To the Frightened Parent Sitting in the ICU

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As I write this, I’m sitting in the intensive care unit (ICU) listening to machines assist my daughter’s breathing. This is the sixth time (at least — maybe more) Jaycee has been in the ICU for an illness or emergency. The worst ICU stay included three weeks on a ventilator. The “best” ICU stay for her was just a one-night stay, after going into respiratory distress after a procedure. We’re no strangers to the ICU, though I would love to never return here again.

If you’ve never had a child in the ICU, let me paint a picture for you. It’s like a haunted house. You know going into it that something bad is going to happen, something that will scare you. Even when there’s nothing frightening at the moment, you’re on guard, anticipating the next scare. You know absolute relief will only come when you leave that place, but you don’t get to decide when you exit.

The characters in this haunted house don’t scare you with axes or other weapons. It’s syringes, IV sticks, tubes, machines, suctions, diagnoses or just the threat of these that make you scared.

A new parent coming to the ICU is like a small child who’s easy startled. Me, I’ve been through this haunted house a few times. Some things that would probably horrify first-timers don’t make me flinch at all. Being on bi-pap continuously doesn’t bother me much, although I know it’s not ideal. Holding my child down to assist with a necessary blood draw or cannula placement is second nature to me. But the ventilator — now that machine terrifies me. It means she’s dangerously close to an exit I hope I never see. Watching the placement of long tubes isn’t pleasant either. I find a way to shield my face so I won’t see what’s happening.

There are no ugly decorations or darkness in this place. In fact, it’s rarely ever dark. Instead, this haunted house has simple monitors displaying numbers that can give you a sense of relief or send you into a panic. The alarms, beeps, buzzes and dings at unexpected times can be frightening. The images of your child enduring such awful, unimaginable things as a result of those alarms will scare moms like me for weeks, months, even years to come.

But not everything in the ICU is terrible. There are some really nice people here. They are doctors, nurses, residents and respiratory therapists. They mean no harm when they’re part of the scary moments. They’re trying to save your child’s life, which sometimes calls for things that make us parents squeamish.

So if you ever find yourself in this place waiting for an exit, do whatever it takes to fight off all the fears, imagery, bad news and worst case scenarios. Find a positive song, verse, person or activity to help you through. It won’t be fun. It won’t be easy. But when you leave that haunted house holding your child’s hand, it will all be worth it.

This post originally appeared on A Special Purposed Life.

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How a Stranger’s Gift of a Quarter at the Hospital Changed My Life

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A lot of people have lost a child, but when you’re going through the loss yourself, it seems like you’re the only one in the entire world.

People don’t talk about it very much, and I get why they don’t.

This is my life.

The good news is I’ve been in contact with a lot of great women who have been supporting me through this lifelong journey. Unfortunately, they can support me because they, too, have lost a child.

Today I want to share with you the story about a woman who gave me a quarter.

But not just any quarter.

The day after my son, Alexander, passed away, we made our daily trip to the hospital to visit our other children, Max and Artemis.

Even after losing a child, life just continues on. So unfair.

While my husband, Ed, was parking the car, I took my travel mug inside to get hot water for my tea. It’s something that I do every morning.

Usually, I go up to the cashier, tell her that I just got hot water and go on my merry way.

But not today.

Today there was a new girl.

She told me my hot water would cost me 25 cents.

I didn’t have a problem with the fact that she wanted to charge me. I mean, they did have to pay for electricity to heat the water. The problem was that Ed had my wallet.

I didn’t even have 25 cents to my name.

In a daze, I told her I would have to dump out my water.

I felt beat down.

It wasn’t just a quarter.

It was a sign of the state of my life.

I couldn’t catch a break, nothing was going right.

Nothing.

Then, the faceless woman behind me reached into her purse and put a quarter in the cashier’s hand.

“I’ll pay for it,” she said.

I was moved to tears.

There was no way for this woman to know the effect her generous gift had made on my life.

Forever.

I’m not sure if she knew that her quarter was “not just a quarter” to me.

The moral of the story: Be kind. You never know if the person you gave a quarter to is mourning the loss of a child.

A version of this post originally appeared on Journeys of The Zoo.

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.

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I’ve Spent Most Days Trying to Anticipate Her Every Move. But Not Today.

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I’m perched on a faded park bench while a cover band plays Violent Femmes songs. Their music fills the hot and humid summer air as the sun beams down on my shoulders. In front of me, my daughter dances.

I watch her from my spot on the bench as she twirls — almost effortlessly — to the music.  She spins, her arms outstretched and open to the world around her. A contagious smile spreads across her face. I smile too as she claps her hands and stomps her feet to her very own rhythm. She runs in circles and squeals with delight. I watch her feet pound against the hot cement, and as the music increases in speed, so does her running and her laughter.

In my mind, this moment — my daughter carefree and dancing — is not supposed to be happening. Not long after Ceci was born, we learned that she had hypotonia, and the broad range of delays and abilities associated with this diagnosis made it quite possible that she may never walk or run or dance.

But she is, and I feel as if I am in a dream.

I want to join her on that hot cement dance floor, just a hand’s touch away. I want to be “right there” to catch if her if she falls. I want to be the first person to kiss a scraped up knee and wipe away any tears. I want to prevent her from possibly getting hurt because for two years, that’s what I have done. For two years, that’s who I was: her protector and her comforter.

And when she finally walked, I was by her side for each step she took— to help her if she stumbled, to hold her if her muscles tired out before her mind did. There’s not a mile nor an inch that she has traveled where I haven’t been at her side, prepared to soften any blow that may come her way.

I have spent most of my time anxiously anticipating every move my daughter makes. Part of me is thrilled at the idea that she is making tremendous progress — that she is walking and running and dancing. Another part of me is consumed with worry that she will get hurt, so I never move too far away from her — until today.

I prayed for this moment, for her to be able to walk and run and dance. I told myself that when this day came, I would cherish each step she took. I promised myself that I would never complain, like some parents do, about how “once they start walking, they just won’t stop.” I was OK with that. I would follow her to the ends of the Earth, cheering her on each step of the way. I still will.

But I know my place today. I am supposed to be more than an arm’s reach away from her, unable to catch her if she falls this time. Today, I am not supposed to be right at her side. This dance is hers and hers alone — each twirl, each clap, each smile and each giggle is hers. My place is on the bench, and that’s OK.

The Mighty is asking its readers the following: Share with us the moment, if you’ve had it, where you knew everything was going to be OK. 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.

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She Told Him She Couldn’t Handle a Trip to New York. So He Made This Promise.

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Photographer Brandon Stanton’s Humans of New York Facebook page shares striking photos with short quotes from people in New York City. We particularly loved a recent post (below) on the page, for highlighting the unconditional support and strength people can find in each other when going through a difficult time.

“I’ve been having nerve issues, and this past year it’s gotten so bad that it hurts too much for me to walk. It was...

Posted by Humans of New York on Wednesday, June 17, 2015

The Facebook post reads:

“I’ve been having nerve issues, and this past year it’s gotten so bad that it hurts too much for me to walk. It was completely unexpected. I’ve always been such an optimistic person, but now I’m fighting with depression. He’s doing everything he can to take my mind off of it. We’re not sure if I’m going to get better, but he’s planning a backpacking tour through Europe for when I do. And I told him that I didn’t think I could handle a visit to New York right now, but he told me that he’d push me around the whole city. And he has. And whenever I feel particularly down, he tells me that he’s not going anywhere, and how happy he is that he married me. Not long ago I had a particularly rough period, and when I was at one of my lowest moments, he asked if we could renew our vows.”

This is what we like to see in our Facebook newsfeed.

If you or someone you know needs help, please visit the National Suicide Prevention LifelineHead here for a list of crisis centers around the world.

Related: She Warned Her Blind Date About Her Wheelchair and Got the Perfect Response

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Why I’m Stressed About My Father-Daughter Wedding Dance Song

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I’ve been searching the Internet for weeks now, trying to pick the perfect song for the father-daughter dance at my wedding. I’m marrying the love of my life in a month, and I’ve been swept up in dress fittings, ring shopping and day dreams about our future together. I’m not stressing out about the little things you see on wedding reality TV shows, like the flowers and the color of the tablecloths. But I do want the song I dance with my father to be perfect. But where to start?

I’ve asked my father for suggestions, but he doesn’t know where to start, either. I want the perfect sentiment to be expressed, a three-minute snippet to show my unspeakable gratitude for my father, the most devoted, loving and hard-working man I know.

I want a song that will evoke the joy he’s constantly filled my life with. Every 22-hour road trip to Disney World, every piano recital he sat through, every karate class he carpooled me to — what kind of song will let him know I remember every small, selfless act? 

Maybe my father isn’t much help with song suggestions, because he’s too overwhelmed with feelings. I often wonder how he feels letting go of his only girl and youngest child. I’m sure he is sentimental as he recalls his first dance with my mother more than 40 years ago. He also must worry about me and how I will fare in the uncharted territory of marriage and adulthood.

When I become a married woman, just under a month away, I’ll be closing a chapter of my life — a chapter that has been filled with unexpected medical turbulence and a bit more time spent with my parents than I had anticipated as a teen.

Nobody could have predicted my coma when I was 18 and the life-altering events that would unfold in the next 10 years. Nobody could have warned my father that his duties as a physician would extend past his office. But without a second of hesitation, my father doubled his role as a love-filled, dedicated dad and tireless hero. My father was incredible just being my dad. But he was also instrumental in saving my life and then keeping my spirit alive.

Nobody wishes for their child to get sick, and I often think of the dual responsibilities that my father had to manage. As a physician, he understood the danger I was in as I was transported from hospital to hospital. And to this day, I still see the unwavering strength and determination in his eyes to make sure nothing prevents me from living the health-filled, limitless and vibrant life I deserve. 

When I was stuck in hospitals for months (and when he wasn’t trying to analyze my latest blood work with the nurses on call), he was taking me for wild and crazy wheelchair rides, rubbing my feet to ease the neuropathy or reading to me by my bedside. And now I just want to repay him with the perfect song.

The wedding is in less than a month, and I still don’t have a song in mind. But perhaps it’s not the song that’s so important. As a daughter, I want to show him that I love him, even when I lose my patience, or rush by him, or forget to thank him for every little act of kindness he’s shown me since I could say the word “dad.” 

I want to make my father proud, to give him the confidence that I’ll make a wonderful wife and the faith that I’ll thrive living on my own, swept away by the new man in my dreams. I want the song to show that although my fiancé is the love of my life, my father will always have my heart.

I’m still waiting for the song to come to me. All I want is to show my dad is how unconditional my love is, whether it’s the bratty little girl he raised, the moody teen, the busy bee, the out-and-about woman or the person who’s hard to reach sometimes.

But that’s the thing about fathers. They always know. Whatever the song, whatever the mood, my father knows how much I love him. I just want him to know that I know it, too!

I’m searching all over the Internet still, and I’m lost in the pages and pages that come up with “father-daughter wedding song” results. But with my heart in the right place, I hear the music already.

Amy Oestreicher the mighty

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.

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How My Son With Autism Changed Since He Started Homeschool

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I smile as a little boy’s giggles ripple through the house.

At one time my son never laughed and rarely smiled.

But his confidence has come back in abundance since I withdrew him from school and began to home educate him. He was a stammering, nervous little boy back then.

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When he first started mainstream school, I was concerned he wouldn’t be watched closely and asked for what was then a “statement of special needs.” But he was refused one-on-one support despite having three diagnoses: autism, expressive language disorder and dyspraxia. This left him vulnerable to bullying by children and a teacher’s aide. The day I found out how bad it had gotten, I pulled him out and deregistered him the following week.

It’s now been two years since he began his journey of home education, and he now has a glimmer in his eyes. He attends play therapy, music therapy, speech therapy and animal therapy. We read together, and he does online tutorials and lots of sensory play to calm and regulate him. His hobbies include photography and collecting little soccer player toy figures. He has an amazing knowledge of soccer scores and players and enjoys playing it every Wednesday on a team for children with special needs.

Every two weeks he goes to the National Autistic Society‘s Saturday club and enjoys socializing and playing with the other children. He adores his private tutor he sees once a week. We go to museums, the woods, the library and the park. He loves being with his little sister and older brothers who are also on the spectrum.

There are many things we already do with our children we don’t realize are educational: Playing with small figures and cars is small world play. Listening to a play on the radio is drama. Baking and cooking is science and math. Reading stories is literacy. Drawing is art. Playing with teddies and dolls is role play. I love the freedom of going for a walk in the woods with the children and watching it turn into an impromptu nature lesson: What plant is that? What sort of insect is that?

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Since being home, my little boy has come a long way from the melting down, upset and angry child he once was. He sleeps now, and occasionally almost through the night! He takes his own “time out,” going to the bedroom to play and chill out with his football cards and sensory toys. With the pressure to interact constantly in public school, he would have never been able to take this time. Now, he engages on his own terms, and knows when he needs to walk away.

Would I ever send my son back into the mainstream school system?

No.

Of course, with the right support, children with autism can thrive in a school setting. But I often notice some children on the spectrum find schools too overwhelming and the endless interaction exhausting. Children with autism and sensory problems might be told to hold in their feelings, only to erupt at home.

If your children are unhappy, you are not failing by withdrawing them from school. It’s simply a different way of educating. Not every peg will fit a round hole.

Pound a peg hard enough, and you will chip the paint and eventually splinter the wood. My peg is a bouncy, cheeky one, and his paint is now shiny and vibrant.

That’s all you can ever want for your peg.

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