Baby hand gently holding adult finger.

To the Doctor Who Told Me Not to Get Attached to My Baby

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You told me 5-month-old baby had been born with a fatal illness. You told me he would become “vegetative” and die before his 2nd birthday. You told me not to become attached to my baby and find a nice pediatric nursing home for him because it would be the best thing for everyone. You told me there was absolutely nothing that could help my beautiful baby.

I didn’t follow one word of the instructions you gave me. I was already attached to my baby, and rather than accept the inevitable outcome you described, I chose to fight for the life of my baby.

I hated you that day. You casually ended all hope for love and happiness for my baby.

I no longer hate you; I pity you. Your words were a reflection of you, your background and experience with life. Your words have nothing to do with my son’s potential or value. I was able to recover from that last appointment with you pretty quickly and begin my quest to save my baby, a baby you saw no point in saving.

My son will be 19 years old on October 9, 2016. He just graduated high school, and I was in tears hearing his teacher speak about him and how everyone at school loves him. The teacher also mentioned how intelligent he is and how he made improvements in math as a senior. She told everyone how much of an impact Max has had on the staff and students. Max is nonverbal and disabled. But even with everything against him he’s shared himself with others and made an impact on his own, without me. This is more than I ever dreamed possible. He’s happy and lives a meaningful life full of activity and an abundance of love.

So to the doctor who told me 18 years ago not to become attached to my baby and look for a nursing home where he could die without “disturbing” the family, I say this: you should really be more careful about what you say to parents when giving them a horrible diagnosis. I understand you don’t want to give false hope, but some parents might believe what you say and listen to what you tell them to do. I wish you could have been at Max’s graduation. The boy who had no hope and no future is a happy, well-adjusted young adult. I hope knowing this would help you do a better job of delivering bad news in the future.

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What My Colleague Didn't Know When She Asked 'What Happened to Your Face?'

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Traveling extensively for my job while living with a chronic illness is an adventure. How will I handle my luggage and my cane in the airport? Do I have enough medication to last me for my entire trip? How close to the hotel are the hospital and pharmacy, just in case? Do I have enough cash with me to pay for help if my body fails me (bag carrying, taxis, etc.)?

One trip each year is always harder than the others. It is the “big deal” annual event in my industry. Everyone who is anyone is here to meet and greet and network and buy and sell and determine business plans for the next year. I always arrive at this event exhausted from all of the preparation, but one year was particularly brutal. In the two months leading up to the trip:

My father died unexpectedly, causing unimaginable stress.

I began having trouble breathing and couldn’t walk further than 10 feet without sitting down to rest.

I was on “ridiculous” doses of steroids trying to hold my body together while it was causing the typical “moon face.”

I had just started a new treatment and was dealing with unanticipated side effects.

I worked 18 hours a day getting ready for this event and was beyond exhausted.

By the time I arrived at the hotel I was tired and fragile, but looking forward to meeting with colleagues and talking business. I was going to make the most of this event despite my personal tragedy and my frustrating disease.

Shortly after arriving, I met up with a colleague and her first words upon seeing me were, “What happened to your face?” as she recoiled because of my appearance.

How did she know this tired, fragile, not feeling well, on-way-too-many-steroids-for-far-too-long vulnerable version of myself would be uplifted and encouraged by a horrified reaction to my disease-ravaged body? (O sarcasm font, where art thou?)

This happened right after I landed a huge contract that I had been working toward for a few years. It would involve a lot of work including on-camera promotion and was basically a “woohoo!” type of deal. Instead of celebrating though, I was devastated my disease was more prominent than my work and could only worry about filming with this steroid “moon face.”

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I never told this colleague how she devastated me that day. I survived the industry event, fulfilled the contract and showed up for my on-camera appearances despite the “moon face.” I’m tickled to report my disease has calmed down since then, my “moon face” is going away and I’m looking forward to being exhausted for the next industry event. I hope no one recoils from my appearance then, but even if they do, I’ll keep trying to live an outstanding life in spite of my diagnosis.

Follow this journey on Relapsing Polychondritis

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We Challenged People to Write Honest Captions for Their Facebook Photos

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Our social media identity is a carefully curated version of ourselves — and unlike real problems, an unwelcomed Facebook photo can be rid off with a single click.

While a picture is worth a thousand words, how often do we use photos on social media to tell the whole story? Those who live with mental illnesses or other conditions are familiar with the concept: There’s the you shown to the world, and there’s the “real” you, the messy you, who often doesn’t get as much airtime online.

To get some transparency on the web, we teamed up with PostSecret and Active Minds to collect Facebook photos with truly honest captions.

You’ll find these pictures are worth so much more: 

A girl in a bus. Text reads: I look happy in this picture, but it takes everything I have every single day not to kill myself because being alive hurts so, so much.

A man looking down at a gun in the dark. Text reads: "I still don't know why I chose to live that night. I still don't know if I'm going to keep choosing it, and I reenacted this photo to show it."

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Red-headed model. "In this photo I may look very confident and self-assured, but behind the facade is this immense fear that because of my thyroid scar I cannot pursue modeling and performing as I will not be wanted. I'm trying to soak in every moment now and hope that there is a future for my passions. I was also managing my anxiety with the stranger who was my photographer."

Woman at the beach: I'm broken, sometimes drowning in unreasonable fear. But there are some moments when I remember, it's all going to be OK."

selfie of blonde woman. Text reads: "My face is haunted with exhaustion, stress and worry these days since cancer attacked my 10-year-old daughter."

Woman taking a mirror selfie. Text reads: "I've gained 100 pounds since this picture. People have asked me what happened to my diet. It wasn't a diet, I just stopped doing drugs and replaced them with food."   selfie of a woman laying in bed. Text reads: No one wants someone who is chronically ill.
cat. text reads: This gorgeous ball of fluff, and her predecessor, healed my soul in ways medication will never be capable of.   selfie of a woman. Text reads: I have terminal breast cancer, I smile so other people feel better. Behind this smile I am wondering when my last breath will be taken.
woman with a baby. Text reads: "In this picture I may be smiling because that is what I am supposed to be doing with my newborn sleeping on my chest, but in reality I just want to get up, set him down and run away. I was miserable in this picture struggling with PPD...I just thought I wasn't cut out for motherhood."
diagram of a brain. text reads: "I'd give anything for a safe treatment, let alone a cure, for my beautiful little girl. I wish I could take it from her brain and put it in mine. I'm angry at the world over this. Quit calling me strong. She doesn't deserve this. I live every day with fear of a rupture."
woman with sunglasses. Text reads: I wear them on days where I don't have the strength to meet the eyes of others. I wear them when I'm so exhausted my entire body hurts and I don't have an explanation yet because nobody will tell me what's wrong with me. I make sure I look well on the outside even if I'm half dead on the inside. I'm chronically exhausted, and hiding it.   woman and her daughter. text reads: I may seem like a totally normal hip Mom. But inside I am crippling with fear every day.
  woman on a carousel: This picture was taken at Disneyland just hours before my first ever anxiety attack. Being at ‘the Happiest Place on Earth’ made me realize how unhappy I was. I didn't get out of bed for days after. I look like I'm having the time of my life but I know how sad I really was.
  Woman outside. Text reads: "This is one of the rare moments that I wasn't filled with crippling depression while I was homeless with an abusive partner. It was the day I decided to change my path in life. Two woman kissing. text reads: This beautiful woman saved my life, more than she will ever realize. She pulled me out of a very dark place and showed me how to live and love and trust. She will forever have my heart. dark selfie of a woman. Text reads: I put this pic up and everyone thought I was just being artsy. I was just really sad and in a dark place. I guess I was hoping someone might get it.
  Selfie of a woman: Text reads: This was one of the many suicidal faces out there. This was someone who tried killing herself not even a month ago.
  Woman holding a sign that says.: I won the war against depression. Text reads: Keep living.. life can get better.
  planes. text reads: Just minutes before I took this picture, I had a panic attack in front of about 30 women and men I had just met. I got this amazing opportunity to fly on a military jet and watch it refuel other jets from 27,000 feet up. I'm not afraid to fly as I live 2,400 miles from home and do it often. As soon as they closed the door to the plane, the panic set in. I'm trapped. Chest tightens, vision goes blurry and my hearing starts to fade. They told me I had 30 minutes to make the decision of whether or not I wanted off the plane before takeoff. With deep breaths and my head between my knees...we ascended and this ended up being one of the most memorable days of my life so far! Proud moment of someone diagnosed with GAD and OCD!
  Group of guys at a party. Text reads: This is me, in yellow, at my birthday party. This is the face of a guy who wants so badly to enjoy his birthday, but is being torn apart on the insides. This was one of the worst nights of my life. As the party started, my guest list of 20ish people all showed up, but then the people kept coming. Which wasn't a big deal, I knew and grew up with them all, except that it was a big deal, because it was unexpected. The anxiety absolutely crushed me to the point of leaving my own party early. But not until it tormented me for several hours. I was devastated for days. Photo of a lady at the hospital: I put on a funny ‘I got this face’ but inside I'm screaming to be normal and weeping for the life I used to know and love.
  A woman and daughter showing their semi-colon tattoos. Text reads:Mental health issues run in our family. I will not let this mental illness own me like it did my mom until she took her last overdose. Here I am with my daughter with our new semicolon tattoos. We both struggle with mental health. We are surviving and sometimes thriving. Our story is not over; we will continue to chose life.”
Picture of family with their faces blurred out by marker: Every morning I wake up determined to be a happier, healthier, more positive wife and mom...and every night I go to bed telling myself I can just try again tomorrow
selfie of a woman. text reads: PTSD looks like this. Just trying to get outta bed every damn day. Selfie of a woman. Text reads: Depending on the angle, you can see the sadness in my eyes.
  two girls spinning. text reads: I was in agony - my walking stick was out of shot but every twirl tasted like freedom
  woman. text reads: I wish I could hear my own voice instead of hearing his voice telling me I'm not good enough.
man. Text reads: Introverted, no real social life, no one to hang out with, no life, depressed. a woman playing guitar. the text reads: I just want to live out my dream and share my music with others...but my anxiety consumes me
  Woman, shirtless with her back to the camera. She has many tattoos. Text reads: I've hated myself and my body my entire life--until this year. Now I'm killing it.
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To the Child Who Didn't Hear Your Name Called at the End-of-Year Award Ceremony

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Ah, end of term.

Sports days, shows, school trips, report cards and of course the all important end-of-year award ceremony. Proud parents just as excited as their children, relieved teachers glad to show someone really loved their teaching, and halls full of eager little ones hoping and praying their name will be called.

You already know social media and family gatherings will be all about little Jane who had a distinction in math or young Brian who scored the most goals for the school football team this year… but what about all those children sitting through the ceremony year after year longing for their name to be called yet never hearing it.

What about the children who have found the school year exhausting, who have struggled to master 10 new spelling words a month and who have needed support every single term? What about the child who’s had huge difficulty focusing and whose grades have reflected that? What about the child for whom just getting through a single day with the noise, bright lights and confusing smells is a huge achievement? What about the child whose health issues mean getting to school is an achievement in itself?

What about the children like mine?

Each year they become more and more disappointed.

More and more children with special needs are being educated in mainstream schools. It has huge advantages, but at this time of year of competition and recognizing achievement it can be so hard for a child who has tried his best day in and day out and still never hears his name at the award ceremony.

I wish I could speak to every one of those children. I wish could hug every one of their parents. I know the heartache of seeing your child feel left out.

Stay strong, children. Stay strong, parents. In cheering on others and noting their successes, you are developing character, and if that was ever measured you would win without a doubt.

One day the world will realize a person cannot be measured in awards.

Until that day, if your name is never called at that award ceremony, stay strong. Your worth is not measured by certificates. Your importance is not measured by how many people cheer.

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You are important. You are worthy, and you are special. You are the best at being you, and that is better than any award any school can offer.

I’m not sure if you can hear it, but I am cheering you on. Keep up the great work!

A version of this story first appeared on Firefly.

Follow this journey on Faithmummy.

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The Things I Sense Right After I’ve Had a Seizure

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I’m participating in everyday rudimentary tasks, from sitting in class, running a mile or hanging out with my friends. Until I’m no longer participating.

My body is present, but my mind has checked out.

All of these things fade into darkness.

Silence.

Oblivion.

There is nothing.

***

Sensation overload.

Too many things at once. My head hurts. Too much noise.

There are sounds. Voices calling out a name. Who are they calling out for? Wait, that’s my name.

One of the voices asks me to wake up, to respond.

I can’t.

I want to go back into the darkness. I’m exhausted, and I want to sleep for the next three weeks.

More voices. This voice is familiar, but I can’t quite place it. Who is speaking to me? I think I’ll take a nap and worry about it later.

The voices won’t let me. They coax me to wake, but everything in my body tells me to succumb to the silence residing inside the dark crevices of my mind.

I want to cry.

My head hurts.

My body aches.

I’m exhausted.

The voices are incessant in asking me to wake. I decide to muster the will to do so.

My heavy eyelids flutter open.

I immediately close them back.

It’s too bright.

They’re too heavy.

I’m too weak.

This small movement has alerted the voices that I’m in here — they have a field day.

Now I really have to get up. I try my eyelids again. It’s too much. They shut back.

But the voices won’t stop. I try again — this time keeping them open.

There are objects. They must be people, but my eyes won’t focus just yet.

One of the voices asks me to tell them my name?

What did they say my name was earlier? Tayler?

Yes.

My name is Tayler.

My voice is quiet. Barely a whisper. It’s comes out with a raspy exhale, sounding unnatural to my ears. The name feels foreign on my lips. I begin to wonder if that is really my name or just a figment of my imagination. I test it again. “Tayler.”

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The voices smile down at me with glee — it must be correct.

They ask me to tell them their name. How would I know who they are? I can’t see them yet. My vision is blurry and out of focus. It’s making my headache worse.

The voice, whose familiarity I still can’t quite place, repeats the question.

My vision shifts.

I startle.

Too many faces.

I need to focus on the voice speaking to me. It’s gentle. I have a nagging sense I know this person. Their face is eerily familiar, and I must’ve heard their voice a thousand times over. Who is it?

They ask me again to tell them who they are. The answer is hiding along the outskirts of my mind. I know it’s there, but I can’t quite reach it.

I keep silent.

My eyelids flutter closed again.

The voices won’t quit talking. Why won’t they hush?

All of a sudden I’m bombarded with information. I know who the voices are. I know where I’m at. I know who I am.

I’m embarrassed.

Why here? Why now? Why me?

I’ve had another seizure. 

Imagine someone Googling how to help you cope with your (or a loved one’s) diagnosis. Write the article you’d want them to find. If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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The Before and After of a Mom to Children With Special Needs

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Before.

Before is a life captured in old photos that have been shoved in a box instead of displayed in frames. Before has no wrinkles, sleeps 10 hours a day and ponders ambitious career directions. It’s best to ignore Before..

And then came a 15-year college reunion, which despite my resistance of acknowledging Before, sounded liked a good idea. A girls getaway, a break from reality! So I went, and there was Before staring right at me in the face. There was no hiding from her.

Before was sleeping in an un-airconditioned dormitory with old friends, drinking cheap beer and reminiscing muddled stories from years past. Before was wearing last night’s makeup and ratty sweatpants, eating runny eggs in the dining hall and recounting the jokes from the night before. Before was running into an old boyfriend and remembering
how it used to feel being 19 and obsessed with an old love. It was Before.

Before marriage and mortgages.

Before three stressful pregnancies.

Before the in-utero diagnosis.

Before cerebral palsy.

Before multiple online support groups.

Before the calendar full of doctors appointments knowing there would be lots of questions answered by blank stares.

Before IEPs and four different therapists.

Before hours on hold with health insurance companies and doctors offices.

Before a plateaued, dangling-by-a-thread, career.

Before constant worrying, insomnia, and chronic headaches.

Before watching a friend lose her baby with the same diagnosis, knowing it could
have been mine.

It was Before.

I cried on the drive home. I missed Before. Why did I not understand how amazing Before was when I was actually living it? When broken hearts and midterm papers were my biggest problems, but easily solved? I wanted to strangle naïve and ignorant Before. I missed my exit. I nearly missed my flight.

And then I got home, and was greeted by After. After is raw and relentless. After doesn’t allow for sleeping in, has no sick days and gives no time outs. After cries in the car. After is constantly threatening to add on more complications. After has changed me so much that it is hard to remember Before. How can Before and After be the same person?

And then I realized…

After is three beautiful children, who by some miracle are here today and have chosen me to be their mother. After is achieving hard earned baby milestones that make me want to simulatenously cry hysterically while doing a cartwheel. After is a marriage
that could have been broken by pain but has held its cracks together with industrial strength super glue of love and trust. After is knowing a happy ending may not be guaranteed but making the best of a situation and living here and now. I love After. I am so lucky to have After! On some lonely nights, I long for Before. But there are so many people out there jealous of my After.

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