’t want him to be anyone else. He just came home from school and guess what? Yup, he got a purple bunny today!

Nice job.

Editor’s note: This post has been updated since publication to meet our editorial guidelines.




To the Uncommonly Kind Strangers Who Helped Me Become an Autism Advocate


I was diagnosed with autism as a college senior. Until that point, I knew the world and I were often incompatible, but I had little insight about myself. I had a lot of frustration and no understanding as to why so many things ended in a fallout.

When I met Leigh during band camp, she recognized a girl who needed a friend. She also immediately saw that I didn’t seem to fit in. I was extremely sensitive to sounds and other things going on around me, and I just didn’t quite mesh in groups. A few weeks into our friendship, she mentioned autism, and as an education major (with a stereotypical autistic memory!), I was familiar with the diagnostic criteria. Yet, I wasn’t familiar enough with myself to see those traits in me. A few months later, I was evaluated and diagnosed.

There are seemingly endless reasons why my family and I wish I’d been diagnosed much earlier. The one positive thing about my late diagnosis was that Leigh was the one to pick up on it and start me off on the right foot — or, well, ideology. Right away, as a psychology major who had no background in autism, Leigh was absolutely sure there was nothing wrong with me, that I had a right to live and interact and enjoy things in my own way. She believed the solution to my mismatch with society was not to force my square-peg self into round holes. Instead, she helped me make a square hole drill (she did most of the work), and we set out to start making a place for me.

Now that I look back, it blows my mind that she got to that place completely on her own, and it wasn’t so much “getting there” as it was intuition for her. The story thus far is in itself a story about a stranger who did something kind. You know, um, changing the course of my entire life, bringing me directly to my passion and purpose in this world and sticking by a super-quirky girl who, at that time, did a lot of melting and shutting down and then spending the night on her love seat in the dorm room. I was lonely in my single room. It had never been a choice; I didn’t have a friend to room with at the time.


But that’s not the story I set out to tell (though it’s a story worth shouting from the rooftops, don’t you think?).  Leigh and I set out with the square-hole drill, and it wasn’t long before we realized every person deserves to fit in to the world around us. No more yours than mine nor his than hers. We did an autism awareness campaign on our small campus. We hand-made ribbons, hot glued them to pins and attached them to sheets of paper with a message about autism. We made about a thousand, which was nearly half our student body, and we stuck them into random mailboxes.

In June of 2009, six months post-diagnosis, I started a blog at Autistic Speaks, which is still active. I was gaining a foothold in advocacy efforts until my health took a severe downturn in January of 2012. I had no idea what was ahead of me. At this point, I have a diagnosis of mitochondrial disease; I have a feeding tube, central line in my chest that goes to my heart, an ostomy since my colon was removed and an insulin pump. I spent 15 months in a nursing home, and though I’m on my own again, I never know what a day will bring. I might sleep for 24 hours, or I might wake up with a migraine that hangs around for six weeks, or I might suddenly be septic and have to call 911. All real-life examples.

As things got harder with my health, I completely pulled back from advocacy. That was the wrong thing to do.  It made my world too small. It made it all about me, and my focus became my pain. I still do focus on the medical stuff, but it’s been a lifelong special interest, for Pete’s sake, and understanding what my body is doing (as best as medical science can possibly understand my body) calms my fears. That’s one of those square holes — it works for me, and that’s all that matters.

A long-time reader of my blog, Chloe Rothschild, reached out to me in the summer of 2012.  She had an awful experience at the hands of people she should have been able to trust, people who said they understood autism. She emailed me a few weeks after that, which was incredibly brave. She was scared, but even then, she knew the way to get un-scared was to take that experience and make something good of it. She wanted to advocate so other people never have to be so misunderstood. Chloe worked hard, as she still does today, and by the summer of 2013, she had the chance to speak at a national conference which happened to be in my city. Still in mopey mode, I dragged myself down there, only because I absolutely had to meet one of my best friends for the first time. Maybe it was all a sneaky ploy, but in the one day I spent there, I got hooked on the idea of speaking like that. But mostly, I saw the community of advocates and the friendship within their group as well as the power they had to change things on a large scale.

I have my feet firmly planted in the advocacy world again, writing, speaking and even working at an autism nonprofit in the community which has become my second family. I’m so proud of the work I do there, designing the website and emails, but most of all I love to talk with the families, helping the parents see how incredible their kids are and making sure they kids don’t forget it. I absolutely love conferences, big ones like the one where Chloe and I met, but my declining health means that airplanes are out of the question, as are long car rides. The one event that is reasonable for me to attend, OCALICON, takes place each November in Columbus, Ohio. It’s a chance to speak at the highest level, a chance to make professional connections and a chance to reunite with my community of autistic advocates.

It turns out that living in a nursing home and receiving all of $28 a month makes it hard to afford even a four-day trip just three hours away. In the spring, I added up the costs and realized it would never happen. I realized I would need help if it were going to happen. I went back and forth dozens of times on taking the advice of friends and setting up a fundraiser. Conferences are not exactly necessary to sustain life, and I’m always mindful of people in much more critical situations. I ultimately set it up, thinking that family and close friends may donate a few dollars here and there. Every bit would help.

I got a few donations of that sort fairly quickly and felt such gratitude, excitedly thanking the donors. As I wrote to them, I realized that even though I was in a nursing home, I did a lot of work every single day. Not a day went by that I wasn’t writing, studying and researching (I did the first year of my Master’s from the nursing home, which I’ve now completed). I had a hospital bed and a tray table and a laptop, my key to the world. I could have watched movies or played video games, but I worked incessantly, after surgeries and ER trips, and I worked on my thesis from the critical care unit. It might be a little backwards in terms of economics, but I did all of that without compensation, so I reasoned to myself that this fundraiser was the return on all the good I’d been doing without pay for the last year.

As the first night of my fundraiser closed, I was thrilled to have some coins rattling in the pot. I had six months until the conference, and any little bit helped. I woke up the next morning to an email that I’d had a donation during the night. I went over to the site…

The fundraiser was complete. A complete stranger had plopped several hundred dollars into my lap.

After verifying that it was real and trying to figure out what on earth had just happened — well, it turned out that autistic community is what happened. Somehow, and I don’t know how, a gentleman who lived many states away came across my fundraiser. I wrote to him, and it turned out he is on the spectrum. He said he’d been in my place some years ago and was grateful when someone helped him, so he wanted to do the same. “Go and do good things,” he said. It was almost like it was the only thing that made sense to him, that to walk away from a need he could fill without doing so was inherently senseless, which, oddly, made me stop and think that his uncommon response makes a lot more sense to me than the the usual human reaction of “someone else will take care of that need.” We’re still connected, and I was thrilled to be able to tell him about the event afterward. I got to speak on a panel, and I also had the privilege of speaking as part of a panel of some of the mentors and friends I respect most, including Chloe, on the main stage, under the lights. He was glad to hear and shared my post with his wife and kids, but there was no self-congratulatory fanfare at all, it was like he’d handed me a dollar for a water bottle. There was no sense of filled obligation. He was glad something he had to do had at least done something good. It’s simple, not in a way that makes it unimportant, but in a way that suggests it’s something that should happen far more than it does.

main stage 5

Of course I hope someday I can pay it forward, but money isn’t likely to be a thing I have in much quantity. But that one good deed, granted, one huge, incredibly selfless and kind good deed, follows me every day. I look for opportunities to do good, whether with my writing, my time or situations in which the $5 in my pocket does more good for someone else than it would for me. When a kid picks out a cookie and Dad realizes he only has a credit card, which the bakery doesn’t take, I’m confident in saying that my dollars are better spent there than on a donut for me. It’s not that I was a curmudgeon before, but being the recipient of an uncommonly kind action gives me the confidence to be kind in ways that others might find a little oddly generous.

But I’m a square peg. I’ll always be a square peg. I’m immensely proud to be part of a community of square pegs who do things like Leigh did when she reached out to a lonely me and helped me find my crowd, like Chloe did when she took a chance and became a best friend, like the mentors who spend their lives making things better for the next generation, and like the stranger who made it possible for me to keep advocating (and to take the one chance each year I have to be together with my autistic friends). I’ve found my people, and when I’m with them, I can leave my special square-hole drill at home.

I still take it everywhere I go, though, just in case I find a chance to be uncommonly kind. If I’m going to be weird, and I don’t have much control over that, this is precisely the kind of weird I want to be.

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I'm Not a Perfect Parent. He's Not a Perfect Kid.


I’m not a perfect parent.

Sometimes I’m tired. Sometimes I’m hurt. Sometimes I’m so mentally exhausted I can’t think straight. Sometimes I’m stressed beyond belief. Sometimes I don’t do things right for my son, Kreed, or I yell too much or don’t take the time to understand.

I’m not a perfect parent.

The trick is knowing that no one is. We try, and we do our best for Kreed, but sometimes our best is not super awesome. Sometimes our best is sheer exhaustion.

Kreed sometimes has days where he rages all day. Or pees in every part of the house. Or spills food everywhere. Or yells at me all day. Or hits me. He’s not a perfect kid, either. But we love him unconditionally — to the moon and back. Turns out Kreed also loves us unconditionally and forgives us when we have just as shitty days. These dimples sure help.

boy with sunglasses on

We’d like to think we can be there 100 percent for our kids every second of every day. Sometimes we’re just tired parents. Who wouldn’t be after waking up every two hours at night to put their child back to bed? Who wouldn’t be after cleaning up another mess left for us while we shut our eyes for just. a. second.

That’s they way it goes. Like I said, our kids aren’t perfect either. Some days the world is too much, and it’s so much easier to hit and yell and not use a toilet. I get it, I do. Some days Kreed just wants Five Guys for every meal and doesn’t understand that’s not OK. He’s hungry, and he wants their fries, damn it. So we fight and yell and have it out. Then he apologies, I apologize and life goes on.

boy in batman shirt

Sometimes life feels like a repeat. Sometimes nothing changes, and it’s a struggle to get through. Other days are amazing. Some days are both. I’m not a perfect parent, and he’s not a perfect kid. So that’s how that goes.

But as long as we keep progress in mind — not perfection — I think we’ll be all right. Last year we were at the end of eight months of pure hell. He raged and hurt himself and me badly day after day. He was restrained constantly to keep him from destroying his body or the house or me.  I think I went to a part of myself and my brain that kept the full weight of those eight months far from my consciousness. Now I can barely recall it, and I guess don’t want to. It’s a year later, and there’s much to celebrate.

This is not always an easy life. Some days will be better than others. Sometimes the bad days stack up, and you hardly remember what a good day looks like. But it will come. It will be a smile, a nod, a moment of wonderful — something — and the world will be OK for that time — five seconds, five minutes, five hours. That’s what we hold on to.

And remember it’s OK. We’re not perfect. We try our hardest, and we love, love, love. And often that’s what saves us all.

Editor’s note: It is with a heavy heart we share the news that Kreed passed away on May 8, 2016. Our hearts are with his family, and we’re so grateful to help keep his memory alive on our site. He was truly one of the mighty.


Why I Think of Autism as a Visit to the Amazon


Dear Autism (oh, and epilepsy, too):

Here’s a letter I never envisioned myself writing.

I don’t think anyone who has a child with autism truly admitted to themselves during pregnancy (and what a glorious time that was… *eyeroll*) that we might one day be navigating our way through the sweaty, remote, achingly confusing jungle that is autism, when we’d actually planned on a trip to Maui.

Of course, the Amazon also has breathtaking sights, exotic creatures and the piercing sounds of nature one cannot always pinpoint, but it’s nonetheless creepily dense, a bit frightening (snakes that can swallow a human whole?) and you’re utterly without a roadmap.

Autism, the reality is, you’re a disorder that both can and cannot be disentangled from the person who carries your diagnosis. My 5-year-old little boy, Quinn, can be distinguished from you, autism. He exists before you and far beyond; he’s not the sum total of your medley of symptoms.

At the same time, you have such a profound role in shaping his preferences and aversions, his ability to speak and his capacity to do or not do so many things.

young boy wearing suit and tie

However, so do his genetic profile and his environments.Therefore, while you might want to claim responsibility for all his features and characteristics, sometimes he avoids foods because my husband hates them too or has curious habits that are similar to mine (A consultant once observed a behavior, and I interjected, “No, no, that weirdness he gets from me.”).

Quinn is also a 5-year-old boy who attends an inclusive daycare, has epilepsy, a loving family, is an only child, lives in a temperate climate, comes from a middle-class family, has relatively educated parents and the list goes on and on.

So, autism, while you take up a lot of space in our lives with your constant requirements for therapies, modifications and understanding, I refuse to allow you to claim our son as your derivative, as your offspring, as your mirror.

He’s so much more, and the more I (and others) can remember and reflect on that, the less of a chokehold you’ll have on me or on him.

young boy smiling outside

In closing, autism, I respect your role in our lives; I treat you with deference and understanding, and I certainly don’t hate you. But let’s also face it, while we have wide-eyed and courageously travelled this jungle, we have also not forgotten you’ve supplied us with a tent in the Amazon rather than a plush suite at the Maui Hilton.

Admittedly, I’m now accustomed to the tent, to mitigating the sweat and heat, the noises and the chaos, but I’m also more appreciative of its unique beauty, its moments of stillness and oxygen-rich life-giving perspective, and the fiercely devoted tribes who live here too.

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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How I’ve Learned to Move Past the Fear That Comes With Raising a Child With Autism


One thing I’ve noticed most about the special needs community is how overwhelmed we parents are by fear and anxiety. We worry about every aspect of every day, not because we want to, but because there’s so much going on in our lives that qualifies worrying.

We, of course, talk about the bigger things. We worry about will happen to our special needs children when we are gone. We worry about services and our children’s schooling. We’re terrified of the next regression that could be around the corner.

But I’ve also found myself engulfed by fear during my everyday life. I don’t speed, and I always use my turn signal because God forbid we get pulled over with my autistic son in the car. He would scream and be overcome with anxiety. The officer would most likely be clueless, and the situation would escalate to myself and my child being taken out of the vehicle and questioned or worse.

I fear every time we go into a store or to a new place that something will upset him. A child crying or the store testing its alarms that will push him over the edge and cause a panic attack or meltdown from which he cannot recover. Yes, that happened; he was traumatized for months and always associated Walmart with that terrible sound.

Every time we lose a service or get waitlisted for a therapy, I fear regression. I fear skills we’ve worked so hard to master could be lost. I fear without therapy he will be delayed in some areas much longer than he would if we were getting the right services. I fear every move for this reason.

I fear ever being in a car accident with him in the car. His brother once ran their power wheels into a tree while he was in it. He would not go anywhere near the power wheels for months after that. Once we ignorantly went through a carwash with him in the car. It took a week and a lot of therapy, a lot of tears and screaming to get him back into the car. Can you imagine if we were in a car accident? I fear he would never get back in a car without severe anxiety.

Every time I get into the car without my children, I worry I could be in an accident and die, and my children would all have it so hard, and my son with autism would fall apart and regress far into his own world. Every time my husband gets deployed or has to go overseas for work, I fear something could happen and my children would be without a father and a provider, and we would lose the health benefits that mean so much to my son.

Every time I hear a siren and my son is not with me, I panic and my heart jumps into my throat. Is it him? Did he get out of the school and get hit by a car? Should I even send him to school if I can’t be with him constantly to make sure he’s safe?

I constantly worry about the medicine, the foods, the chemicals to which I expose my children, especially him. I cried before we gave our youngest daughter her one-year vaccines, because even though our son’s autism had nothing to do with vaccines, there’s a culture of fear surrounding our special needs children.

I don’t know about you, but there are days when I want to stay in a bubble with my family. Days when I just feel paralyzed by the fear and anxiety. But if I let that fear overtake me, I cannot live and, even worse, my children cannot live and experience the world around them. Unless we move forward from the fear we will miss out on all of the amazing moments and experiences we have every day with our children.

Even though I worried about being able to adjust to having a third child with so much on our plates, we moved forward, and I am so thankful we did because she’s an absolute joy. All of our children have brought us so much happiness and I refuse to get so bogged down by fear that I don’t get to experience that happiness.

This post originally appeared on From the Bowels of Motherhood.


To the Stranger at the Carnival Who Understood My Son


In the summer of 2014, some friends invited us to visit a local carnival held on the grounds of one of our local schools. We were slightly hesitant as my son, Alex, who has autism, was a bit of a loose cannon at times. Would there be anything for him to do? Would there be long lines? Will he only get a few chances at a game and once his turns were up, would he be upset?

This particular friend is a fellow autism mom and one of the most helpful people you could ever meet. We knew we’d have help and an extra set of understanding eyes. So off we went.

About an hour into it, things were going pretty well. Our youngest son was having fun. Our friend’s son, although upset about something that only another autism parent would understand, was having fun too.

Alex had been in the bouncy house, went through the bouncy tunnel and went down the bouncy slide. Although there were long lines, it seemed like the idea of getting onto the slide was enough to keep him fairly calm and patient.

As we headed over to the prize tent — the kids had won tickets — I glanced over at my husband, Jeff, and said, “Where’s Alex?” He’d been right next to him a half a second before this. We were all scrambling, looking around us. He wasn’t there.

Panicked, I started running and left our youngest son with our friend’s mom. Jeff took off in another direction, and our friend headed back towards the parking lot thinking maybe Alex would go back to the car if he didn’t see us.

While I was running and screaming his name I was thinking, Why am I screaming? He doesn’t answer to his name. At times, he doesn’t even turn around if we call him at home, so why will that be different out at a crowded carnival? If someone else finds him, how will they communicate with him? He’s completely nonverbal.

This was a panic like I’d never ever experienced.

All of a sudden this man appeared in front of me. He was an older gentleman, looked like a grandpa. “What’s his name?” he asked. “What’s he wearing?” I told him his name is Alex and he was wearing a blue tank top. I added that he’s autistic and doesn’t talk.

“OK, my grandson has autism too so I understand,” he said. “We’re going to find him!”

I didn’t have time to tell him more, and he didn’t ask anything else. And just like that, this man disappeared.

It seemed like hours were passing, although it was only minutes. Finally, Jeff spotted Alex. He was in-between the bouncy house and bouncy slide, watching the kids jump. Jeff said he looked him right in the eye when he saw him, almost like he knew he was lost and was happy to see a familiar face.

A few minutes later, the man found us. Seeing that we now had Alex, he expressed his relief that we’d found him, and we thanked him for helping us. Again, he mentioned his grandson and that he understood how scared we must have been. Then he and his wife walked away.


Fast forward to January 2015. We were out hiking the snowy trails and came across a man and his dog. Of course, the boys stopped to pet his dog. He looked at us and said we looked familiar.

“I’ve met you somewhere before,” he said.

“Yeah? Well, we hike a lot!” Jeff said. “I’m sure we’ve seen you on the trails.”

The man was still looking at us like he knew us but just couldn’t place how he knew us.

“No, it was this summer! Yeah that’s it!” he said. “He [pointing at Alex] got lost at a fair, didn’t he? I was helping you look for him! Hi Alex!” As he leaned down and patted Alex on the back, he added, “My grandson is autistic, too, that was so scary!”

I couldn’t believe this man remembered us! But he was right! He was the one who’d helped us look for Alex when he got separated from us at the fair. Although he’d told us he was there with his grandson and wife, we had no way of knowing where he was from. Was he just here visiting? Did they come to the carnival from a neighboring town? For all we knew, he could have been from anywhere.

Not that we wanted to re-live those moments, but it was a joy to see this man and to thank him again for helping us on that frightening day.


This post originally appeared on Chicken Soup with a Side of Bacon.


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