To My Nonverbal Child, From Your Mother Who Waits

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Dear Conor,

With your soft baby voice, I heard you say, “Mama, Mama.” What I’d do to hear you say my name again. I remember you calling my name for a little while before all your words faded away. I don’t think anyone can ever prepare a mother for the realization that she may never hear her child’s voice. I had no idea I’d wait years for your voice to come back to me. I’m still waiting, and I always will be.

I dream so many nights that you can speak, and we talk all night about the things you’ve wanted to say over these past years. We stay up all night laughing, talking and hugging. We cry a little, but they’re happy tears. You tell me why sometimes you cry quietly to yourself, and why you laugh so happily when you hear “your” songs come on the radio. You tell me why you only like certain drinks and foods. You answer all the questions I’ve asked you over the years, because even when I thought you didn’t hear me, I realize now you were always listening.

I tell you every day, “Mommy loves Conor,” and sometimes you smile back. Your eyes beam as they look deeply into my own. At those moments, I know that no spoken words could ever speak as loudly as the way you look at me.

I don’t know why, but when your 5th birthday was coming up, it really hit me hard that it had been almost five years since I last heard your lovely voice. I just remember driving along the road, crying to myself and picturing the number five. When your words went away many years ago, I believed you’d be speaking when you turned 5. Your 5th birthday came and went, and your beautiful voice did not come with it. You had a lovely party, but I remember crying in the bathroom that day because I realized sometimes dreams may not come true.

But then you gave me that special smile — the one you give when you want to say, “Are you OK, Mommy?” It reminded me that we “talk” in our own special way. A lingering hug and a kiss upon your beautiful head reminds me how loved you feel and how much love you have to give each day.

Tonight and every night before I go to sleep, I make these wishes. I wish that you will always know how much I love you. I wish that the world will always be kind to you. And I wish that someday, if I my dreams ever do come true, I will hear your beautiful voice say, “Mama” just one more time.

But I love you and will love you forever, and I know you love me, too  whether your words come or not. You don’t ever have to say those words for me to know.

Follow this journey on The Little Puddins Blog.

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Doctors Said She Wouldn’t Be Like ‘Other Kids,’ but They Couldn’t Predict This

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Set as the wallpaper for my laptop is a split-screen shot of the two pictures below. I have them there to remind me that miracles do happen.

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If you look at these pictures, you might think they’re just some nice shots of someone climbing a mountain.

But there is so much more to the story.

The photos were taken this past July on our daughter Bree’s 18th birthday. We celebrated by undertaking a 19-plus-mile hike with over 4,800 feet of elevation gain. We would summit three of the tallest mountains in New York in the process.

On the way up the last mountain of the day — Mt. Marcy, New York’s highest peak — my daughter asked if she could race ahead while I took a little break to catch my breath. As she ran up the last portion of the summit, my husband took the picture on the left and then yelled, “Bree!”

My daughter turned around to face us, grinned as her dad took another picture and then continued her run up the mountain. At that point, my eyes filled with tears.

On that same day and at that exact time, 18 years before, I was undergoing an emergency caesarean section, not knowing if our daughter would live, and if she did, what sort of life she would have.

Early on in my pregnancy, it became clear there was something seriously wrong. After an ultrasound, we were given the diagnosis: gastroschisis with associative complications. Due to the large amount of intestine protruding from our daughter’s abdomen and the results from some other tests, my husband and I were told to expect the worst. We were told that if she survived her probable premature birth and corrective surgery, we shouldn’t expect her to be able to experience a good, functional life.

Termination was initially strongly recommended, but my husband and I chose to continue with the pregnancy, hoping, praying and believing for the best while preparing that we would likely have to face the worst.

Around the beginning of my seventh month of pregnancy, my daughter stopped growing. And then she stopped moving. She would need to be born via emergency caesarean section in order to have a fighting chance at surviving. I was terrified, trying to brace myself for the worst.

Finally, the surgery began. I can tell you with utter honesty that my daughter’s angry cries were the most beautiful sound I have ever heard in my life. She not only was born alive but was so full of life and fighting spirit that the doctor actually had to place her back on my incision as she attempted to wrest herself from his grasp.

Before my daughter was taken away for surgery, they let me kiss her sweet face, holding her so that her carefully wrapped mass of intestines, which covered her from her shoulders to her tiny knees, would not be jarred.

Late that night, we received a phone call from the surgeon. He said that he couldn’t explain it — it was a miracle. Somehow, he had gotten all of her intestines back into her tiny, premature abdomen. We were cautioned that even though she had beaten the odds so far, she would likely still require physical and occupational therapies. We were also cautioned she would likely exhibit compromised cognitive abilities in addition to her physical challenges and to not expect that she would be just like “other kids.”

The specialists were right in the fact that she would not be like “other kids,” but not for the reasons they might have thought.

My daughter ran — not walked, but ran first — 10 months after her premature birth.

Throughout her childhood, she not only won multiple physical fitness awards, but was always at the top of her class, excelling at everything she attempted.

Today, she is an award-winning artist who has created incredible charcoal and pencil sketches. She’s also an accomplished Irish step dancer and performed in Ireland this past year.

And on her 18th birthday, at the exact same time she was born, my daughter reached the summit of Mt. Marcy, having finished the last few hundred yards by running up the side of the mountain.

My daughter, who we had been told wouldn’t ever live a “normal” life if she survived at all, ran up the summit of the tallest mountain in New York.

And that’s why these pictures are set as my computer wallpaper, because they remind me that miracles do happen.

My daughter is living proof of that.

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How a Teen Inspired His Running Team to Honor My Child With Down Syndrome

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I signed my daughter, Gigi, up for a group called I Run 4 Michael. It’s a group where people who enjoy running are assigned to a buddy. Often this buddy can’t run due to a disease or disability. The idea of the program is to inspire, motivate and spread awareness. All participants are part of a private Facebook group where the runner will post pictures and notes of their runs a few times a week and tag their buddy or their buddy’s parent. Some runners and buddies have been together for a couple of years now. Some runners have traveled to other continents to meet their buddy in person. Some runners have lost their buddy as they have succumbed to their disease.

When we signed up, I had no idea we’d end up having such an amazing experience. Our buddy, Aurek, is from a small town in Indiana and is 14 years old. This surprised me since I never expected to get a young teenager as our runner. Aurek had signed up a while ago, but by the time Gigi was assigned to him, he was injured with a broken back. When he’s healthy, he runs for his middle school’s cross-country team, the Miners. Aurek was thrilled to finally get a buddy and learn more about her, but he was disappointed he couldn’t run for her. So he said in the meantime, he’d have his team run for Gigi. Shortly after that conversation, his coach emailed me. This is what he wrote:

Dear Tina,

My name is Tim from Linton, Indiana. Aurek has informed me of a notable gesture he has made towards Gigi. I just wanted to let you know that here at Linton Stockton we take pride in our school. I was happy to hear of what Aurek had planned to do. So as a head coach and a great supporter of Aurek, we as a team have decided to run for our two favorite people. This season has been dedicated to Aurek and Ms. Gigi. I will update you on our season as we progress. Also, I would love to send your whole family Miner t-shirts. I just need sizes and an address please. Our motto this year is “Finish on empty.” And I can guarantee we will FINISH ON EMPTY for Gigi. Thank you for taking the time to read this. I hope to hear from you soon.

I was speechless. Over the next few weeks, via pictures taken by Aurek’s mom, Becky, I saw these amazing kids run wearing Gigi’s name on their arms and ribbons on their chest for Down syndrome awareness.

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These kids are just adorable.

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They also made signs.

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At the last meet, Aurek finally got the OK from his doctor to run. And he placed second!

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Then towards the end of their season, Gigi received a package. It contained letters to Gigi written from each team member. We read every letter. They wrote about their likes, their families and many of the children mentioned God and scripture.

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Some even sent her their ribbons.

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One runner sent Gigi a stuffed turtle.

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The whole family also received Miners t-shirts.

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Aurek is such a great model for participating in an organization like I Run 4 Michael at only 14. We’re so happy he’s Gigi’s runner, and I am excited and confident that Aurek and Gigi’s relationship will last a long time. Thank you Aurek, Tim, Cara and Becky and all of the Linton Middle School cross-country team.

Follow this journey on Three With a Twist.

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Surreal Photos Show a Side of Depression We Don’t Often Get to See

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We know depression is often depicted with shades of gray and cloudy skies, but what does it look like during recovery?

To answer this question, HeadsUpGuys, a website and men’s mental health awareness project, teamed up with professional photographers to put an image and a face to depression recovery. They also encouraged others to take their own recovery photos using the hashtag #BetterStartsHere.

“You see images associated with depression and other mental health issues that are focused on what depression is, all the negative aspects,” Joshua Beharry, project coordinator for HeadUpGuys, told The Mighty. “We wanted to try to visualize the postive aspects of recovery and overcoming depression.”

They did, and the results are beautiful.

The surreal images below show a side of the depression journey we’d like to see more of — one that inspires hope and proves that recovery is possible.

Here are the images from their campaign: 

From Joel Robison, a conceptual photographer based out of British Columbia, Canada.

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source: HeadsUpGuys

“This is the first image in a series centred around times and places that we start to feel better. This is that first step out the door, into the world again.” – Joel Robison

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source: HeadsUpGuys

“This second #BetterStartsHere image was to show how one of the ways I know I’m feeling better is when I want to get out and run. Running is my ultimate therapy, it helps me meditate and burn off all the excess energy my brain holds when I’m not feeling 100 percent.” – Joel Robison

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source: HeadsUpGuys

“Feeling depressed or anxious always drains my creativity, the colors just seem dull, but when I’m better everything seems to come back to vibrant colors again.” – Joel Robison

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source: HeadsUpGuys

“This image shows that when we start to feel better we want to celebrate it, and we should. Each time we can stand up and say we’ve made it, is worth celebrating.” – Joel Robison

From Nathan Milner, fine art portrait photographer based out of Melbourne, Australia.

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source: HeadsUpGuys

“This image was created to visualize the sense of drowning and helplessness that guys with depression and anxiety experience. Yet, no matter how dark and overwhelming it can seem, we only need to reach out and help will find us. Together we can break the stigma surrounding depression in men, and show them that they’re not alone.” – Nathan Milner

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source: HeadsUpGuys

“I’ve always found the hardest person to ask for help is yourself. I created this image to show that once I learnt how to accept myself and enjoy my own company, I found I was able to be more self-aware and in a better state of mind.” – Nathan Milner

From William Patino, a professional landscape and travel photographer based out of Wollongong, Australia.

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source: HeadsUpGuys

“When it came to this project I really couldn’t ignore this photo. This one is a special image to me as it represents my journey with depression. Struggling with mental illness, I remember feeling so helpless, as if my world was surrounded by darkness. It was a heavy burden to carry, to wake up and feel on your shoulders everyday. Despite this there was a small fragment of hope that was just able to keep me going, no matter how much I wanted to give up I knew deep down there was a way out. This photo represents stepping out of darkness and in to new life, not giving up and knowing there is still hope.” – William Patino

From Adam Hague, a conceptual self portrait artist and photographer based out of Brunei and the United Kingdom.

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source: HeadsUpGuys

“This photo is about coming through the other side of depression, discovering love that your mind, body and soul deserves.” – Adam Hague

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source: HeadsUpGuys

“Dedicated to my support system, my family, my loved ones, my friends. I often find peace and positivity as soon as I take the first step of allowing myself to be happy. And realising the presence of people who have always been my rock during my storm.” – Adam Hague

From Robby Cavanaugh, a fine art photographer based out of Portland, Oregon.

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source: HeadsUpGuys

“The image is to show others what the daily struggle of depression feels like; a constant wind up to get through the day. Yet for me, being able to create is closure to that anxiety. Self expression is a great way to channel your negativities into a better life for yourself.” – Robby Cavanaugh

From Rob Woodcox, a surreal portrait and fine art photographer based out of Portland, Oregon.

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source: HeadsUpGuys

“I shot this during torrential rain in a cable car in Vietnam as part of the #BetterStartsHere campaign for HeadsUpGuys, to bring more awareness to depression. In a society dominated by self-reliance and independence, it can be hard to admit that sometimes we experience inner hurt. And so the voyage of self discovery continues, we must give ourselves space to do so! I have found that taking time to invest in myself through retreats to nature is one of the best cures for inner hurt.” – Rob Woodcox

From Seanen Middleton, a fine art and portrait photographer based out of Lake District, England.

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source: HeadsUpGuys

“On the rainy days, when everything is dark but you don’t mind because you love the way the rain sounds as it hits your window and the intricate patterns the droplets make as they travel down the glass. In the way the bitter autumn air bites your skin and makes you feel alive.” – Seanen Middleton

If you want to submit your own depression recovery photo, use the hashtag #BetterStartsHere.

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The Scarier Side of Invisible Illness

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Earlier this year, my friend Leah and I had a late-night conversation about the realities of being young and living with chronic illness. That turned into a free-verse poem we wrote together, which then turned into the idea for this video.

When we first published this, it was really intimidating. We usually try to keep things light. We tend to downplay how hard living with chronic illness can be. We like to end things on a positive note. But these words? These words are blunt. These words are stripped down. These words are real.

Keeping things light, finding the positive and focusing on gratitude? That’s still real, too. It’s not all one or the other, and part of how we cope with our chronic conditions is acknowledging both sides. Since we can’t expect anyone else to understand that scarier side unless we talk about it, that’s what we decided to do. We decided to share the faces and voices behind our words. And we decided to invite some of our friends and/or favorite chronic illness bloggers to help us.

A huge thank you to everyone who helped us out with this project! We know it was out of a lot of your comfort zones (it was out of our comfort zones, too!) so we so appreciate you taking the risk anyway.

And a huge thank you to all of you who took a few minutes to watch this video. You’re giving us a voice, and that is one of the most meaningful things you can do. That’s one of the most important ways you can help us. We didn’t create this video for pity; we simply just want to be heard. So thank you for listening.

Read the free-verse poem on Spoon Shares. Follow Catherine’s journey on Finding My Miracle.

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How I Find Little Blessings in My Mental Illnesses

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All my life I knew I was wired a little differently then most, but there were times I thought maybe I was just self-involved. I’ve heard many times, “It’s always about Joy.” What was wrong with me? Was I really that selfish?

I never knew I had a boatload of neurons firing off in the wrong direction.

At 15 years old, I started seeing my guidance counselor at school twice a week. Then, at 16, I started seeing a therapist whenever I could find a ride. It was there where I was diagnosed with social anxiety disorder, mild depression and a sensory processing disorder. Those sessions were my “awakening,” if you will — they made me feel like I wasn’t crazy. They made me believe having a heightened emotional barometer was really a blessing in disguise, and that being in your own head had its advantages.

Growing up, I secretly thought I had some level of ESP. I could sense what people were thinking, or guess how they’d react to certain situations. As a child, this concept was frightening. As an adult, however, I use my heightened sense of awareness to my advantage. I know within minutes of meeting someone if I can trust them. When I was leading a team of employees at my previous job, I was able to sense my coworkers’ emotions and help diffuse situations before they arose. While I have a hard time expressing my emotions, I hit the nail on the head with others.

As a creative person, I swear having anxiety is my best catalyst for creating great art. As a writer, I always second-guess myself. Will they like what I have to say? Will they disagree? Through my own self-loathing, I tend to turn to research and rewrites, which eventually yield some of my best work. My mind allows me to go to a place where I can be my own best and worst critic at the same time.

Because my anxiety means I’m constantly bracing myself for the worst-case scenario, I’ve become the best planner. It’s no wonder I went into event planning as a profession. If plans fall through, I’m there with a plan B and even a plan C.

Then, when my son Landon was born in 2007, little did I know we would have more than a typical mother-son bond. Shortly after his third birthday, he was diagnosed with a generalized anxiety disorder and sensory processing disorder. Because of my own challenges, I recognized early he was having difficulties in everyday situations. Although my husband is an amazing father, he has a hard time sensing the difference between Landon’s age-typical outburst and a minor anxiety attack.

My own mental health illness has been a blessing to my job as a mother, one I hold with the highest regard.

I understand how hard it can be for him to express himself. Finding the words and putting them together is not always as easy as it seems. While others have little to no patience, I do. I can walk into a room and know within a moment’s notice if it’s safe for Landon. Is it too crowded, too loud or too bright?

On the bad days I surely want to damn my anxiety away, but if I didn’t have those days I wouldn’t appreciate the blessings. The fear of intimacy, the challenge of articulating my feelings and even the staggering fear of mundane errands sometimes make me angry and frustrated. When the anger and frustration subsides, and it does, I’m proud my anxiety has made stronger and shaped me into who I am. My anxiety may challenge me, but not a day that goes by that I don’t challenge my anxiety.

Follow this journey on My Sensational Kid

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