To the Friends and Family I Can’t Make Small Talk With Anymore

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Dear Friends and Family,

I’m sorry for the miles between us and for not keeping in touch as I always say I will. I know the phone calls, texts and emails are getting fewer and further between. I don’t want us to grow apart, but our worlds seem so different these days. It’s often hard for me to find things to talk about with you, not to mention the time, when my mind is full of doctors’ appointments and diagnoses, IEP meetings and special education laws.

Small talk doesn’t really exist the same in my world. A simple “How are you?” is usually answered with a sigh followed by, “I’m just tired,” while a million things that need my attention immediately pop into the front of my mind. If I were to tell you how I’m really feeling, I’d probably burst into tears from the sheer exhaustion of just trying to keep up every day — and feeling like I’m failing at it too often.

To tell you the truth, sometimes I’m jealous of your free time and how some things are so easy for you. Like booking a babysitter on a Friday evening so you and your significant other can catch the latest movie I’d love to see. Or how you can send your kids to school each day without questioning that they’ll be happy and educated for the future of their dreams. That’s my dream, too; but for me, it’s not that way.

I notice you and your family through the filtered screen of Facebook. I hit “like” on your pictures, videos and status updates, thinking how happy you all seem, and it makes me smile. Then when the subject of those posts is your toddler reaching all the milestones my 10-year-old still hasn’t checked off the list, I admit there is an ache deep down inside of me. I think to myself, “Why does it have to be so hard for her?” and “Why not her?” There are no answers for my questions. It’s just the way it is for us.

I wouldn’t change my daughter; her differences are unique and beautiful in so many ways, but the world is not always kind and understanding of what she needs. Kids expect to lock eyes with her as they walk past, but instead find only lids with long lashes place asymmetrically on either side of her cute little button nose smushed on her face. Below it, her lips are equally asymmetrical with the right side always appearing puffy. And oh, that smile! It is contagious along with her giggle, which reminds me of my oldest nephew every time. And the pile of gorgeous bouncing curls atop her head are the envy of every woman walking who passes.

But her blindness, motor skills and sensory impairments keep her from running and playing alongside your children. We can’t walk into a bookstore and purchase a book she can read (with braille) or visit the museum down the street. These things and places that are part of your lives every day aren’t accessible to her. So she is too often left out of those things you probably take for granted — the activities and such that help you connect with the rest of the world. As much as she has helped open a whole new side of the world to me, the parts that she cannot access seem like a million miles away. That distant land is where you live, too.

I know your life’s not perfect either. It saddens me not to have the connections we once shared. And it’s not that I don’t want you to have all of these things — because I do. I wish you all the best and I love you so, but it’s a struggle for me every day and night to take a few steps toward having those things and providing for what my child needs now. Sometimes I feel like it’s just not fair. Other times I almost pity you for not having the experiences and new perspective on life. I’ve come to realize that our lives are different, but one is not any less valuable than the other. We’re leading different lives.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, 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 Share Your Story page for more about our submission guidelines.

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The Not-So-Typical Promise I Made in My Wedding Vows

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Wedding One month ago today, my partner Rich and I stood under a big tent during the loveliest late-summer rain storm and did a really wonderful thing: We got married.

Our wedding was beautiful, special, fun and silly — all the things we had hoped it would be during the months of planning. We stood under the alter in front of our friends and family, and I promised all the typical things you promise in your wedding vows — to love and support him, to take care of him when he’s sick, etc.

But there was one thing I added that wasn’t so typical: that I would take care of myself and my mental health, too.

It wasn’t surprising to Rich I included this in my vows. Mental health — both mine and his — has played an important role in our four-year-long relationship.

Rich and I started dating my junior year of college, about seven months after I was sexually assaulted. At this time, I hadn’t told anyone about my rape and was struggling greatly (and quietly) with PTSD and depression. I remember thinking I never would be able to say out loud what had happened to me.

And then one night when we were hanging out, shortly before we became “official,” I said it. I couldn’t believe it and certainly hadn’t planned it. It was like this part of me had been waiting for the right person to come along — someone who I absolutely knew wouldn’t judge or doubt me — and there he was.

My recovery has been a big part of our relationship. It’s taken a lot of work over the last few years to get to a place where I could walk down the aisle without that traumatic cloud hovering over me. And Rich has been there for every step of it — finding new therapists, upping my medicine dosage, learning new coping mechanisms to deal with my intense anxiety, dealing with terrible nightmares every single night.

We talk about my mental health as casually as we talk about what we’re having for dinner. I tell him when I’m having bad days (happy to say they’re pretty few and far between now), when something triggers me or when I need a little more support than usual.

We talk about his mental health, too. It’s not easy to be the spouse of a sexual assault survivor and he’s had to learn his own coping mechanisms. But we talk about it and we work through it. There’s absolutely no stigma in our relationship; that’s one of the things I love most about it.

So it made perfect sense for me to talk about my mental health in my vows. Here’s how it went:

“I vow to always make you coffee when I’m the first one up on Sunday. When you’re telling me a joke or about a bad day, I vow to listen to you — and actually listen, not just kind of listen but really I’m watching Netflix. I vow to take care of you when you’re sick. I vow to bug you to go to the dentist regularly, no matter how annoying it is. I vow to do my very best to cheer you up when you’re feeling down. And just like I promise to take care of you, I promise to take care of myself, too. I promise to go to my therapy appointments and take my medicine and write in my journal and practice self-care and love myself as much as you love me. I promise this because I know that the health of our relationship is only as strong as our individual health, so I vow to hold up my end of the bargain as best as I can.”

I’ve been doing really well for the last two years. I found a therapist I adore and my medicine is working like it should. But our marriage will (hopefully!) be long and I know there will be days when I’m not doing so great. There will be days when it’s easier to stay in bed than get up and write what I’m feeling in my journal. There will days when recovery seems out of reach and I want to throw in the towel.

But I’ll do my best to keep fighting. I’ll do it because I love my husband. And I’ll do it because I love myself, too.

Later, on our way to our Alaskan honeymoon, I asked Rich what his favorite part of the wedding was. He said it was the part about mental health in my vows.

I’m so lucky he’s my husband.

This post was originally featured on the Active Minds’ blog.

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Dad’s Fantastical Photos of Son With Down Syndrome Keep Getting Better

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When it comes to Wil Lawrence’s potential, the sky is the limit.

Alan Lawrence, an art director who lives in Paradise, Utah, with his wife and six kids, is the photographer behind the popular photo series “Wil Can Fly.” In April 2015, Lawrence released the series, featuring his then 18-month-old son, Wil, who has Down syndrome. For each photo, Lawrence used photoshop to insert Wil into a variety of scenes so it looks like he’s flying.

Now, in honor of October’s Down Syndrome Awareness Month, Lawrence has released new images of Wil for the series.

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Alan Lawrence

Lawrence wanted the photos to raise awareness about Down syndrome but also made it his goal to share some of the laughter and boundless joy his youngest son brings into his life.

“Wil has brought a new dimension to our family and has helped us to look past the worlds preconceived notions of normal,” Lawrence told The Mighty in an email. “We look forward to witnessing more of Wil’s unconditional love as he grows and we discover how to truly live life through him”
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Alan Lawrence

To Lawrence, the photo series represents Wil’s limitless potential and his ability to achieve anything.

“As I started looking at these pics, I just thought, I know he’s going to be able to do anything he puts his mind to,” Lawrence told The Mighty back in April. “He wanted to fly, and then there he was, flying. It’s an overarching message about all kids with Down syndrome. We feel like they can do anything they put their minds to.”

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Alan Lawrence

Lawrence has also completed a calendar of the “Wil Can Fly” photos, and half of all proceeds from it will benefit two Down syndrome charities, Reece’s Rainbow and Ruby’s Rainbow.

“We hope this calendar will help bring change and inclusion for people with Down Syndrome,” Lawrence told The Mighty. “These photos [will] hang in homes or offices, illustrating the joy and worth people with Down Syndrome have to offer the world.”

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Alan Lawrence

See more photos from “Wil Can Fly” below: 

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Alan Lawrence

To see more of Wil and the Lawrence family, check out their story here or follow Alan Lawrence on Instagram. To purchase a calendar or for more information, visit the  Lawrence’s blog or the “Wil Can Fly” website.

 

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In Powerful Moment, Cara Delevingne Gets Real About Depression

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Opening Ceremony And 'The Great Gatsby' Premiere - The 66th Annual Cannes Film Festival Cara Delevingne’s superstardom spans across genres. From high-fashion to summer Blockbusters, she’s a face we’ve been seeing a lot of lately.

When asked about her life before her modeling career at Friday’s Women in the World summit in London, the model and actor politely pushed away the question to quickly summarize what she was really there to say:

“In our culture, we are told if we’re beautiful, if we’re skinny, if we’re successful, famous, fit-in, if everyone loves us, that we’ll be happy. But that’s not entirely true,” she told actor Rupert Everett, interviewing her in the video below.

Delevingne said she started experiencing depression when she was 15. “I wanted the world to swallow me up,” she said.

After being taken out of school, going to therapy and starting antidepressants, she continued schooling until she eventually quit to start modeling at age 17. Although the young model’s rise to fame happened suddenly, and from the outside, seamlessly, she was still dealing with mental health issues that weren’t being addressed.

“[In my] external life, I couldn’t be luckier or more blessed,” the 23-year-old said in the interview. “But internal battles were going on. I also felt like I never deserved [the fame]. That I was living someone else’s dream.”

She also read aloud a poem she’d written last year, at a time she says she “wasn’t very happy”:

Who am I? Who am I trying to be? Not myself. Anyone but myself. Living in a fantasy to bury the reality. Making myself the mystery. A strong facade disguising the misery. Empty, but beyond the point of emptiness. Full to the brim of fake confidence. A guard that will never be broken, because it broke a long time ago. I’m hurting, but don’t tell anyone. No one needs to know. Don’t show or you failed. Always OK, always fine, always on show. The show must go on. It will never stop. The show must not go on. But I know it will. I give up. I give up giving up. I am lost. I don’t need to be saved, I need to be found.

When asked what messages Delevingne was planning on sending to her fans — and over 4 million Twitter followers — she said she wanted young girls to embrace themselves for who they are.

“Mental illness and depression is not something to be ashamed of,” she said. “And I wish at that time I had realized other people go through it, that I could talk to other people. You’re not alone, you’re not an alien. My message has always been to accept yourself no matter what.”

You can watch the full interview below. Delevingne starts reading her poem at 2:20: 

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To the Moms of Children With Autism Who Came Before Me

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As I painstakingly read through the dark history of autism in Steve Silberman’s book, “NeuroTribes” (love the book, hate the history), my heart aches for all the children who came before my son, Ryan. Children were subjected to atrocities by the Nazis, treated by “experts” or abandoned by their parents. Back then, parents had no understanding of the concept of “different, not less.”

And even though it was the children and adults living with autism who suffered, I believe the mothers who came before me suffered, too. Those mothers didn’t have Google, support groups or even a voice like mothers do today.

There were moments while reading the book where I felt enraged, sickened, devastated and at a loss for words. I wanted to grab the mothers who came before me by the shoulders and shake them. I wanted to shout, “Stand up for you child! Protect him! Make the experts hear you and see him.” But, of course, I can’t. Many of those mothers are long gone, as are their children.

If those mothers were able to hear my voice today, it would be a voice filled with sympathy and forgiveness. Of compassion and understanding. Of love and not judgment. Because I believe if the mothers who came before me had listened to the voice inside their heads and not the experts, the lives of their children would have looked very different.

So to the mothers who came before me, I want to say this:

I am sorry.

I am sorry your child was born in a time when differences of any kind were viewed as something wrong that needed to be fixed, hidden away or, worse, eliminated.

I am sorry that “fixing” your child often required you to go against your innate instinct to protect and love your child. That “experts” told you they knew what was “best” for your child and you did not.

I am sorry those “experts” often believed that locking your child away in an institution and performing awful treatments on them was considered “best” for him or her.

I am sorry your mother’s instinct was dismissed and you weren’t taken seriously by those holding your child’s future in their hands.

I am sorry you were often disregarded when it came to choices about your child, the child you loved, nurtured and protected since the moment you knew they were a part of you.

I am sorry you not only carried the weight of guilt but often the blame as well.

I am sorry you saw progress, joy, strength and love, but no one believed you. Rather than seeing less, you saw more, but your voice and your instinct was silenced.

I am sorry that once “treatment” began, you saw your child regress and were told, “That is to be expected,” and you felt powerless to intervene.

I am sorry you didn’t have access to the information mothers who came after you do.

I am sorry you lived every day wondering if you made the right choice, and the guilt of not knowing, of doubting, ate at your soul.

I am sorry your child failed to understand your decision was based on what you were told “was best” by everyone, everyone except the voice deep inside your heart.

I am sorry children and adults who were different like your child weren’t heard or seen beyond their differences.

I am sorry my apologies, my sympathy and my voice have come decades too late for you and your child.

I am sorry.

For the mothers with me now and for those who come after me, we must continue to advocate, educate and be heard, especially for the mothers who came before us. We are the voices of the past, the present and the future, so make yourselves heard.

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Follow this journey on The AWEnesty of Autism.

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Madeline Stuart and Rebekah Marine Are Our New Favorite Celebrity BFFs

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Last week, two of fashion’s favorite models with disabilities recently came together for a special photo shoot.

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Photo credit: Erica Nichols

Madeline Stuart, the world’s most famous model with Down syndrome, and Rebekah Marine, known as the “bionic model” because she was born without a right forearm and and wears a prothesis, got together on Oct. 6 in Laguna Beach, California.

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Photo credit: Erica Nichols

Both models recently made headlines for their participation in FTL Moda’s New York Fashion week show. They’re trailblazing a path for the representation of more diverse women in fashion.

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Photo credit: Erica Nichols

“When the girls walked at New York Fashion Week together, they both just connected really well as they share the same passion for inclusion,” Rosanne Stuart, Madeline’s mother, told The Mighty in an email. “They get along like they have been friends for years. They share a special bond.”

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Photo credit: Erica Nichols

“The photo shoot with Maddy was so much fun,” Marine told The Mighty in an email. “She is such a joy to be around and so full of energy. It was such an honor to work with her — she’s my inspiration.”

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Photo credit: Erica Nichols

“As both have a form of disability, they know what it feels like to be a little different and I think that once you experience that, you become more inclusive and a little more understanding,” Stuart said. “They just get each other and feel really comfortable.”

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Photo credit: Erica Nichols

“I want people to see me and think, ‘If she can do it, so can I,” Marine told The Mighty in an email. “I feared the camera for a greater portion of my life, and once I let go of the insecurities I had, that’s when I discovered happiness. We should never be afraid of pursuing our dreams. I hope that by working with Maddy, it will start a conversation about embracing models who may not fit the model stereotype. Fashion is for everyone.”

Check out more photos from the shoot below:

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“Madeline is such an inspiration and continues to make history by following her own career dreams as an international model,” said Sara Hart Weir, President of National Down Syndrome Society. “Stuart is taking the world by storm and helping us raising awareness about the value, acceptance and inclusion of people with Down syndrome through all aspects of society, and through her efforts, she is helping us advocate for all people with Down syndrome and their families.”

When not walking the catwalk, Madeline Stuart has been busy breaking down barriers and promoting inclusion all over the world. She serves as the ambassador of two charities — I can I will, an Australian charity promoting inclusion of children with special needs in schools, and the Inside outside Dance ensemble, which empowers people with special needs through dance. Go here or here to help support one of Madeline Stuart’s charities. 

Related: Behind the Scenes With the World’s Most Famous Model With Down Syndrome

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