I Took This Photo for My Best Friend’s Family. Then I Found Out Why.

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Dear breast cancer,

You’re a bully. You walk around like everyone is afraid of you. You think because you’re unpredictable everyone will cower in fear.

Sure, you’re scary now, but your days are numbered. There are teams of researchers across the world funneling thousands of hours and millions of dollars into curing you. What will you be then?

You really can be a jerk sometimes. Late in December, my best friend’s mother asked if I would take family portraits for them. Naturally, I agreed. Only the next month, on January 7, did I learn why I’d taken those pictures. My best friend asked me and one of our other friends to meet him for dinner. I drove over, confused as to why he would call us, seemingly on a whim, to dinner on a school night.

His mother had you, breast cancer.

Photo for The Mighty

Triple-negative. She started treatment shortly after I took those family portraits. Those pictures were for the bad times and the worst case.

She lost her hair. So what? Now she’s joined me in wearing baseball hats. She got to pick out a wig in her favorite hairstyle. Breast cancer, you lose. She’s fighting with every ounce of her immense strength.

She refuses to let me help her out without paying me — believe me, I’ve tried. She agreed to drive her son and me to a leadership conference all the way in central Oklahoma. Just the other day, I helped her ready her backyard for spring. She was before and remains today one of the strongest and most inspiring people I know.

Nothing will get her down, not even you, breast cancer. She will persevere, and you will be banished from her body. It’s a lose-lose situation for you.

There are good days and bad days for everyone involved. There are noticeable downswings in my best friend’s mood. Those are the days I redouble my efforts to help. There are certainly days when my friend’s mother feels down for the count. And there should be because aggressive treatments can be hard to take. But she always gets back up, unbroken by your petty attempts.

You must have long arms, breast cancer, because you seem to impact everyone you come into contact with. But not a single person will be beat. Everyone remains strong, even through the dark days. My friend’s mom does not fight alone. She’s surrounded by a loving and caring family, a tight-knit group of friends and a supportive community. We will not be beaten.

What are you anyways? You’re an accident of gene mutation. Something gets messed up, and then you arrive. You’re a programming error, and it’s only a matter of time until that programming is debugged. Breast cancer, you’re an insidious creature instilling fear into all sorts of people. That’s just not fair, and it will not be tolerated any longer.

My friend’s mom will beat you. People as a whole will beat you. Your days without a cure are numbered, so enjoy them while you can. You’re going down, breast cancer.

Sincerely,

Stu Mair

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? 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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This Mom Is Creating a Documentary That Asks What the Future Means for Teens With Autism

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Melissa Collins-Porter is a filmmaker and film studies professor in La Costa, California. Her son, Liam, is a 14-year-old high school student with autism. Liam lives a fulfilling life at home with his parents. But what will happen when he turns 18 and finishes high school?

Collins-Porter set out to to help answer the question on her and countless other parents’ minds — what comes next for young people with autism once they reach adulthood? She teamed up with Craig Young, a local filmmaker, to develop “Aging Out,” a documentary that explores new ways young adults can lead productive lives after graduating from high school or outgrowing their support networks, U-T San Diego reported. The film will examine what the high rate of autism diagnoses in California and limited state social services means for families living with autism. It will also feature interviews with teens with autism who are nearing their 18th birthdays, parents, social workers, advocates and caregivers.

The Mighty had the chance to reach out to Collins-Porter about her project in an email interview. We asked her about the story behind “Aging Out,” what she hopes the film will accomplish and what we can do now to help adults with autism lead meaningful lives once they reach adulthood. Take a look:

1. Can you describe the moment you first knew you wanted to make this documentary?

It was more like an evolution than a moment. I knew since my son was diagnosed that I wanted to make a documentary about autism; I just wasn’t sure what the focus would be. When my son reached his teens, I started to think a lot about what adulthood would look like for him and all of his peers with autism. Stories about the issue were starting to appear in the media as this population ages, and I realized the time was right.

2. What do you hope this film will accomplish? How will it differ from other films about autism?

We hope to ask questions, raise awareness and generate hope. Our film will be different from other autism films in a couple of ways. First, we plan to focus on the community, not the disorder itself. We approach this issue with a challenge to society — how do we support and encourage adults with autism to live meaningful lives in our communities? What are we doing well, what are we doing not so well and what can we do better?

Secondly, we plan to approach adults with autism as people who live with some challenges — not patients who need to be cured or fixed. We hope the stories we tell will empower adults with autism to design the kinds of lives they want to live and ask for the help they need to do that.

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Melissa Collins-Porter with her son, Liam.

3. What do you hope other affected by autism will take away from this film?

We hope families living with autism will be inspired to take the individual needs of their child or adult into consideration and work with him or her to make decisions about what they need to have fulfilling lives. And then to maybe let go… at least a little bit.

4. What are some steps people can take to help young adults with autism succeed?

Presume competence! Don’t make assumptions about what people with disabilities are capable of based on their communication, social interaction, appearance or diagnosis. They have been judged their whole lives by criteria that never applied to them. They have intelligence, skills and abilities that often don’t show up on standardized tests.

Also, be direct. In my experience, most children and adults with autism appreciate direct speech and clear expectations.

To learn more about this project, check out the “Aging Out” Kickstarter page, which wraps up fundraising on March 19 at 4:00 p.m. PST. The Cynthia Norall Foundation is matching donations through the end of the campaign. If the campaign is successful, Collins-Porter and Young will use the money raised to create the documentary trailer during the summer of 2015. They plan to shoot the film throughout 2016 with an anticipated release date in May 2017.

*Feature image from the “Aging Out” Kickstarter page video.

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When the Special Needs Journey Ends

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cp6 The lanky girl with the top hat and glasses slides up to the podium. Forgetting to adjust the microphone, she leans down and loudly exclaims, “Do you know which president’s real name is Thomas? That’s right, it’s Woodrooooooooow Wilson!”

The statement sounds more like the introduction for a Chicago Bulls basketball player than a fourth grader giving a speech about the 28th president of the United States.

The audience giggles, and my friend whispers to me, “She’s a riot!”

I smile big and roll my eyes as I watch my daughter yuk it up in front of roughly 50 parents and her classmates. Of the 30 speeches this morning, my daughter is the only one to perform it like a stand-up routine.

The audience chuckles again as she tells them Wilson accomplished a little more than “just” being a father to three girls. As it often happens when I watch her, a slew of other phrases pops into my head:

She will most likely have learning problems like dyslexia.”

“We are hopeful she may live a normal life.”

“You need to prepare yourself for a long road ahead.”

These aren’t phrases out of a carefully written speech; instead, they’re prognoses from medical experts regarding my daughter’s significant developmental delays.

I knew something was wrong at the first-year mark. She did not possess any words and seemed extremely high-strung and frustrated. She walked on the balls of her feet. I watched her play with toys in odd ways, and although she bonded with her family, she was completely uninterested in other children.

Doctors could not pinpoint what was wrong with her, and we received a slew of misdiagnoses: apraxia, dyspraxia, Sensory Processing Disorder, PPD-NOS, Asperger syndrome. The list was long, yet nothing seemed to fit.

Over the next four years, my daughter participated in a range of therapies, including speech, occupational and physical therapy, social skills and more. We saw progress, but our lead therapist felt she would most likely need an aide when she started kindergarten.

“Whatever it takes,” I responded, but I felt dejected and helpless, like we were on a hamster wheel running to nowhere.

What is it like to raise a child with special needs? To paraphrase “Sesame Street” writer Emily Kingsley, mom to a son with Down Syndrome, it is something like this:

When you’re going to have a baby, it’s like planning a fabulous vacation to Italy. You buy guidebooks and make plans… It’s all very exciting.

After months of anticipation, the day finally arrives… but when the plane lands, the stewardess says,“Welcome to Holland.”

“Holland? What do you mean Holland? I signed up for Italy.”

But there’s been a change in the flight plan, and Holland it is. 

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place. It’s just a different place.

She was right. I was fine not going to Italy, but I needed to know where we were in my daughter’s journey so I didn’t feel so in the dark.

When she was almost 5, we saw an orthopedist to assess her legs since therapy was not impacting her toe walking. As I sat across from him with tears streaming down my face, he explained that our daughter had a minor case of cerebral palsy. She most likely experienced trauma in the womb that caused a neurological issue forcing her lower leg muscles to function improperly and interrupting communication with the brain to other regions. Combined with extremely tight tendons, this caused her to be a constant, extreme toe walker and impacted her ability to process information.

While the news was a shock, I was relieved at the same time. The peg finally fit in the hole. CP often causes issues with speech and motor skills, but it was non-progressive, which is why we’re seeing her developmental skills improve.

We decided to pursue a surgical option to treat her toe-walking, as it had the highest success rate. The doctor would cut her Achilles tendons, elongate and then re-attach them to allow her to walk on her flat feet without pain. It was bittersweet when he told us she had one of the most severe cases he’d ever seen but felt the surgery was successful.

Immediately after, she began to flourish in leaps and bounds. With a more centered core, it was easier to find words and process information. Her spatial awareness improved, and her sensory needs decreased. She expressed a desire to learn to read. She became more confident and easier to deal with since she could now communicate her wants and needs.

On her first day of kindergarten, she walked through the door on her flat feet and without an aide. Although she was still behind her peers and required support in a few areas, she surpassed all expectations.

The rush of clapping brings me back to the library, and I see her braces-filled smile as she nods to the crowd, acknowledging the applause.

Five years after her surgery, nine years after our first appointment to assess her development, my daughter no longer qualifies for what the state would deem “special needs.” She reads at an above-average level and excels at math. Our time allocated for therapy is used for horseback lessons and theater class. Happiness and kindness have replaced frustration when I describe her attitude.

Sometimes it’s hard to let go of the past, the life I lived as a special needs parent. It’s hard not to worry each time she doesn’t understand a piece of homework or struggles to find the right words. It’s hard not to obsess over any small idiosyncrasy or awkwardness. It’s difficult to accept that her differences have now become her strengths. It’s unusual for a child with severe developmental delays to improve so much from a surgery or even years of therapies.

I wish my daughter’s beginning was less complicated, but I’m thankful she opened my eyes to the beauty of different. This “trip” taught me to celebrate my daughter for who she is and not worry as much about what she has.

My journey with her hasn’t changed. I will still advocate on her behalf and ensure she has the resources to succeed in this life; however, I’m slowly accepting that our path heads in a different direction.

Maybe we’ll get to Italy, but if not, I’ll just enjoy the trip traveling beside her.

Author note: Special needs parenting is hard. In no way do I want to portray that most kids can outgrow their developmental delays or diagnoses. This is only a reflective essay regarding my experience with my daughter.

This post originally appeared on Playdates on Fridays.

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Why I Bring My Daughter a Plain, Unfrosted Cupcake to Birthday Parties

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544404_4456638873697_1765936352_n I know other moms give me a sideways stare when I bring my daughter a plain (unfrosted) cupcake to another child’s birthday party. They think I’m some health nut, but I promise you, I would change it if I could, but I can’t.

My daughter has food allergies, and there’s nothing we can do about it. We simply accept it. But what’s more amazing than anything is that at just 3 years old, my daughter accepts it too. Lately when she notices she’s eating something different, she points to the other food and says, “That will make me ‘blech.’ Then she makes a lovely vomiting noise. Yes, honey, it will; it will give you horrible hives and projectile bodily fluids every few minutes for hours on end. Let’s stay away from it.

From the day she was born we knew something was not right with Melina. She just had so many issues.   Doctor after doctor said I was being a hypersensitive first-time mom. One doctor did agree that she was having an allergic reaction to something, but his exact words were, “We will never know what it is though.”   My thought was, “Wanna bet?!”

When she was around 8 or 9 months old, we finally figured it out; she was allergic to dairy. Not lactose intolerant — allergic. We thought how horrible for her, but at least we know what’s wrong. Within months we discovered she was also allergic to soy, eggs, chocolate and fish.

Imagine? No dairy, soy or eggs. Those are the big three. Almost everything has one of those three. It eliminates processed foods of almost any kind. Nearly everything in our house is made from scratch (ever try and make egg-free mayo? It’s an entertaining experiment in texture). There are always two pans on the stove or two dishes in the oven — one with our food and the one with the “special” food. The food made to look similar to ours so she doesn’t feel deprived. Most times we just try and eat something she can have.

As she got older her reactions got worse, and we ordered our first EpiPen, terrified that her allergic reaction was becoming anaphylactic. So far, we haven’t had to use them, but they are there just in case.

At times I felt sorry for my daughter because she might never know the joys of white cake with pink buttercream frosting, but then I think about how we’ve been so blessed with our baby girl. She’s happy and full of life. She laughs at everything and revels in her daddy’s tickles. Who cares if she can’t eat regular pizza but rather a homemade one with vegan, soy-free cheese? It seems like a silly thing to be bothered by when you think about it in those terms.

Are her allergies annoying? Absolutely. But are they really worth whining about? As long as she’s healthy, absolutely not. I wouldn’t change a thing about our little princess because if watching what she eats is all it takes to keep her happy and healthy, I will do that with a smile on my face.

And truthfully, there are even some good food days. Like the one when her godmother discovered that soy-free, dairy-free “butter” sticks actually whip up just like regular butter. Melina will know the joys of pink “princess” buttercream frosting over white (vegan) cake. On those days we know it won’t always be so difficult, and we’re truly lucky to have what really could be considered “minor” issues.

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Why I Love Cerebral Palsy

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cp4 As a young mother and bride still in my tender teens, cerebral palsy came into our lives loud, demanding and uninvited. I didn’t have a clue as to what was happening, what would happen or what to do. Cerebral palsy became one of my best teachers.

I was such a shy young woman who loved her first born child with everything she had, so cerebral palsy was a guide I used to help me find my voice, my strength, my creativity, my purpose and my own sense of self-acceptance. The countless stories I could share would have us all laughing, crying and experiencing every range of emotion we have within us, but the truth of the matter is, every challenge taught me something and most important, it taught me about the power of love.

I never thought about thanking cerebral palsy in this way because it’s hard to imagine CP from a perspective of gratitude. I’m not sure what my life experiences would have been like if my son did not have cerebral palsy. I can’t imagine where I would be or what I would be doing, but I’m thankful for my life, and I’m thankful for all that cerebral palsy has helped me realize. We’re all human. We all have challenges. We all desire acceptance, love, respect and the opportunity to pursue our dreams no matter our color, race, gender, ability or disability.

Diversity is the fabric of this world. And cerebral palsy is just another cloth that adds to the many layers, so thank you, cerebral palsy. You’ve been an awesome teacher.

My son, Ajani “AJ” Murray, is 32 and an actor, public speaker and an advocate for justice. Check him out in a documentary featuring him:

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We’ve Already Picked Our Favorite ‘Dancing With the Stars’ Contestant This Season

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Army combat veteran Noah Galloway lost both his left arm and left leg while serving in Iraq, but that hasn’t stopped him from achieving extraordinary physical feats. Since returning home, he’s made it a point to challenge himself as much as he can. His current project? Mastering ballroom dancing. And gauging by his performance on last night’s season premier of “Dancing With the Stars,” he’s not far off.

Galloway and his partner, professional dancer Sharna Burgess, performed a cha cha routine that received a standing ovation from the audience and ample praise from the judges, AOL News reported.

“It was profound,”Carrie Ann Inaba, one of the judges, says after their performance, according to AOL News. “And you’re broadening my scope of what dance looks like.”

Hear more about Galloway’s story in the video below, and see his and Burgess’s dance routine at 1:30. 

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