On Taking A Girl With Down Syndrome To The Prom

Every spring, I see posts and articles like this one, about a handsome quarterback who invites a girl with special needs to be his date to the prom. Messages threads on multiple postings of this story, and others like it, always share a common theme:

“This boy restores my faith in humanity.”
“A true hero. His parents must be so proud.”
“His parents raised him right.”
“What a kind and wonderful thing this boy did to give her a night she will never forget.”

Yes, it is wonderful to see “typical” kids including kids with special needs in activities and it’s true that this boy…and the hundreds like him who ask someone with special needs to proms and homecomings…is clearly a kind and compassionate friend. This particular story isn’t just about the boy asking the girl on a date to a big event; it involves a friendship they have shared since fourth grade and the promise he made to her when they were ten-years-old that they would go to the prom together. So he gets multiple brownie points for being a man of his word. But I personally don’t think he’s a hero or that he extended an extraordinary act of kindness to a girl.

I think he’s a guy who wanted to ask a girl he likes and values to go to the prom with him. Period.

Why do we think he has done something heroic and selfless by asking his friend to share this right-of-passage, milestone moment with him? Why wouldn’t he want to ask someone who has been his friend for seven years to attend the big event? Maybe he asked her simply because he thought she would be the most fun date he could possibly have.

This boy might have been concerned that asking a “typical” girl to the prom – maybe the Homecoming Queen or a cheerleader – could mean that he’d spend the evening waiting on her to emerge from the bathroom, where she would spend most of the party gossiping with her friends. Or he might have worried that other potential dates would go to the dance, get totally wasted and puke all over his car and her expensive dress, which happens with alarming regularity at the high school parties in my community. Maybe he didn’t want to share his prom with a girl who would look at the other kids with judgement or critique the others girls’ dresses or hairdos. Why is it hard to believe that he chose to ask her – and she chose to say yes – because they like each other?

What if he asked her because he knew that she was the girl would treat the evening with the respect it deserves? What if he knew that she was the girl who would cherish the evening, say “yes” every time he asked her to dance and savor everything about being there with him? What if he knew that she was the girl who would make him feel like a prince if he treated her like a princess for one special evening?

To believe the notion that kids who are friends with kids who have special needs are somehow more noble or heroic than other teens is to think that there’s something wrong with being friends with kids who are “different.” He took her to the prom because he felt sorry for her or he took her because he wanted to make himself look good to others or he took her to the prom because no one else would.

Excuse me, but look at her…she’s gorgeous! Why can’t we imagine that he took her to the prom because he thinks she cute? And dare I say it…why is is hard to imagine that a typical teen might have a romantic interest in a teen with special needs? I loved the episode of Glee that featured Becky, the cheerleader with Down syndrome, and her typical boyfriend because when some of Becky’s friends questioned his motives for wanting to date her, he indignantly told them that (paraphrase) he liked her, plain and simple.

down syndrome prom date

What I see in these pictures is a beautiful young woman and a handsome young man who are about to have a great night. They look happy to be together and maybe a little anxious to dispense with the photo shoot and get on with the party. They look like they are proud to be chosen by each other for this special event.

When we make his choice to take her to the prom evidence of his extraordinary heroism, we diminish her. And we diminish all girls every time we tell them, in subtle and overt ways, that they are not complete unless they have a boyfriend, or unless their boyfriend gives them a corsage more elaborate than the other girls, or unless they get the most elaborate “promposal” of the year.

Hey, I’ve got a great idea! Let’s all agree to stop diminishing all girls – special needs or not…in any way…starting right now…Got it? Thanks!

So, he’s not a hero. But he is a handsome young fella who asked a beautiful gal to the prom. They are young people who have sustained a meaningful relationship since elementary school and who, I imagine, will continue to sustain their relationship for many years to come. And I bet that at their prom, they created memories they will both treasure for the rest of their lives.

And on a personal note, these two get my vote for the most adorable prom couple of the year!

Anna and Nathan, Prom 2015

Anna and Nathan, Prom 2015

 

Mastectomy, Pathology Results And A Rhetorical Question

So it’s been one week since my preventative double mastectomy with immediate reconstruction because I have the BRCA gene mutation and it hasn’t been that bad. If having my intestines resected multiple times through a 13″ incision straight down the middle of my abdomen was a 10 on the pain scale, I’d rate this about an 8. Lifting my arms to brush my hair is impossible and so is reaching for the coffee cups in the kitchen cabinets in the morning. But its getting easier with every passing hour and I’m reminded again of the amazing resilience of our bodies to heal and mend. I stayed in the hospital two nights, got home late Thursday afternoon and have been taking it slow since then.

The plastic surgeons at UAB were quite pleased with themselves and they should be. The nipple-sparing technique they employed was successful, the surgery lasted less than six hours, the implants went in with no problem and each time they removed the bandaging in the hospital, they oohed and ahhed about their work. “Textbook” is how they kept referring to my chest and “This is the outcome we wish we could achieve for every woman,” they said. Clearly, they know something I don’t know because right now when I look at my chest, I can’t imagine that these will ever look like natural breasts. They have assured me that it will take a few months for things to settle into place and that they can make tweaks and adjustments without any additional surgery.

Some people suggested to me that having a preventative mastectomy was the same as having cosmetic breast surgery but I can assure them that it is not. Every bit of tissue was stripped away from my chest – the doctor called it “skeletonizing” the breast – and the result looks like what you would imagine…lots of swelling and bruising, odd puckers and folds on the sides and under my arms and at this point, I can’t imagine ever wearing a low cut blouse or bathing suit again. Every time I look in the mirror, I tell myself that at my age, I shouldn’t care. But I do. And I imagine most women who have a mastectomy care, too.

This morning, I returned to UAB for my first post-op check up and was thrilled that the doctor removed the drain tubes, which has me feeling much better already. He gave me a chest band to wear, something he says will help the implants drop to a more natural position and he emphasized that there are other tools in his arsenal, like fat grafting, that can improve the final result. It’s a process, he reminded me.

Knowledge is power and timing is everything. Once I had the knowledge that I carried the BRCA gene mutation, I was able to make an informed decision that was right for me. Even though I knew the risks – an 87% chance of developing breast or ovarian cancer within six years – it turns out my risk was even greater than that. The pathology report showed that all the tissue in my right breast was clear and healthy but the tissue in my left breast contained “a large concentration of atypical, pre-cancerous cells.” The breast surgeon told me on the phone that if I hadn’t had a mastectomy, I would have developed malignant breast cancer in my left breast within the next 12 months. I am so glad to know this because I’m sure I would have wondered for the rest of my life if this surgery was necessary or not. And I’m thankful to my husband, doctors and friends who urged me to make this decision now. If I had waited much longer, it might have been too late.

Yesterday, I read Angelina Jolie’s New York Times Op-Ed about her cancer scare and the surgery she had to remove her ovaries. Like millions of women, I am grateful for her willingness to talk about women’s health issues in such an intimate way. As she points out, these decisions are highly personal and are different for each of us. Like her, I hate to think of the young women who haven’t had children yet who are faced with these tough choices and am overcome with relief that my daughter does not have this gene mutation. The decision to remove my ovaries back in October was a no-brainer for me, but I’ve already had two children and have already gone through menopause. Women who haven’t had children or are too young to be forced into menopause by the removal of their ovaries have much tougher choices to make than I did.

As I thought about Angelina and her decisions, a rhetorical thought came to me. Why aren’t there more female plastic surgeons? And if there were more women plastic surgeons, would there be any impact on cosmetic or reconstructive breast surgery? I posed my rhetorical question to my plastic surgeon today and he said, “That’s a very good question and yes, when men are crafting women’s breasts, they are doing this with a particular bias.”

We talked about how for decades cosmetic and reconstructive breast surgery has been done primarily by men and how the cosmetic procedures we have done to our breasts are somewhat responsible for the perceptions about what constitutes “great” breasts. We talked about our culture’s obsession with breasts and about the taboos that have long been held regarding breasts, from surgery to breastfeeding.

I wonder…does a female plastic surgeon have a different take on what a good outcome looks and feels like?

Would our culture’s perceptions about breasts shift – even slightly – if the majority of breast augmentation or reconstruction was done by women instead of by men?

Am I looking at the results of my surgery through a woman’s eyes or through a man’s?

Or do men and women see the same thing when they look at women’s bodies?

Please comment below if you have an opinion on my rhetorical question! And thank you all for your prayers and support!

What I Learned About Myself From A “Hater”

I learned four things about myself this past week. I’m 54 and thought I knew myself pretty well but self-awareness is a lifelong journey, I guess. I learned these things because I received an email from a “hater” who was angry with me. When I was still agonizing over the hater’s words three days later, I decided there must be a lesson in there somewhere, one that I was obviously not getting.

Abbey was our MC at Disney World

Abbey was our MC at Disney World

The first time I read the email, I was slightly amused. It was difficult to read because it was poorly written, full of grammatical mistakes and malapropisms. It was hard to take the words seriously because they didn’t make much sense. But the second time through, I zeroed in on the names I was being called…petty, manipulative, toxic. Ouch.

My first instinct was to feel embarrassed and angry…no one likes to be called names. I knew that these words were coming from someone who was disgruntled with me. I said to myself, “You can’t win them all” and “Everyone isn’t going to like you.” But even though people say nice things to me all the time, those insults kept resonating in my brain. I wondered why it mattered so much to me that one person said unflattering things about me.

I fretted and worried over those words. Am I petty, manipulative and toxic? Clearly, the hater thinks I am but do other people think of me that way? If I know for a fact that there are ten people who like and respect me, why do I care that there’s one who doesn’t? Why is it so easy to believe the haters and so hard to believe those who praise us? Am I the only person who gives too much credence to the words of haters and not enough credence to the words of supporters?

On their way to the stage!

On their way to the stage!

Whenever I receive negative feedback, I try to objectively decide if it has validity. If I decide the negatives are valid, then I decide whether they are something I can, or am willing, to change. And then I try to make appropriate changes to address them. Since I didn’t believe these insults are valid, I thought there was nothing I needed to change or correct. And yet, I couldn’t shake off those words. Then I had a “lightbulb” moment.

I realized that my reaction to the hater’s words prove that I’m not petty, toxic and manipulative (if I was any of those three things, I wouldn’t care what anyone said about me). But my reaction did highlight four other unflattering things: I always want to be right; I always want to have the last word; I am way too good at striking back with a vengeance when someone makes me mad or hurts me; and I can’t tolerate being rejected.

Project UP at the Downtown Disney Ampitheatre

Project UP at the Downtown Disney Ampitheatre

For three days, I had my finger poised over the “reply” button. I’m proud to say that I didn’t ever push it but boy, did I want to! I wanted to refute every single accusation and set the record straight so I could prove that I was right. I wanted to hit back, way below the belt. I played out imaginary conversations in my head, thinking of all the ways I could use my exceptional verbal skills to emotionally slash the hater. I was itching to have the final say.

I was indignant at the rejection…how dare they think these unkind things about me? Don’t they know that our local newspaper says I’m one of the 10 Most Influential People in town? Don’t they know that I am supposed to be universally revered, just because I’m me? Don’t they remember all the nice things I did for them, all the times I overlooked their mistakes and helped them out of messes? How dare that hater…did they not read the rulebook that says “Everyone must like Debra, all the time, no matter what?”

I can’t believe I just admitted thinking all of that. It is pretty scary inside my head sometimes.

I was so caught up in imagining retaliation that I didn’t acknowledge the lovely thank you note I got from someone and I didn’t reply to the beautiful Facebook comments on the pictures of JSAP’s triumphant performance at Disney World. I can’t get those three days back, but I can go forward with the intention of never repeating these mistakes if I can help it.

Anna's face says it all!

Anna’s face says it all!

When I need inspiration, all I have to do is look around me at the example the 503 children and adults with special needs in JSAP show me every day. They don’t waste time plotting revenge. They don’t hit below the belt. When they are wrong, they admit it. When they are rejected – which happens to them every single day – they turn to their friends and family for reassurance of their value and let the haters roll off their backs.

So, the next time I encounter a hater, I am going to try to remember these things:

I am not entitled to have everyone like me.

I’d rather be content than be right.

It will not make me feel better to have the last word because getting in one more round of hurt only prolongs a dispute, it never resolves one.

It doesn’t matter how old I am or how well I think I know myself…I will always have lessons to learn. I’d love to be able to say, “I’ve got this…I’ve learned it all” someday but I’m a work in progress. And I’ve got life’s best teachers to help me!

P.S. I realize that writing this post could be construed as a great way to get in the last word. My intention is to share what I learned about myself after reflecting on my reaction.

P.P.S. I’m also not fishing for compliments but I’d to love hear about a time when you’ve been in a similar situation and what you learned from it.

Project UP and Goofy at their Master Class

Project UP and Goofy at their Master Class

 

 

Finding The Magic Point Where Differences Don’t Matter

I know an extremely talented writer, Rebecca Moore, who writes a blog that I love….”What would the Wertis say?”…you can read it here. Rebecca’s blog posts are sometimes hilarious, always thought provoking and are written with a command of words that only truly gifted writers possess. She writes about disability, world travel and living abroad, life in the south. She writes about being a woman, being a wife and mother, using her own beautiful photography and clever graphics to engage her readers. I love reading her posts.

With her permission, I have reprinted one of her posts below. In an email chain between us about this post, Rebecca said this about what she’s observed in our programs:

If you put kids of differing abilities together in certain settings there is this kind of magic point at which the disabilities or normalcy are sort of irrelevant.

Wow. To me, Rebecca’s words a testament to the importance of what we’ve created in The Johnny Stallings Arts Program. We have found that “magic point” by bringing people together to participate in the arts. If you visit one of our classes, you will see kids and adults with all sorts of diagnoses together with typically developing peers and ability levels make no difference. Everyone learns from everyone else. Everyone encourages everyone else. Everyone is included equally.

I know you will enjoy “Someday” and hope you will subscribe to Rebecca’s blog! You can read the post in its original format here.

Someday

I started this post in headphones one morning because the older daughter was having a bout of perseverative vocalization, and it gets into your head, all the phrases she has collected, the classmates’ Dr. Who voices from eight years ago, bird sounds, the sounds from wherever, it’s there like all of the conversations of Earth that travel through space.

Also, my desk is in the hall and her father’s baseball podcasts can be hard to tune out. I normally use headphones if I am doing work with sound files that would disturb others, but people are not creating noise to communicate with me right now, they are in their own worlds, and I am in mine.

The cat jumps into my lap, reeking of Justin Bieber perfume, a Christmas gift the year that the older daughter liked the pop star. She realized at some point that he would never come here, that their love was only her love, lopsided, unrequited and doomed, yet she has rediscovered the perfume and emerged from her room in clouds of it. It’s what girls like to do, she informs me. How has the cat come to smell so strongly of the cheap, feminine scent of Someday? Just hugs? Are you sure?

I have taken notes about my daughter for years, notes to record the milestones of infancy, notes for teachers and therapists, family journal, notes for the book about one mother’s fierce journey, but then she has never asked me to tell her story and also it’s her story. Which is a question for anyone who sets out to write about anyone, even their own experiences in the context of living in the world with people, in the house with people: where does their story end and yours begin?

When the internet was young and we were just venturing out into the world of our daughter’s diagnosis we would stumble upon what my husband termed “angry autism dad” websites. These were before blogs as we know them today. They were an html-y collection of posts with links to government reports about concerns over thimerasol or links to university studies that hinted at possible causes that might, someday, lead to possible cures. Sometimes they were personal and recounted the small slights and injustices one encountered slogging through days filled with perplexing behavior from our children or insensitivity from adults from whom one would have expected more compassion. Fix this now, they demanded. Or, fund this study, stop the conspiracy. We were hoovering up information then. These men were the heroes of our strange planet. Vitamins, weighted vest, hair test, casein intolerance, leaky gut, PECS, environmental hazards, legal rights, insurance will cover six sessions in the course of a lifetime disability, read this, try that, ask about, a wonderful woman. Hope, hope, hope. Trust, trust, trust. Fight, fight, fight.

Diagnosis is, at first sight, a lonely planet. Some people and experiences are shooting away from you at the speed of light, but as some people pass from your life, others step in. I joined a listserv with more voices, more stories, less anger than the lone dad furiously accumulating research. Time passed.

Fast forward to the here and now. Our nieces are visiting for the week. We have put together a week of Cousin Camp activities. Last night we attended a kids yoga class at the place where the older daughter takes dance. There are many things you don’t envision for yourself as a parent, being a dance mom was one of them. The other girls at yoga are all friends from dance. Together, we represent a range of abilities, talents, chromosome counts, social skills, challenges and flexibility. I am the only adult participant, but this is a place of acceptance and my neck has been really stiff.

After doing tree pose, the instructor calls us all over. Picture a forest, she says. The trees are different sizes. They don’t stand perfectly still, they sway, some trees lean against other trees. She has us stand in a circle, one leg bent against the straight leg, arms outstretched to touch the fingertips of the people next to us. Being connected, she explains, gives each of us the strength we need to balance. And it works. We hold the pose together, in a circle, which gets us off our individual mats and, thinking or not thinking about the symbolism, experiencing it anyway.

I didn’t ask the girls later what they made of this, if they even thought about it at all. Did they assume they were a source of strength to the others or did it surprise them that it was easier to balance in the group? An experience like that is a gift they will unwrap someday, in their own time. If I were to follow the conventions of the fierce mother narrative, I might end this post with a quote of universal wisdom from Le Petit Prince, or conjure up a vision of the older daughter standing tall in the forest of life, but I think it is enough to leave you in a yoga studio contemplating your own pose.

Eight Ways People With Special Needs Are Better Than Me

As I prepared to post this, I thought about the “Joy in the Journey” that I’ve experienced because of my friends with special needs. If you love, “Welcome to Holland,” please watch our dance interpretation of Emily Perl Kingsley’s powerful words:

 

To My Friends With Special Needs:

I usually write about you but I decided it was time that I write to you instead. I want all 503 of you, whether you’re three or sixty-five, whether I’ve known you for a few months or for years, to know that I see the differences in us.

I see how we conduct ourselves and I find your way to be far superior to mine. I want you to know that I’m trying to be a better person by following your example. I’m making progress, little by little…day by day. When you’re as old – and as flawed – as I am, it takes a minute.

Here are just eight of the things that make you a better person than me and that I am trying to change:

1. The way you treat me is how I should treat other people. You accept me exactly as I am. You never judge me and when I let you down, you forgive me completely.  When I do something right, you celebrate and when I’m wrong, you tell me so…and then you always give me a second chance or a third chance or as many chances as I need.

The way I treat other people? Let’s just say I’ve got some work to do.

The Connection in Concert

The Connection in Concert

2. You don’t let negative emotions define your life. People who don’t know you the way I do may think that you are always happy or that you don’t experience the whole range of human emotions in the same way “normal” people do. But I know that you hurt, just like me. I know you feel frustration and disappointment, fear and anger, shame and guilt, heartbreak and bitterness. The difference between us is that you don’t let these negatives emotions dominate you.

I’m bogged down by years of emotional baggage. I avoid trying new things because I’m afraid to fail. I throw myself pity parties on a regular basis. I worry what others think of me. I sometimes do things just because my ego needs to be bolstered or because I want to win someone’s approval.

By contrast, you may be afraid to fail but you try anyway. You don’t let the opinions of others stop you from doing something you want to do. You are constantly underestimated by others, marginalized by our society and left out of things the rest of us take for granted. You don’t allow these injustices to get you down…you soldier on, usually with a smile on your face.

Now, I don’t mean to infantilize you or make light of what I know is your desire to be accepted. You feel every slight, you are aware of every stare and insult, and sometimes, it must be more than you can stand. But you choose to accept the challenges life has sent with grace and dignity. You could make the choice I make and allow negatives to inhibit you but thankfully, you don’t.

And you do not know how to feel sorry for yourself…that’s just not your style.

Project UP rehearsal

Project UP rehearsal

3. You willingly display your vulnerability. Some of you are plagued by doubts and worries or live with intense anxiety. You may not like to be touched or you may not be able to tolerate changes in your routine.

When I’m anxious or worried or overwhelmed, I retreat and wall myself off. I put up my defenses and resist anyone who tries to encourage me. “I’m fine,” I say to people who ask what’s wrong, or “Nothing,” I say to loved ones who wonder what’s bothering me.

Unlike me, you’re not ashamed to ask for help. You are willing to admit your insecurities. I spend my time trying to hide mine.

4. You understand that words are often the very thing that prevents us from really communicating with each other.

Some of you are not able to speak but you communicate much better than I do.

I talk all the time (mostly about myself in one form or another) and yet, my communication with people is often guarded and cynical. I am frequently mistrustful of the intentions of others.

For you, the absence of words means that you communicate with your eyes, your hands, your movements, your heart. You know that words are not a requisite for connecting with others.

5. You say what you mean and you mean what you say. When I first got to know you, I found it disarming that you are so utterly honest and so totally literal and transparent. You have no concept of insincerity or sarcasm or anything other than complete authenticity. You do not have the capacity to be disingenuous.

I am manipulative. I’m not afraid to throw my weight around or to use intimidation if I think its necessary. My own self-interest is of paramount importance to me. You don’t realize this about me – my duplicity and selfishness – and I hope you never do because I couldn’t stand for you to be disappointed in me.

6. You don’t understand recriminations or blame or fault-finding. You understand forgiveness.You often get angry, at yourself or at others or at the unfairness of life in general, but you express your anger and then…you’re over it.

I can get mad quicker and stay mad longer than anyone I know. I’m still holding onto grudges against people for perceived slights from decades ago.

You get your anger out and then you move on…quickly and without any fuss.

Nathan at NRG Dance Convention in Atlanta

Nathan at NRG Dance Convention in Atlanta

7. You do not define yourself by your success…or by your failures. When I accomplish something, I boast. Maybe not out loud, but I post on social media or I let that inner voice in my head tell me that I’m a big deal.  I’m too eager to tout my credentials, show off my resume, display my awards.

Nothing I accomplish comes close to the things I’ve seen you achieve – first steps when when doctors said you would never walk, words that therapists said you’d never speak, challenging dance combinations and songs that you master.

You are competitive and enjoy a good standing ovation or pat on the back. When you accomplish something, you celebrate…with gusto. But after the celebration is over, you just move on to the next challenge.

8. You understand that it’s better to happy than it is to be right. I hate to be wrong and I am reluctant to admit I don’t have all the answers. I want to have the last word.

You are perfectly comfortable saying, “I don’t know.” There are only three phrases you use as the “last word” and they are “I’m sorry” or “I forgive you” or “We disagree but I love you anyway.”

Samuel in "Christmas in the City"

Samuel in “Christmas in the City”

Thank you for teaching me these lessons. And for giving me as many chances as I need to get it right. Be patient with me…this is gonna take a while!

With all my love,

Debra

 

“Welcome to Holland”… There Is “Joy in the Journey”

Not too long after I created The Johnny Stallings Arts Program, someone directed me to a poem entitled “Welcome to Holland.” The authorized version of the poem is reprinted below, with permission from author Emily Perl Kingsley. I am told that soon after receiving a diagnosis for their child, whether it’s prenatally or at birth or later, parents are told about this poem. Ms. Kingsley has granted permission for the poem to be reprinted thousands times and it has been widely circulated around the world for 35 years.

Because I used to be a dancer, I imagined “Welcome to Holland,”as a dance from the first time I read it. For years, I’ve wanted to set this poem to music and use dance to interpret the powerful emotions it describes. This summer, I decided it was time.

I tracked down Ms. Kingsley and asked for her permission to set this poem to music and was excited and more than a little surprised to learn that no one had ever asked to do this before. One of Alan’s oldest friends, Monroe Jones, (a Grammy@ winning music producer) joined the project as the composer. We lined up sound and lighting engineers and a videographer. Monroe hired a Voice Over artist, Becki Devries, who has a child with special needs. Becki said, “This project was especially powerful for this momma’s heart.” Monroe entitled his original score, “Joy in the Journey.”

Rehearsals began in early December, with five kids with special needs and two typical teenagers cast in the piece. Choreography was created by Hayley Henderson, Emma Jenkins and Melissa Reynolds. As the rehearsals progressed, I knew they had created something special.

“Joy in the Journey” was performed on January 9 and 10 at Merrimack Hall’s Evening of Dance 2014. Audiences responded as expected…with resounding standing ovations and tears. Additional videography was done on Sunday, January 11 and the final result is posted below. I am so proud of Peyton Davis, Haleigh Briggs, Samuel Evers, Jonathan Lee, Robyn Dunn, Sophie Courson and Vivian Wells for their amazing performances.

 

I would never presume to know what its like to walk in the shoes of a parent who unexpectedly finds themselves in Holland but I have heard from hundreds of parents that “Welcome to Holland” puts words to the universal feelings they share and brought them great comfort. As parents accept that their parenting journey has led them into new territory, they tell me the fear and anger they experience are quickly replaced as they realize that Holland is indeed a lovely place to be. They tell me that “Welcome to Holland” is a treasured part of their parenting story.

I don’t have a child with special needs but my journey in parenting my son certainly led me to a land I never planned to visit. There are things about being a parent that all parents share; struggle and triumph, joy and sorrow, disappointment and success. Our children fundamentally change who we are as individuals, as they present us with challenges we didn’t anticipate and as they bring us happiness and fulfillment we can never fully grasp until we get to know the unique people our children are. Whether your child has special needs or not, the words of this poem will resonate in your heart.

I hope that someday, this video will become as widely circulated as the poem itself and will offer hope and encouragement to parents as they begin their journey into Holland. I hope it will bring attention to the success of our program of arts education for people with special needs. I hope that our interpretation of this beloved poem will help parents to see the joy in journey through the beautiful movements of our dancers.

Please share this video with your friends and family, using the hashtag #welcometoholland. Thank you for viewing.

 

Welcome To Holland
by Emily Perl Kingsley

©1987 by Emily Perl Kingsley. All rights reserved. Reprinted by permission of the author.
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

No, I’m Not Trying To Be Like Angelina Jolie

Latest information on my preventative mastectomy journey: I’ve now had three consultations at UAB and plans are moving forward. I won’t know anything further until I have a plastic surgery consult about reconstruction later this month. I expect that appointment to result in final preparations and for a surgical date to be set sometime in February or March. I will write about my journey again at that time.

I’m not sure what I thought would happen when I wrote about being positive for the BRCA gene mutation on The Huffington Post but I didn’t expect that over 500,000 people would read my words. I didn’t expect such an outpouring of support and encouragement from people all over the world. And I sure didn’t expect criticism from total strangers or dogmatic pronouncements about my “uninformed” decision.

The first negative comment was a surprise. “You must be trying to be like Angelina Jolie.” Really? Is this a joke?

Angelina Jolie pic

I assure you, I’m not having a preventative mastectomy because I’m trying to be like Angelina!

 

But comments in that same vein continued, along with messages saying “Please read the attached article,” one after another slamming the so-called  “Angelina Effect,” the name given to the increase in the number of women undergoing genetic testing after Mrs. Jolie’s New York Times op-ed, My Medical Choice.

I’ve been sent articles that say Mrs. Jolie’s decision to share her medical choice with the world was somehow connected to an under the table deal with the company who, at the time, owned the patent on the BRCA mutation test (the Supreme Court has since ruled against Myriad Pharmaceuticals and their attempt to patent gene mutations). In messages to me, people called her “stupid,” “foolish,” and “daft” and someone referenced the “questionable lifestyle choices that led to her BRCA mutation.” I’m no expert, but my understanding is there are hereditary mutations and acquired ones, with BRCA 1 and 2 being hereditary…if you have those gene mutations, you inherited them from one of your parents and they’ve been with you since your conception.

One person said in an email, “If Angelina ever actually gets cancer, it will be because she and Billy Bob drank each other’s blood and she used to shoot up heroin, not because she has some gene problem.” Really? Are these real people?

Obviously, I don’t know Angelina Jolie but I do know Billy Bob Thornton and he is one of the most down-to-earth, good ol’ Southern gentlemen I’ve ever met. He’s been a guest in our home and we’ve been to his.

Billy, Teddy Andreadis, Alan and friends around the piano at our house

Billy, Teddy Andreadis, Alan and friends around the piano at our house in 2010.

 

I am confident that he and “Angie” never drank each other’s blood but even if they did, show me the evidence that drinking blood causes cancer, please.

Besides the Angelina Jolie haters, I’ve heard from holistic medicine advocates, those who don’t trust the “medical establishment,” people who believe that all cancer is caused by lifestyle choices and can be prevented or cured by eating a certain herb or root or, I don’t know…clicking your heels together three times while throwing salt over your left shoulder?

People have told me that if I choose preventative mastectomy, I will be mutilating myself for no purpose, that I will be playing directly into the hands of some huge conspiracy between pharmaceutical companies and surgeons, that I will be cutting my life short by the surgery rather than extending it. One person actually wrote me this question: “Without breasts or ovaries, how would you be any different from a man?” Really?

None of these people offered up any credentials but I doubt they are doctors, researchers, genetic scientists or other experts. I’ve personally met with all of the above and while all of them have presented me with options, information about the importance of diet and lifestyle, statistics and concrete evidence, none of them have told me that by eating nothing but turmeric or curry or if I eliminate all dairy products from my diet, I will never get cancer and will live to be 110.

I’m confused about who these people are. The people I’ve heard from who have actually been affected by breast or ovarian cancer, either themselves or through a loved one, and those who are BRCA positive have offered a universal message…do your homework and then make the decision that is best for YOU. They have said things like, “here are resources you should know about” or “here’s what happened to me” or “this is what my wife decided to do” followed by “I hope this information helps you” and “you are not alone” and “thank you for sharing your struggle, as I’m feeling the same emotions.”

Dogmatism is defined by Webster’s as “the tendency to lay down principles as incontrovertibly true, without consideration of evidence or the opinions of others.” People who are dogmatic think just because they believe something, it’s so. The people who have questioned and criticized my choice are absolutely convinced that theirs is the right opinion. But we all know what they say about opinions.

Obviously, I opened myself up to receiving this negative input by writing publicly about my choice and the conflicting emotions I feel about it. I accept that and frankly, have had more than a few cathartic laughing spells as I’ve read the pontifications, proclamations and dire predictions from the people who are so convinced they are right. And maybe they are. I don’t know because I take a pragmatic view.

I chose to share my medical dilemma because I wanted to know if other women in the same position had ever felt the same way. I wanted to know what other women with the BRCA mutation chose to do. I wanted to know what options were available in other communities. I wrote about my feelings because even though I think I’m tough, I’m not as tough as I thought I was. I’ve lived for 28 years with Crohn’s disease and have endured my share of health issues but the thought of electively removing my breasts and the pragmatic reality that I have an enormous risk of developing breast cancer regardless of anything I may change about my lifestyle to prevent that from happening…well, frankly that knowledge brought me to my knees.

I am encouraged, inspired and humbled by the words of support from friends and strangers, by the sharing of personal medical decisions from women around the world, by invitations to join uplifting social media groups where vital information is shared by previvors and people already battling cancer. I might not have sought a third and fourth opinion if I hadn’t written that post and I definitely wouldn’t have been invited to have a two-hour meeting with one of the world’s leading genetic researchers (a post on what I learned in that visit is coming soon).  If the price for all of this insight and advice is a few haters, then I’m happy to pay that price.

As for me trying to “be like Angelina Jolie,” in my humble opinion she seems to be a pretty solid person who uses her resources to address issues that matter to her. That’s what I’m aspiring to do through my organization and The Johnny Stallings Arts Program so maybe I am trying to be like Angelina Jolie.

Next post will be about these folks, not about me!

Next post will be about these folks, not about me!

Which is exactly why the next post you read from me won’t be about my boobs or my medical decisions but will be about something much more important and way more interesting…it will be about the people with special needs who have changed my life.

Jonathan and Vivian are much more interesting than mastectomies!

Jonathan and Vivian are much more interesting than mastectomies!