The Jimmy Stewart Movie That Made Me Appreciate My Son’s Differences a Bit More

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Recently we had a free trial of one of the premium movie channels, and my husband decided to record “Harvey” figuring it would make a good movie for us to watch as a family. I was familiar with the story a little, but it wasn’t until we started watching it that I saw the parallels it had with our son, Griffin. It left an impression on me, one I wasn’t expecting.

Here’s a breakdown of the movie (Spoiler alert): Elwood is a grown man who has an imaginary friend named Harvey. Harvey is a pooka, a Celtic mythological creature that looks like a big bunny. Elwood walks with his arm around Harvey, introducing him to everyone he meets. Here’s where I start to think, Hey, this sounds familiar. Griffin had, well still has (although it’s quite deflated), a balloon he decorated and named Pooka. Although he named the balloon after a character from the video game “Dig Dug,” Pooka is not a name you hear every day or even every other day. Also, Griffin, like a lot of kids, had imaginary friends when he was younger. Well I should say he had imaginary siblings, whose names were Leo and Rusty. And then there’s Griffin’s name. Just like pookas, griffins are also mythological creatures.

Anyway, Elwood’s family doesn’t understand him and tries to get him to go into a sanatarium. They’re not sure what’s causing him to see Harvey. Could it be that he drinks too much? Or is it mental illness? Elwood is kind and harmless, inviting strangers to be his friend any chance he gets. Despite his gentle ways, his behavior embarrasses his sister, who feels she has to watch every move Elwood makes.

I’ve struggled with wanting to know what causes Griffin’s behaviors and how to help him, even after he was given the Asperger syndrome diagnosis. I hate to admit it, but in the beginning I thought there was something wrong with him. I would always be close by in case he said or did something someone might not understand (which frankly happened quite often). His behaviors embarrassed me because I believed they were a reflection of my parenting. All I wanted to do was help him, and it seemed like no matter what we did, nothing worked.  I know I also cared way too much what others thought. To be honest, even now I sometimes still do. I do know now there’s nothing wrong with Griffin. He just needs time, things explained in a way he understands, patience and acceptance. He’s a complex, fascinating person. He views the world differently than most, and it’s pretty extraordinary. I see Griffin connecting with others in his unique way, and I can’t help but fill with pride. He’ll be your friend, and you’ll be better off for knowing him.

Now back to our film…

In the end, Elwood is given the chance to receive a shot that will help him not see Harvey. He tells his sister, Veta, he’ll take it if that’s what she wants him to do.

While in the waiting room, the taxi cab driver, who will be taking them all home afterwords, arrives. He starts telling Veta about the patients he brings to the sanatarium. “I’ve been driving this route for 15 years. I’ve brought ’em out here to get that stuff, and I’ve drove ’em home after they had it. It changes them… On the way out here, they sit back and enjoy the ride. They talk to me. Sometimes we stop and watch the sunsets and look at the birds flyin’. Sometimes we stop and watch the birds when there ain’t no birds, and look at the sunsets when it’s raining. We have a swell time. And I always get a big tip. But afterwards, oh oh…  They crab, crab, crab. They yell at me: Watch the lights! Watch the brakes! Watch the intersections! They scream at me to hurry. They got no faith in me or my buggy. Yet, it’s the same cab, the same driver, and we’re going back over the very same road. It’s no fun. And no tips… After this he’ll be a perfectly normal human being. And you know what stinkers they are!”

After hearing the cab driver’s take on what happens to those who get the shot, Veta is filled with regret and rushes to stop the doctor from giving Elwood the shot. Veta realizes the beauty in who Elwood is, and she doesn’t want him to change. Elwood is accepted for who he is, and others start to live in his world. They even begin to see Harvey too.

This scene captures so much of the way I feel about Griffin. Every part of him is important. His differences make him the amazing, dynamic, complex, sensitive, observant, loving soul that he is. He gets so excited about things that many wouldn’t even notice. Yes, it can be hard as hell being his mom sometimes, but the rest of the time it’s absolutely magical. I would never give him a shot that would change him. I love that he’s so unique. I love living in his world. The tough times are tough, but I’ve learned that’s part of our journey.

In some of those tough moments I do wish there was a shot I could be given. One that could equip me with the ability to communicate and help Griffin. One that could help me help him understand and express his feelings in appropriate ways. One that could make me not care so much about what others think. Maybe I’ve already found the magic shot, the magic potion. Maybe it’s a combination of unconditional love, patience, never giving up, thinking outside the box, knowing that Griffin doesn’t need to be fixed — and faith!

If I changed any part of Griffin, he would be different, I would be different. He wouldn’t be who he is, and I wouldn’t be who I am. And thanks to Griffin, I can say I like who I am and who I’ve become since being his mom. I admit it can be hard being different. But I like that we’re not perfectly normal human beings, because… you know what stinkers they are!

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A 2-Year-Old in the Hospital Cafeteria Helped Me Realize Everything Would Be OK

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A week after we received a pre-natal diagnosis that our unborn son had Down syndrome, we were told he also had an AVSD heart defect that would require heart surgery when he was between 4 and 6 months old. I was devastated — I could handle the Down syndrome, but the heart defect scared me. Would he even make it to 36 weeks? Would he die before we had a chance to meet him? I was so concerned about his heart that the Down syndrome didn’t seem to matter. I counted the days like minutes and the hours like seconds. Declan finally had heart surgery when he was 5 months old, and that was the easy part. He struggled to recover his oxygen levels over the next few weeks, having to be reintubated and fed only by NG tube. He slowly improved, and it finally looked like we were headed home.

Then, just when we thought we might get discharged, Declan had other ideas. On Saturday, he was taking bottles, on minimal oxygen and his meds had been reduced to discharge levels. They’d even given us his discharge prescriptions to have filled.

Then, on Sunday at 5:45 a.m., my cellphone rang. I recognized the number and knew even before I answered that something was up. The attending physician on the other end of the line said my son had desaturated around 5 a.m., and they had put him back on “high flow” oxygen. The good news was they were looking into options before reintubating him. His lungs were “cloudy” again, so they restarted the drip line lasixs (diuretics). They were going to see how he responded before moving further. He seemed to do fine the rest of the day — his lungs were clearing, and they reduced his oxygen a little. I was still recovering from the food poisoning I had on Saturday, so after a nap at home, we headed back to the hospital to check on him. He was sleeping peacefully, and the nurse said he’d held his saturation levels all afternoon. So, we went home and went to bed.

Then, as if I was Bill Murray in “Groundhog Day,” my cellphone ran again the next morning — at 5:45 a.m. The same number, the same voice on the other end, the same situation. Our baby had desaturated on the high flow oxygen so they put him on the “scuba” mask. This is one step short of reintubation. If the scuba mask was not successful, that would be the next step.

The fact that he desaturated again meant the meds weren’t working, so something else was going on. His cardiologist and surgeon both came to visit that morning before rounds. They’d reviewed all the data and agreed it didn’t appear to be a pH problem. They speculated about various other causes, as did the team on rounds. What everyone admitted, more or less, was that they really didn’t know what the problem was. A group of six (or seven)-figure salaries standing around speculating was not boosting my confidence.

They decided to send him to the cardiac catheterization lab (the”cath lab”). Here, they would look at pressures in the heart and lungs in more detail than they could see in an echo or X-ray. Dex would need to be put under again, so reintubation was necessary. We hoped to have an answer by mid-afternoon.

Since we had three hours or so to kill and because I was at my wit’s end, my husband convinced me to go get something to eat downstairs. We decided to sit on the patio and get a little vitamin D, while eating and waiting for my parents to arrive. Then, the strangest thing happened.

As I watched the patio doors, anticipating my parents’ arrival, a woman and her two daughters walked out. As they came toward us, I couldn’t help but notice that the younger one had Down syndrome. Right as they walked by, I commented on how cute her daughter was, then asked her if she had Down syndrome. The mom, Brooke, looked at me and said yes. I told her we had a son with Down syndrome, and she asked if we were here for his surgery.

Then, as if Brooke and I had been friends for years, she went on to tell me their story. Her daughter, GiGi, is 2 years old now but had a full AV canal repair at 5 months, just like our son. GiGi also had all kinds of complications after surgery, including pneumonia, and spent 56 days in the cardiovascular ICU (CVICU). But unless you saw the scar on her chest, you would never know now. She was walking all over the patio, exploring and chasing her big sis around, like any other vivacious toddler. Easton, their 5-year-old daughter, was the ever patient big sister, just like our daughter, Teagan. Chris, their dad, appeared a few minutes later. He scooped GiGi up and tickled her. If my husband, Scott, hadn’t shaved his beard off last month, you’d think they were brothers. It was like we were looking at a mirror image of our little family. As Scott later said, it was like a little angel walked through those doors to let us know everything was going to be OK.

Our Dex returned from the cath lab around 2:30 p.m. They discovered he had mitral valve regurgitation; his left ventricle was “stiff” from being overworked prior to surgery. This caused the blood vessels in his lungs to flood with blood, hence the cloudiness in the X-rays. The course of action was to put him on medication to relax the ventricle and see if that would reduce the regurgitation. If so, we could eventually go home on the outpatient version of these meds. The worst case scenario would be another open-heart surgery to fix the valve. There’s no in-between solution — it’s all or nothing. The doctors decided to move much slower with the weening process and give him plenty of time to react, so we were looking at at least another 7-10 days in the CVICU.

As as we left that night to try and get some rest, we told our night nurse, Larry, that our goal for the night was “no surprises.” Larry, a 30-year veteran in the ICU, agreed, and said, “Slow and steady wins the race in the cardiac unit.”

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To the Anonymous Restaurant Patron Who Didn’t Look At Us With Pity

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My daughter, Annie, was born blind due to a congenital retinal disease called Leber’s Congenital Amaurosis (LCA).

She’s an adventurous, fun-loving kid who loves exploring new things outside. In early November 2014, we were in Boston for a special event for kids with vision impairments at the New England Aquarium (sponsored by the Massachusetts Association of Parents of the Visually Impaired).

After, I decided we should experience the city and walk the several blocks to the North End for lunch. We found a quiet, family-run, Italian restaurant (Pagliuca’s) and sat down for a great meal and wonderful service. When I asked for the bill, the waitress said “No bill, you’re all set.”

I protested, saying it was kind but unnecessary. A part of me was thinking, “We don’t need anyone’s pity! We are so far beyond that…”

She insisted. She said a regular, who would remain anonymous, had watched us walk into the restaurant — Annie with her cane — and he just wanted to do something nice for us.

I asked if I could buy the person a glass of wine or coffee as a thank you.

“No, he doesn’t drink either.”

As we approached the front door to leave, thanking almost everyone in sight, the same waitress came up and stuck something in my pocket and said, “He also wants you to buy something nice for her at Christmas.”

I thought to protest again but was overcome by the kindness. It was not pity at all — just someone who felt the need to do something nice at that moment. When we got outside, I found a $100 bill in my pocket.

This is a photo from the same day…

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We’ve pledged to pay it forward, in story and in-kind, so that my own kids and many others will know: there are good people out there. Choose to be one of them.

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To the Woman Who Saw Me Crying in Church and Said Something

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Recently, I was sitting in church, and the pastor was talking about the impact of losing a loved one.

Instantly, the tears began to fall. I was taken back to the previous spring of 2014 when my infant son, Dylan, unexpectedly passed away. The pain of that day cannot be measured or expressed adequately. His death left an enormous hole behind in my family’s life.

What started out as silent, small tears turned into gut-wrenching sobs. I tried to control them since I was in a public place, but the pain was too overwhelming, and even though I muffled them as best I could, I was embarrassed.

When I went to pick up my two older daughters from Sunday school afterwards, a woman standing behind me gently tapped me on the shoulder and asked, “Are you all right?” I turned around and was shocked to recognize her; she’d been sitting in the row in front of me. Had she heard me crying? Did she think I was crazy? I was mortified and wished I could melt away right on the spot.

Before I could say anything, she confirmed my suspicions by saying, “I noticed you were crying in service earlier. I just want to make sure you’re OK.” The tears started to pool at the corners of my eyes as I thought about covering up the honest answer with the convenient, “I’m fine.” But something happened in that moment when I looked into that woman’s eyes. I didn’t see admonishment or judgment or even pity but rather concern and kindness. Her gentle probing broke down my walls, and I blurted out, “My son passed away a few months ago, and I am still dealing with his loss.”

The woman reached out and pulled me into an embrace and said, “I am so sorry.” I rested in her comforting arms for several moments, completely amazed by the kindness and compassion this stranger demonstrated in the most unexpected way. In that moment, she was my hero because I’d been overwhelmed by how isolated I felt from my son’s death. Her ability to see a stranger in need was a powerful act of love and kindness.

This incident set in motion the beginning of our friendship. She’s now become a close friend and has been there for me when I needed a shoulder to cry on. None of that would be possible if she had not reached out to me, a stranger in pain.

For all of February, The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

This post originally appeared on Jenna Brandt’s Blog.

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3 Moments That Sum Up How Kids, Teens and Adults View My Son’s Disability

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IMG_4809 My son, Elias, wheels joy into the angst and insecurity of shopping malls and school hallways.

People turn at the sound of metal and rubber stalking them. They’re surprised by a small blond boy with a walker. And their faces change. They brighten.

Sometimes their smiles are more nervous than joyous, but even these nervous smiles offer a flicker of light.

***

Three teens, dressed in black with chains, multiple piercings and elongated ear holes, go out of their way to hold the doors to the mall open for Elias.

They wait patiently and watch Elias with delight as he maneuvers his walker not around but over every crack and bump in the sidewalk. He calls them speed bumps and will go out of his way to find uneven ground.

Like the teens holding the doors, Elias will not take the straight path.

And by the way they smile, I see the little boy in each of them, instead of their darker exteriors, a look that frightens me because it’s so different than my own.

I don’t know why we fear what we don’t know. Is it a genetic trait passed down from our ancestors to keep us safe from Saber-toothed jaws? Are we socialized to respond to our own kind?

***

Two first grade boys sit in the hallway and watch Elias and me as we arrive late for morning preschool class. One of them stares at Elias’s walker with a quizzical look. The other one smiles.

The skeptical one asks, “Why does he use that?”

“To help him walk,” I explain.

“He can’t walk?” the boy responds.

“No, not yet.”

The smiley one says: “When he’s a kid he’ll probably be able to walk because he’s just a pre-schooler.”

I smile, “We hope so.”

“Why can’t he walk?” asks the boy who has yet to smile.

“Well, it’s kinda complicated. His brain has a hard time talking to his muscles.”

As I say this, Elias goes over to the boys, lets go of his walker, holds onto their chairs and says, “Hi!!!!”

The smiley one says,  “Hi!!!! What’s your name?”

“Yia”

“His name is Elias, “ I clarify.

The boy introduces himself and his friend.

“Can he walk without it?” asks the quizzical one, as Elias cruises from one chair to another.

“He can do what he is doing now, hold onto things and cruise, but if he lets go he loses his balance.”

“Does he fall down?”

“Yes, he falls down a lot — but he’s pretty tough.”

Still no smile. Still not sure.

“How does he get around at home? On his knees?”

“Yeah, he still crawls.”

The smiley one asks Elias in a sing song voice, “Can you show me how you crawl?”

Elias, as if we practiced this, moves to the floor and crawls around the corner of the hallway.

And the skeptic finally smiles.

Both boys get up to follow Elias.

The smiley one reaches his hand down to Elias and says, “Here, I’ll help you up.”

As Elias stands and struggles to find his center of balance, the boy says to me: “I can tell he has a hard time walking”.

I give Elias my hand, and together the boy and I walk him to his classroom.

The skeptical one stands behind us with a smile. It is not as warm and open as his friend’s, but in the space of a small conversation he moved from scared and unsure to OK.

That’s progress.

I think it’s easier for kids to make these shifts then it is for adults who live within facades of political correctness, too afraid to admit they aren’t always comfortable with what they don’t know. Terrified of giving the wrong reaction, we sometimes avoid situations with uncertainty. I know I still gravitate towards people who look and act like me. So much so that my own child can scare me.

But he won’t let me hide.

And I love him too much to stay in my own tent and avoid the unknown.

So we travel.

The truth is, I sometimes find the general tasks of parenthood — waking, feeding, changing, responding, comforting, teaching — more challenging than visual impairment and cerebral palsy.

Sometimes preparing a healthy breakfast every morning without fail, the relentless routine of daily care, the drudgery of endless repetition, is worse than walking through the mall with a legally blind boy and his walker.

I revel in the unexpected joy we give and receive.

***

A man with temporary crutches waits at the elevator with Elias and me. He smiles as Elias bounces and says, “abater” over and over again.

“Is he yours or are you watching him?”

“He’s mine.”

“He may have challenges, but he’s awfully cute.”

“Thanks.” I smile.

And then this stranger in the mall gives me this gift, this way of asking Elias’s story, which breaches the perceived distance between us all:

“I know I have a lot of challenges. What are some of his?”

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5 Reminders That Help Get Me Through a Breakdown

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Whether you have a mental illness or not, chances are pretty high that you’ve experienced a total breakdown at least once. Stress and anxiety are a part of everyday life. Sometimes, a breakdown seems like the absolute end of the world, a moment consumed by emotions, thoughts, boxes of tissues and maybe some chocolate. Those prone to regular breakdowns are people, such as myself, living with generalized anxiety disorder. Even though my sensitivity towards stressors is much higher than an average person, coping with a breakdown doesn’t get easier, just simpler.

Here are a few things that act as my friendly reminders that everything will be OK.

1. Pictures

I take a ton of pictures. Some may say I take an absurd amount. I have good reasoning behind my intentions though, considering not every picture turns out to be “picture perfect.” I like being able to have a gazillion pictures to choose from when I’m changing up the ones on my bedroom wall. The ones that bring back good memories and are with people who mean a lot to me usually make the cut. With the important people in my life living both near and far, looking at pictures reminds me that I’m loved and have a purpose.

2. Daily Planner

I keep things messy, but my life is completely organized. I started using a planner in middle school to keep track of my work — homework, tests, projects and so on. By habit, ever since then, I’ve had what I like to call my life planner. Having everything visually available to me makes me feel important in the sense that I can see I have things to do and am needed for something. Even writing down upcoming events, vacations or dinner plans is nice to have scrolled out for your own well-being.

3. Working Out 

Working out releases endorphins and adrenaline, boosting my mood and energy level. Getting into a workout routine is not easy, but once I’m in it, there’s no better feeling. I dread getting out of bed, let alone working out, when I’m upset. But without fail, exercise does the trick perfectly (and conveniently, sometimes, on my apartment floor.)

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4. Fresh Conversations

Believe it or not, it’s not always the best thing to only surround myself with the people I’m closest with. Having a fresh conversation is a great reminder that there’s room to expand my horizons and speak about things I wouldn’t normally. It in turn can change my entire outlook in a matter of minutes.  I don’t need to find a stranger and start talking to them, but I try striking up a conversation with a co-worker or coffee barista.

5. Karma

That five letter K-word. I normally associate it with negativity, as it seems the only time it’s spoken about is when someone has a grudge against someone else. In the case of a breakdown, it serves as a positive reminder to me that for all the good I may have done for others, they will be there for me as a support system. What goes around really does come around. Kindness counts!

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