When a Man Went to Great Lengths to Help Ease My Migraine Pain

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The utility company. We’ve all had our bad experiences with rudeness, long holding times, waiting for them to show up to turn the service on or off. Perhaps there was a dispute over a bill. We take our utility services for granted, and we fall completely apart and start complaining when we lose them. We are the public consumer, ungrateful, impatient and irate. Based upon the news, at least, this is how I think we must look to the utility company.

But I have a different story to tell. It is about the water company and a man named Tony. This summer, the water company decided it was time the neighborhood had its water lines replaced. This meant ripping up the street with huge, extremely loud machines. It was going to take the spring and all summer. For most of my neighbors, this was an annoyance. For me, it was agony.

Your see, I have a brain injury and I suffer from constant migraine pain. I have a sensitivity to sound. No, let me correct that. Sound, like that from construction equipment, is nothing short of torture. I go into spasms, and my head feels like it is going to explode. I have had to endure noise in my neighborhood that actually made me feel I was going to die from the pain-inducing sound of motors.

I’ve hidden in closets, cowered in the basement, and huddled in the bathtub. I’ve used all manner of earplugs and headphones and taped pillows around my head. When I knew it was coming, I left and went to my mother’s house. But once there, it offered no guarantee I would escape the professional lawnmower service.

So, when the water company showed up, my husband and I become greatly concerned. “What were we going to do?” My husband decided to call the water company to find out what their schedule was, and more importantly, how to deal with the noise.

We were prepared to get little concern or help. But that was not the response we received.

My husband talked to a man named Tony, who immediately got on board with our situation. Not only did he have sympathy, he was empathic. He made arrangements to call my husband every step of the way to keep him informed as to where they would be and when and for how long. He also called all the contractor’s involved in the project and told them they were to keep us informed. They did.

When he went on vacation, he had his replacement call. Whenever they pulled off the job to go work somewhere else, Tony called. When they had problems, Tony called. Whenever there was any news of any kind, Tony called. We have a water treatment system in our house, so when they flushed the lines, we had to put in all new filters. He knew this, so when the time came, Tony called.

They started work at 7 a.m., so this required us to get up at 5 a.m., get me packed and ready with everything I need for the long, 14-hour day until my husband could pick me up and take me home, where I would collapse into bed, to do it all over again the next day. Every day, my husband would call from his job site and say, “Tony called,” and give me the update.

I spent most of the time lying on my mother’s couch with ice bags on my head. Sometimes, I would sit in the chair. And since I am also sensitive to light, she had the curtains closed and blankets over them. She had to awaken at 7 a.m., so this required much adjustment on her part as well. We have great love between us, so she was happy to help.

It took a long time, and tomorrow it comes to an end. And Tony will stop calling.

How do you thank a man for going to such great lengths? Had he not called, we never would have known when or if they were coming and our life would have been well beyond the threshold of how much I could endure. Even with all the calls, I had many trips to the headache doctor. It was no easy task for any of us. And yet, I ask myself, “How many Tonys are there in the world who would take so much of their time and go out of their way just to ease the suffering of one individual?”

He was always professional, he never complained, and was always ready to go above and beyond the call of duty. Just one brain-injured woman, no one important to warrant such celebrity-status treatment. And yet, even so, Tony called.

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I’m Not the Woman I Was Before My Son’s Accident

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All families have stories. Our little man, Christian, gave us a story that redefined our family and me as a mother. Or so it seemed.

When he was 11 months old, he fell into a pool and drowned. He died and came back to life a different boy from the one I gave birth to. He is now 7. His life looks very different than what I dreamed for him. But it is also full of patience and beauty and lessons beyond my what I could ever dream as well.

I was just talking to my best friend the other day, and I’ve said it before — I used to look at pictures of myself before his accident and envy the woman in those pictures. I used to want to be her again. I used to think she was so lucky to be in such oblivion of what was to come. That woman was so untouched by the magnitude of life-altering tragedy. She was so lucky. And she was so stupidly happy, yet so very far away from who I am now.

I thought.

I told my best friend I used to feel that way, but now I look at that woman and I am finally at a point where I can say I am her again. Happy and back to where I feel like I’m her again. There’s no longer a separation of before and after or who I was then and who I am now. And I was proud to say it. I am her again.

I thought.

But after thinking about it, I’m not sure that’s true because I’m not sure I want to be her anymore. I would have given anything to be her for a lot of years. But I think I like this version of me a little better. I’m as happy as she was. Maybe even happier. But I’m far more confident. I’m stronger. I’m more reasonable. And I’m more grateful. I’m more aware. I’m aware of what I could lose in a second and I’m aware of how many miracles happen every single day.

It’s a hypersensitivity. It’s an acute awareness that there is so much beauty in this world, in the little tiny moments you miss otherwise, in breathing patterns, crooked smiles, late-night stretches, pizza and brownies on Saturday nights, and the calm and silence of normalcy. It’s all so beautiful. And maybe the girl in those pictures didn’t realize that.

Christian came back a different boy, I came back a different woman.

I am not that girl in the pictures anymore.

I’m better.

Shauna and her son, Christian

Follow this journey on Christian’s Journey.

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To the Woman Who Objected to the Leash on My Child With Special Needs

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When I first saw you behind me, I smiled. We stood near each other in line for security at the airport. I had just finished loading the last of three bins onto the X-ray belt when I looked up to find you scornfully staring at my child. The blistering look you gave me didn’t go unnoticed, either. For a second, I thought maybe you were just having a bad day, but then I overheard the comments you made to your friend. I heard you tell her I’m a lazy parent. I also heard you say that people, such as me, shouldn’t have children. I heard you ramble off a list of things you would do differently. I overheard your entire conversation.

Based off what you saw, I don’t blame you for having said what you did. I understand where you were coming from. It’s nice to know you were feeling protective over my child. After all, you saw a cute 2-year-old brunette with big brown eyes, jumping, laughing and having fun with her tether strapped onto her back. I agree with you; children don’t belong on leashes, and I often feel as if I’m not good enough to raise such a beautiful child. Not that you would have cared, but I wish I could have shared with you a few things that weren’t so obvious at that moment. I wish I could have talked to you about what you couldn’t see.

Lynda Coto the mighty.2-001

The little girl you saw in the airport isn’t your “typical” child. I know she looks “normal” on the outside, but on the inside, she’s special. What you didn’t see is that my child is partially blind. As a newborn, she suffered a stroke. Her brain injury has caused her to have a very difficult time in public places. What wasn’t apparent is the noise in public places, such as an airport, can be very distressing and overwhelming for her, often causing her to run away. What wasn’t so obvious is she has difficulty seeing and listening at the same time, not because she is unruly, but because she can’t divide her attention between sight and sound. What you didn’t see is that she has difficulty walking, often tripping and falling down. What I wanted to tell you is I tried your stroller idea, but she started to lose muscle tone from lack of exercise. I really wanted to talk about the daily struggle to keep her safe, but before I could address your concerns, you walked off to catch your flight.

You see, the day I left our developmental pediatrician’s office to buy my daughter’s new accessory, I knew you and I would meet one day. I knew what you thought of me long before I heard your spoken words. I knew you would talk about me and disagree with my parenting choices. What I didn’t know is how bad your words would hurt. I didn’t know that something as silly as an opinion would pierce through my heart every time I secured the tether onto my child.

I still think about you. But now, when I recall our encounter, I am filled with gratefulness. Thank you for causing me to recognize how strong of a woman I am. Thank you for shining a light on the lengths I will go to ensure my child’s safety, even if it means taking one for the team. Thank you for helping me understanding that in moments of pain, I can find happiness in my daughter’s smile and sound of her laughter just as I did that day in the line of security.

Follow this journey on A Beautifully Messy Life.

 The Mighty is asking the following: Write a thank-you letter to someone you never expected you’d thank. 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.

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'He Used to Be in a Coma, I Used to Be a Fat Guy.'

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It started with a deal.

“He used to be in a coma, I used to be a fat guy,” Rick Delashmit wrote on a photo he posted to Imgur of him and his son this week. “If he’s standing, I’m running.” That photo has since earned more than 2.5 million views.

My son is recovering from a brain injury. We have a deal now…if he's standing, I'm running. He's up to 90 minutes and I'm down 70 lbs.

The Delashmit family was in a car accident in 2008, leaving everyone virtually unharmed, except for the oldest son Reece. The then 4-year-old was airlifted from the scene, fell into a coma and spent almost four months in the intensive care unit.

Reece, now 12, has made great strides since the accident. Although he’s still unable to speak, he’s now able to eat and drink normally. Reece uses a wheelchair, but he can walk a few dozen yards with the help of a gait trainer.

“He’s come so far from being tube-fed, bed-ridden, unresponsive to stimulus when he came home from the hospital after our accident back in ’08,” Delashmit told The Mighty in an email. “He’s in school, he’s learning, he’s communicating, he’s a chick magnet, he’s smiling and laughing all the time.”

Last year, Delashmit realized that his weight was tipping the scales at 215 pounds, heavy for his 5-foot-2 stature. He decided to make a deal with Reece that’s resulted in great progress for both of them. When Reece practices standing up, Delashmit runs on the treadmill.

To date, Delashmit has lost 70 pounds, and his son can now stand for 90 minutes. Before the pact, Reece couldn’t stand for more than a half hour, and Delashmit couldn’t run 1.5 miles without stopping. Now, Delashmit can run 6 miles in about 50 minutes.

Delashmit’s before and after the deal.

The Delashmit home has been completely accessible since early 2014, and their home gym/therapy room has enough space for all of Reece’s equipment, as well as a treadmill and weight machine.

“It just occurred to me that I’ve got the most amazing motivation for hard work and perseverance right in front of me,” Delashmit told The Mighty. “Once we could be in the same room working at the same time, there really was no excuse any more not to keep up with his pace.”

The pact has brought the Delashmit family even closer, and Delashmit often captures Reece’s determination, as well as his other family moments, and posts photos and videos to Imgur, Reddit, YouTube and Facebook.

 

A Bond Between Bro’s

 

My oldest hasn't been able to speak since suffering a brain injury in 2008, but that doesn't stop him from comforting his little brother when he's not feeling well.

View post on imgur.com

 

h/t Runner’s World

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When a Heart-Rate Monitor Showed Me How Strong a Mother's Love Is

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Stories often circulate about the healing and comforting power of a mother’s love. It’s something that’s simply accepted and understood by all of us. But for a time, I believed that it was a power lost to me — until a heart-rate monitor showed me otherwise.

In the weeks following his accident, my son, Harry, was in a coma, on a ventilator and had no less than six tubes going into his 11-month-old body at any one time. I ached to hold him and bury my face into the warm, chubby little folds at the back of his neck. The physical pain of not being able to wrap my baby in my arms was sharply felt throughout my body.

As soon as he was breathing on his own, I attempted to hold him for the first time. I was terrified. Terrified of holding my own child. It took two nurses, a doctor and my husband to attempt to delicately place him in my arms, while ensuring that none of the lines got tangled and that the tube draining fluid from around his brain (the most important tube) was carefully monitored.

But I knew of the healing touch of a mother. Perhaps this would be the miracle we so desperately craved. My touch would heal, calm and reassure my son.

Slowly, carefully, down into my arms. Finally, I could feel the familiar and comforting weight of my son in my lap. And then I felt warmth on my arm. The tube draining fluid from around his brain was leaking. He was carefully and quickly placed back onto the clinical comfort of his hospital bed.

Time passed, the tubes were removed. Harry then entered the confused and agitated stage of recovery after a brain injury stories”>traumatic brain injury. In this stage, adults recovering from a brain injury are often verbally abusive and have to be carefully watched for fearing of hurting themselves or others. They are unable to control this behavior as they struggle to make sense of the world around them.

Harry began whimpering during this stage. His hospital room had to be kept dark. No stimulus. Just quiet and the sounds of my boy whimpering.

For three weeks, he whimpered. For three weeks I held him, day and night, unable to comfort him. Occasionally, there would be a brief moment when my voice would calm him, and he would be quiet and peaceful. But just for a moment. Time passed, the whimpering ended.

Having been a mother for only 11 months, I feared that I didn’t have the touch of healing love that I so desperately wanted to envelope my son with. I wanted him to know that everything would be OK, his mom was with him and everything would be OK. Time passed, but my seed of doubt remained.

Harry went back in the hospital for major neurosurgery. After the procedure, we were told to go to the Pediatric Intensive Care Unit (PICU) to meet him. The surgery, while successful, was more complicated than his surgeons had hoped for and our little boy was having a tough recovery.

There he was lying on the hospital bed, eyes shut, head bandaged up, whimpering. He wasn’t comfortable. From months of obsessing over hospital monitors, I noticed his heart rate was elevated: 140, 142, 141, 142 …

I wrapped my arms around him: 130, 126, 121 …

I put my face to his: 118, 114, 110 …

I kissed his closed eyes, kissed his forehead: 108, 105, 100 …

I whispered that his mom was here and that everything was going to be OK: 98, 92, 80.

A version of this post originally appeared on Give the Boy a Chance.

The Mighty wants to hear more about relationships and special needs parenting. Can you share a moment on your special needs journey that strengthened your relationship? 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.

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Why the Decision to Blog About Your Special Needs Child Is Never an Easy One

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“Don’t wash your dirty knickers in public.”

My grandmother’s advice is ringing in my ears. I was brought up not to talk openly about private family matters; it was very much frowned upon. That’s why my recent decision to start blogging about my son’s birth brain injury (hypoxic ischemic encephalopathy or HIE) hasn’t been an easy one. 

I’m filled with doubt and questions. Should I really be doing this? What would my son, Leo, want me to do? What will he think if he reads it when he’s older? Which parts of this story are mine to tell and which bits belong to him? 

In the early days just after his birth, I knew there was a risk that any blog would be driven by too much pain, too much raw emotion. I thought of my grandmother’s advice and was afraid to embarrass myself. But the thing that’s always frustrated me is how little people on the outside understand what this journey feels like. How little I understood what it was like until it happened to me.

Leo is now nearly 3 years old, and it feels like the right time to talk. It seems everywhere I go, I’m reminded that it’s something I must do. 

For example, today I took my son to the hospital dentist. As we waited for our turn, the door opened and a woman came out with her adult son. He has cerebral palsy and was in a wheelchair. I could see they looked stressed; they were having some sort of disagreement. “Mum, I can do relationships!” he shouted. Immediately, she started whispering at him to be quiet. I tried to make eye contact, to smile at them. “It’s OK,” I wanted to say to her. “You don’t need to feel awkward in front of me, I am one of you!” But she didn’t see me, and they left.

I know from an outside perspective my child probably doesn’t “look” disabled. You can’t see the scar on his belly from the feeding tube, I don’t carry around the telephone book-sized piles of medical notes we have at home. At first glance, you wouldn’t know the journey we’ve been on and the challenges we face. I feel caught between two worlds – the disabled community and the “typical” one. I don’t know where I fit.

Our culture tells us that disability can be easily spotted – we’re told that all people with cerebral palsy are like this, all people with autism are like that. We assume that disability is fixed, that it’s black and white. It isn’t. Disability can be a changing picture, things can go forwards and back. It’s difficult to put it in a box — it’s complicated and confusing. Perhaps this is why as parents we shrink away from labels. Labels are one way of cutting through the confusion, a short hand to help explain it all, but they don’t really mean much to us. They don’t describe our children.

When I think of my son’s label – HIE – I realize he’s just one small part of a diverse group. In wanting to tell my HIE story I know I can’t possibly encompass it all, I can’t do it justice. There’s no way I can describe what it’s like for everyone who finds themselves with an HIE diagnosis; all I can do is say how it is for us.

As parents of children with disabilities, we must be brave and bring our stories out into the light. It’s only by showing people what it’s really like that they can start to understand. Maybe they aren’t listening, maybe they don’t want to know. But at least if we try, we’re beginning to break down stereotypes and build a world where the word “disabled” doesn’t feel so alien.

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