When a Man Questioned My Son's Need for a Service Dog

519
519

In an attempt to escape the witching hour, I had the hair-brained idea to pack up the kids in the car and spoil dinner with a sweet treat. My husband was working late and I was desperate to win some smiles with ice cream. When we arrived at our favorite ice cream joint, I unbuckled the baby and helped the older two out of the car, then attached Bruce, my son’s service dog, to my belt. We opened the old door and were welcomed by a ding of a bell and a never ending list of ice cream flavors scrolled out in chalk. As I lifted child after child to peek into the glass and pick their flavor, I was startled by a man’s voice behind me.

“Unless that’s a service dog, you need to get it out of here.”

I was taken back. All three children spun around to look at the man, then darted their eyes to me. I looked at Bruce, who was wearing a vest indicating he was a service animal, as well as a patch that read, “STOP! Do not distract. Do not pet.”

“He is a service dog,” I said quietly and confused.

“Oh, yeah? For what? What disability do we have today?” he responded gruffly.

My cheeks flushed. He legally cannot ask you that, I thought to myself. You don’t have to answer him.

“He’s a diabetic alert dog for my son.”

“Sure he is…” His tone was overwhelmingly skeptical. That’s when it hit me: He doesn’t believe me. He thinks I’m lying. He sees this beautiful 5-year-old boy standing in front of him and he’s calling bullsh*t.

I spun back around to look back at the display case of ice cream, ignoring him and holding back tears. I felt judged. A stranger was attempting to invalidate my son’s need for a service animal, and I could barely breathe.

The man walked back to the corner of the shop, sat down and watched us. We ordered, gathered our cones, and found a table. I commanded Bruce “under” and he quietly tucked himself under the table and at his boy’s feet.

When my husband and I made the decision to invest in a service dog, we knew it would draw more attention to our family and to our son’s disease. We are stared at in restaurants and pointed at in grocery stores. People approach us out of curiosity and we almost always use these moments to connect, educate and spread awareness about type 1 diabetes and service dogs.

This was different. This was disease-blindness coupled with intolerance. This man did not see the need for a service animal for healthy-looking 5-year-old boy. But that’s not all he didn’t see…

We almost lost our son last summer when his blood sugar dropped dangerously low. It crashed so fast that the pricey piece of technology we bought failed to alert of a low. He did not see my son seize in the back of our car as I lunged over the backseat to stab him with a needle full of life-saving sugar.

He doesn’t see the bruises on little arms and legs from insulin pumps and glucose monitors.

He doesn’t see my 5-year-old patiently waiting while we weigh his food and count carbohydrates.

He doesn’t see the tears he cries when he feels different from his siblings and friends.

He also doesn’t see the relief in our faces or the tangible love we have for this animal. This dog saves my son’s life every single day.

Please. Look harder. We need you to see us. This is not a pet — this is a lifeline.

The author's son walking with his service dog

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. 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. Check out our Submit a Story page for more about our submission guidelines.

519
519

RELATED VIDEOS

JOIN THE CONVERSATION

One Way to Help Prevent Type 1 Diabetes From Being Misdiagnosed

6
6

“I wanted to see Merida, mom.”

“Mmmm, hmmm.”

“Was that a real Buzz Lightyear, Mom?”

“Mmmm, hmmm.”

“Can we have ice cream when we get to the hotel, Mom?”

I nod. Our bus ride home from Disney seems longer than after past visits. Each question rolling off, one after another… my mind not taking in what’s being asked. Instead I’m focused on the image ingrained in my head: blonde curls, a pink smile, blue eyes gleaming.

And my eyes blink rapidly. It seems like no matter how many times they open and close, I can’t keep the flood from arriving.

“What’s wrong, Mama.”

And I can’t.

I remember that first conversation my husband, Greg, and I had about Kycie. Two weeks ago, Kycie lost her life after her type 1 diabetes was misdiagnosed as strep throat. Multiple seizures induced by high blood sugar resulted in traumatic brain injury that left 5-year-old Kycie hospitalized for several months before her untimely passing. Since then I have struggled with her story as a mother of a child with type 1 diabetes (T1D).

I couldn’t read the posts. Yes, I’d “followed” the “Kisses for Kycie” Facebook page, but I never read a single post in its entirety. Not one. I saw each and every photo and watched nearly every video. But, for many reasons, I couldn’t read the posts written by Kycie’s mom and dad… because I felt guilty.

Kristina and her daughter, Isabella

How can you follow a journey of a family with a story that could easily be yours and not feel some sense of guilt? I know that’s not even close to the reason why Kycie’s family decided to record her journey via social media. I have no doubt the messages extended by Kycie’s family have made an impact. In fact, I know it has.

I had a garage sale today and, in the course of general conversation, mentioned to two women that one of our children has T1D. Without missing a beat, one woman said, “They should really do these blood tests on kids who come in with the flu. I heard a little girl just passed away because of a misdiagnosis.”

People are listening. They hear you. But my hope is this isn’t fleeting.

As I looked down at my daughter, Isabella, as we plodded along on the Disney bus, I wondered, “Why?”

Why was a family planning a burial for their toddler who had the same disease as our Isabella?

Why were symptoms so obvious to our pediatrician, diagnosed as strep throat by another?

What can we do about this?

As a line of tears rolled down my face, I realized the answer is simple.

Don’t settle for the obvious.

Diseases like type 1 diabetes aren’t obvious. They might disguise themselves as strep throat, the flu or, truthfully, as just plain old toddler behaviors like excessive thirst, frequent urination, lethargy and unexplained weight loss.

But you know your kid. Don’t doubt your instincts and don’t be afraid to ask for a quick blood sugar check or urinalysis. If your doctor says no, well, guess what? Your neighborhood Walgreens and CVS sell blood glucose meters, and they’re pretty cheap, too. Buy one. Don’t be OK with “everything’s OK.” Trust your gut.

As I woke up that night at 2 a.m., the sound of Isabella’s Dexcom CGM beeping to alert us to a low blood sugar, I couldn’t help but think about Kycie’s mom. I couldn’t help but think about the few nights since Isabella’s diagnosis that we haven’t had to wake up at some point to correct a high or low blood sugar, and the many mornings we wake up exhausted, REM sleep non-existent in our household.

And I feel blessed. And I feel sad.

I will see Isabella’s smile tomorrow. I will feel her little arms around my neck as she gives me a squeeze before breakfast. I will hear her laugh, cry and complain I’m pulling too hard on her hair as I brush it into a ponytail. I will argue with her about what shoes to wear and why she can’t take her nail polish to school.

But Kycie’s parents will not. Their sweet little girl’s voice is forever a memory — albeit a beautiful one — stored in their minds.

And she won’t be forgotten. We won’t let her be.

Cheers to changing the world,

Kristina

Kristina’s daughter, Isabella

Follow this journey on Inspired By Isabella.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? 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. Check out our Submit a Story page for more about our submission guidelines.

6
6
TOPICS
JOIN THE CONVERSATION

The 2 Most Dreaded Responses to My Son's Type 1 Diabetes

773
773

My son, Henry, is young and innocent. In one video we shared at a Children with Diabetes conference, Henry blithely tells the audience about a scrape on his leg, and in the next breath he shows off his pump and continuous glucose monitor (CGM), as though these two were equal. One day the stigma of “diabetes” will outweigh scrapes. But for now, he’s got scrapes, and obviously diabetes isn’t one of them.

When a stranger asks me about the gear Henry is wearing or I explain to a colleague why I had to step out of meeting a few days prior, type 1 diabetes (T1D) comes up, and I briefly explain the basics. Usually, this scenario goes smoothly and hopefully someone understands more about T1D. However, sometimes this moment makes me cringe as an over-sharing stranger tells me about his or her dead grandmother.

When people respond that way after learning of my son’s diagnosis, I believe they’re usually attempting to relate or don’t know what to say. But as a parent of a child with diabetes, the two most dreaded responses from someone who learns of my child’s disease are:

1. Oh, I’m so sorry. My grandma / great aunt / grandfather’s cousin died of diabetes. They were 48 / 52/ 57. At least I think it was type 1, or maybe it was type 2.

I usually say, “I’m sorry to hear that,” but I want to say, “I’m sorry to hear that, but please don’t tell me about your dead relative while I’m grocery shopping with my 4-year-old son who happens to have the same disease that killed your grandma / great aunt / grandfather’s cousin.

2. Well, at least it’s good he has it so young, so he won’t know the difference when he’s older. 

I usually say, “A lot of people say that,” but I want to say, “A lot of people say that, but I’m sure he’s noticed his older sister not wearing a pump and getting blood sugar checks 10 to 12 times a day. He’s also probably noticed that the other 23 kids in his preschool class don’t check their blood sugar, wear pumps or go on field trips with massive medical supplies in a backpack.”

I think Henry’s got some scrapes, but hopefully as people become more educated about T1D, they won’t add a new scrape. The first step toward empathy is meeting someone with T1D, and the second step is learning what to say. It’s great to hear, “I’m sorry to hear that. Can you tell me more about type 1?” or “I’m sorry to hear that. I’m not sure I really understand the difference between type 1 and type 2,” or even, “I’m sorry. I think I know someone else with that.” 

When people meet my son, or anyone with T1D, I want them to understand all the determination and longanimity it takes to keep a blood sugar between the lines. I want people to understand T1D is an autoimmune disease, and there’s nothing Henry did or didn’t do that caused his T1D.

I want people to know a life with T1D can be pretty sweet.

773
773
TOPICS
JOIN THE CONVERSATION

Why I No Longer Hide the Equipment I Need to Manage My Diabetes

115
115

It took a transit at the airport in Istanbul, Turkey, to prompt me to change my mindset about my chronic disease. I’ve had type 1 diabetes for 16 years. The thing about being born with a disease or diagnosed at such a young age is that you grow up accepting whatever your parents tell you about it. If they’ve got fears and insecurities, you might adopt them. If they feed you positivity, and courage, you might grow into them, too.

Throughout those 16 years, I did three insulin injections per day. I’d never do them in public – I always went to the bathroom to do it. Only at home was I permitted to do it wherever I was at. It was normal for me.

You wouldn’t think that’s so bad, but it didn’t help my suppressive attitude toward a disease I’ll have to live with for the rest of my life.

In 2011, coming back from a family holiday in Greece, we waited for our next flight at the Istanbul airport. After we finished our dinner, I had to do my injection. As I got the kit out, my mom pointed to the man at the table opposite to us. I saw he had the exact same flexpen as I did, and he was doing his injection out in public, on the right side of his stomach. When I looked up to see what she was describing, he just finished his injection and was pulling the small needle out of his stomach. I watched.

Even though I still went to the bathroom to do my own injection after that, I remembered what my mom described, what I saw. And I wanted to learn from it.

The next time I had to do my injection, I told my parents I wanted to do it in public. No more hiding in toilets or changing rooms or whatever. No more.

That stranger changed my outlook on diabetes.

I don’t blame my parents for my previous outlook – they were just doing what they thought best to protect me. But I’ve grown up now, and it’s still my disease.

I’ve recently switched to an insulin pump, which allows for better blood glucose control. On our way to an extended family reunion, my dad made a scene about the cropped plaid shirt I chose to wear. You can see the “site” where the insulin pump connects to my body. He didn’t want it to be exposed in public.

But if you see it from this perspective: during a meal, I don’t ask you to go to the bathroom every time your pancreas is producing insulin to allow glucose to be absorbed from your bloodstream, so why must I hide my insulin intake?

If people stare, that’s their business, not mine. Constantly hiding the equipment I need to manage my disease is forcing me to hide a part of myself that’s brought about some of the best moments in my life. I’d prefer strangers’ questions over any incorrect silent assumptions any day.

To anyone else with diabetes out there, please know this: Your daily diabetic routine, whether it involves injections or pumps or otherwise, doesn’t make you inferior. It’s OK not to want to display this routine in public sometimes; it’s OK if you want to hide it from certain people if that’s your decision. But don’t let those who don’t want to see it make you feel like a part of you is unworthy of acceptance.  Diabetes (however long or short one has had it) is an integral part of all of us, and like any other characteristic, it needs to be wholly accepted in order for us to move forward.

The Mighty is asking the following: Describe a moment you were met with negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. 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. Check out our “Share Your Story” page for more about our submission guidelines.

115
115
JOIN THE CONVERSATION

The Odd Advice My Mom Gave Me About Being a Special Needs Mom

629
629

Do you remember playing in the bathtub as a kid? The goal was not to get clean but to play until the skin on your feet and hands got wrinkly. Do you remember picking scabs, counting bruises or jumping up and down on the bed?

How about spending who knows how much time figuring out all the quirky little things our little bodies could do? This entailed sitting cross-legged with both feet on top of the thighs, trying to do a handstand or a somersault and climbing trees as high as possible until mom got nervous.

It didn’t matter how much time was wasted swinging at the park, talking to friends or playing basketball because there seemed to be an endless amount of time to grow up.

As an adult, time seems more limited. I find it hard to spend too much time playing make believe with my kids when there are piles of laundry waiting to be washed, dirty dishes in the sink and dinner needs to be made. It’s a shame because my kids will grow too fast, and the window of opportunity to have kid-fueled adventures is quickly fading.

Days after my son was diagnosed with an incurable disease called tuberous sclerosis complex, I cried to my mom on the phone. I told her I felt like I would never be able to move forward and enjoy being a mom again. She gave me what seemed to be odd but simple advice: “Next time he takes a bath, put on your bathing suit and take it with him. Put a bunch of bubbles in the bath and play.” She gave no explanation, and I wondered if she truly realized the magnitude of what I was telling her. How would this make my broken heart feel any better?

I didn’t really want to do it, but I knew my mom. She would make sure I did it, so that evening, we drew him his bath and filled it full of bubbles. I put on an old pair of shorts and a tank top and sat with him in the tub. He was only 3 months old, so I sat him on my knee and put the bubbles on his little nose and in his hair. His older brother stood at the edge of the tub and played with the bubbles as well. My oldest thought the notion of Mommy in the tub with her clothes on and covered in bubbles was too funny. I began to smile again. In the middle of the bubble-filled tub, I was reminded my newly diagnosed son was the same boy he was before we learned of his diagnosis. He needed all the things he had before, especially the best of his mommy.

The few minutes I spent acting like a kid didn’t solve our problems. There are days I fret, and I have had many more tear-filled conversations with my mom. But what it did do is remove me briefly from the fast-paced world of adulthood and remind me of why it is such a joy to have children. My kids are oblivious to the responsibilities of adulthood, as they should be, but I can’t be oblivious to their childhood. My children need me to be an adult, but they also need me to understand what it’s like to be a child. So sometimes I need to act like a kid. The laundry, dishes and dinner can wait wait so my kids and I can just have fun.

So if you’re reading this post, here’s my challenge to you: Go be a kid. Do it. Blow bubbles, find a park and ride on the swing. Make sure you lean back as far as you can on the way forward so it looks like your feet are touching the sky and say, “I’m flying!” Run up a slide. Hop from one piece of living room furniture to the other, pretending the floor is lava. Make a blanket fort or draw yourself a bath with way too many bubbles.

Yes, adulthood is about maturity, but it doesn’t mean all the fun of childhood should be lost. You will be amazed what a few moments away from adulthood will do for you. Make time for these moments. You will look back on them and smile. So go ahead and take a moment. Be a kid.

Danielle Myers the mighty.1-001

Follow this journey on CrossRoadTrippers.

The Mighty is asking the following: Tell a story about a time someone helped you and/or your child when you needed it most. 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. Check out our “Share Your Story” page for more about our submission guidelines.

629
629
TOPICS
JOIN THE CONVERSATION

How These 4 Words Help Me Live With Multiple Sclerosis

1
1

Lately, I have been extremely tired. On Tuesdays I attend a multiple sclerosis aquatics class but, this particular day, fatigue had me in a bad way. So instead, I opted to go to the gym and use the NuStep. I love this machine because it’s a sit-down, step exercise apparatus that works both my arms and legs.

The goal for the day was 10 minutes. Just 10 lousy minutes! That’s what I usually do on good days. What made me think I could do that today even though I was too tired to go to the pool? I don’t know. Maybe it was denial, wishful thinking or both?

IMG_0285

I entered the gym and, without hesitation, went straight to the NuStep. Within the first two minutes I quickly changed the tension level from 2 to 1, which is the easiest intensity.

Then five minutes in, I saw my husband, get up from his chair to stand closer to me. I thought to myself, “I must be swaying.” So I began concentrating on keeping my balance.

At seven minutes, I could feel myself winded and sweating, and my heart rate was through the roof. And I was still on the easiest level! Then, I made a smart move. I pressed stop. I thought a break was called for.

My husband asked, “Are you finished?”

“Nope”, I replied.

He gave me a sip of water; I caught my breath and started again.

“Only three minutes to go,” I said to myself. I needed to believe, I can do this!

I was really getting into it, when suddenly both my feet slipped off the machine. I lost my balance. My heels, legs and butt were on the floor. With the bottom half of my body on the ground and the upper half still on the machine, my workout had officially ended at eight minutes.

I just want to get better and in my delusion, this is one of the exercises that’s key to making it happen. I know you know multiple sclerosis doesn’t work like that. I know this, too. But I still keep searching for an answer.

I’m living with an unpredictable, incurable disease, so I have no choice but to go with the flow. If I don’t, I just create more turbulence for myself. And who needs that? I know it’s tempting to lean toward anger and frustration. But we help ourselves so much more if we don’t.

Despite knowing this, in the car on the way home, I lowered my head in defeat. Then I muttered to my husband, “I couldn’t make 10 minutes.”

He smiled and said, “It’s only a number.”

For some reason, hearing those four words really cheered me up. It helped me look at my new limitation in a new way.

The fact is, I may no longer be able to exercise for 10 minutes. And that’s OK because there are still other things I can do. If I can just hold on to that frame of mind, my acceptance of change will be easier.

As we continued to drive home, every time I thought about my failed gym excursion, I silently repeated to myself, “It’s only a number. It’s only a number. It’s only a number.”

“Start where you are. Use what you have. Do what you can.” ~ Arthur Ashe

Follow this journey on My New Normals.

 The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? 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. Check out our “Share Your Story” page for more about our submission guidelines.

1
1
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.