When My Daughter Could No Longer Ignore the Whispers About Her Alopecia

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A legacy is something handed down from one generation to the next. When you think of leaving behind a legacy what comes to mind? A business? Money? Property? Or perhaps a name?

What legacy do you intend on leaving behind? How will it affect your children or grandchildren? How will it change the world? Do you have a legacy? Do you worry yourself with such thoughts?

I am currently pregnant with my third child, and my husband and I are already thinking about the next. We decided we wanted a large family. Our first child was diagnosed with Down syndrome at birth and later came to lose all the hair on her body. She has now been diagnosed with a severe form of alopecia.

Alopecia is an autoimmune disease where your immune system perceives your hair follicles as foreign. The body then attacks and kills the hair follicles. My first concern was, could this be threatening to her health?

There are typically no serious health problems related to this condition, which is a relief to any parent. Somehow I was so celebratory in that fact I forgot about any future confidence issues that may arise for her. She is put together perfectly in my eyes. She is a beautiful, happy soul, and up until recently, she rocked her bald head with a fierce attitude. As Airiana grows into more self-awareness, it is becoming harder to ignore whispers and stares.

I listen to people apologize for my daughter on a daily basis. People still apologize even when they find out she does not have cancer. I explain she is healthy and only has alopecia or Down syndrome, yet the response is still, “Oh, I am so sorry.” Is it just me, or do other parents get offended when someone apologizes for your child having special needs?

My husband called me this morning with a heart-wrenching story. He began by telling me how wonderful his morning was with Airiana. He took her on a daddy-daughter breakfast date. Spending quality time with her dad always puts an extra pep in her step. They arrived at school, and he said she happily greeted a group of girls passing in the hall.

He then proceeded to tell me that the girls ignored Airiana, and as they got farther away he heard one whisper, “See, that is the girl with no hair.” He then told me he looked down at Airiana and her shoulders dropped, followed by her head. He saw her peppy step disappear, and she sank into sadness.

These types of situations happen to Airiana weekly. Today crushed my heart more than any other because we just celebrated Ariana’s 10th birthday, and with this birthday has come so much maturity. She is a responsible big sister, a true friend, the best hugger on earth, but now it seems she feels the need to be more.

She has requested a wig this past year, so we are in the process of going through wigs for children. I have watched my fierce, bald little girl turn into a fierce young lady who would like to be a redhead.

I know our story does not end with a wig. The students who are familiar and accepting of Airiana will now have questions about how she suddenly has hair. Curious children will more than likely talk about her wig. Dozens of strangers are still likely to approach us.

Starting today, these interactions will have a different outcome. I plan to make an elementary-level pamphlet. This brochure will be full of information and pictures. I will give them to curious parents so they may share it with their children. I will give them to children so that they may share with their friends. I will offer them to teachers in hopes that they educate their classes.

I also plan to raise money in order to make these pamphlets available to other parents. The idea would be that you could request a number of pamphlets from IAM21 and pass them out if you ever find yourself in this situation. The brochures will not be specific to Down syndrome or alopecia. It will be for the special needs community as a whole. We advocate for everyone.

Schools spend time during the year educating children on drug awareness and pushing them to do fundraisers. Do schools ever take the time to educate children on the diversity of special needs? I would like to see a special needs education week, just as I see a drugs awareness week.

What legacy do I want to leave behind for my kids? Land can be sold and money spent, but you can never take away character. My children and their children will have a profound respect for diversity amongst humanity. I hope to inspire them to hunger for knowledge in the unknown and feed their curiosity by asking questions. I hope my great-grandchildren will know about diversity and how beautiful it makes the world.

Again, I ask: What legacy are you leaving behind for your children?

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Airiana (left) and her friend.

A version of this post first appeared on IAM21.

The Mighty is asking the following: Tell us about a time someone in your community went above and beyond (or did the exact opposite) for you or your loved one with special needs. 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 Submit a Story page for more about our submission guidelines.

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BuzzFeed Employee Makes Intimate Video About Losing Her Hair

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In the last year, BuzzFeed has produced a wide range of video content — from its popular weekly series where a staffer whines about stuff, to celebrity interviews, to cooking tutorials and more.

The video below is different. In it, staffer Becky Harris, who appears in a lot of BuzzFeed videos, gives an intimate look at her life with alopecia areata, an autoimmune skin disease that results in the loss of hair.

Harris was diagnosed when she was 17. For a long time, she tried to hide her bald spots with different hairstyles and took cortisone shots to slow her hair loss. In the clip below, she decides to shave her head.

“I wish I had felt this comfortable when I was younger,” she says after the cut, “but sometimes when you don’t know what other people are going through, it can be tough to be OK with it.”

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Doctors Told This Couple Their Time Together Was Limited. They Responded in the Most Beautiful Way.

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When I got on the phone with Alicia and Drew Booker, I was expecting a somber conversation.

With Drew battling a terminal illness and Alicia facing the possibility of losing him, it was bound to be a sob-fest. What I wasn’t prepared for was the laughter and joy I would share with them on our hour-long chat.

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When Alicia first saw Drew in a prayer circle at her church more than ten years ago, she was drawn to him and instantly wanted to know more about him. A few months later, the two were married.

They’d only been dating for a week when Drew proposed outside the Franklin Cinema in Franklin, Tennessee, where they’d had their first date. The marquee outside the theater read, “Will you marry me, Alicia?” On April 22nd, 2005 they were wed in Steamboat Springs, Colorado, by Drew’s father, a pastor who had met the bride mere hours before officiating the wedding. The two have been inseparable ever since.

But, just two months after the wedding, Drew became ill. He already lived with juvenile diabetes and an autoimmune condition called Alopecia Areata, but now he was having seizures. Doctors diagnosed him with epilepsy and he was having multiple grand mal seizures every month — a type of seizure where you lose consciousness and suffer violent muscle contractions, according to the Mayo Clinic.

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“When he first had one, I thought he had died,” Alicia told The Mighty. “It was the worst experience of my life. It’s traumatic.”

This was just the first of many grueling hospital visits and diagnoses to come for the couple. Drew’s doctors discovered a new condition he had nearly every year — Celiac disease, IgA immune deficiency and Autonomic Autoimmune Ganglionopathy, which is a blood cell process disorder that Drew is to date the youngest person ever diagnosed with it. Most recently Drew found out he also has a condition called Buds-Chiari syndrome.

Buds-Chiari syndrome is also known as Hepatic vein obstruction. It’s a blockage of the hepatic vein, which carries blood away from the liver, according to the National Library of Medicine. Drew’s blockage was caused by a blood clot, and he’s currently in stage IV liver failure. Normally a liver transplant would be an option, but because of his previous autoimmune conditions, Drew is not a candidate for liver transplant surgery.

His liver has such extensive damage that it should not still be working, but his currently is. Doctors have given him a vague timeline of months to years to live.

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“If I present all the conditions I suffer from on paper, doctors say, ‘This guy has months to live,’” Drew told The Mighty. “But when they give me a physical they just don’t know.”

Facing an uncertain amount of time left together, the Bookers decided to work on their “True Love Bucket List.” On their website, they’ve both compiled lists of things they want to do for and with each other before it’s too late. Alicia’s list includes taking a pottery class together, getting a tattoo together and kissing on top of the Empire State Building. Drew’s includes kissing Alicia under the Eiffel Tower, giving her at least 100 more foot, hand and back rubs, and a cross-country drive together.

“The True Love Bucket List was created by us to inspire others to love each other more,” Alicia told The Mighty. “It’s not a sad story, it’s a beautiful story that we are sharing with others.”

The list only went online two weeks ago, but already the couple can cross one thing off — they recently went to Harry Potter World in the Universal Orlando Resort in Orlando, Florida.

Despite everything they’ve been through in the last ten years, the Bookers are some of the most cheerful people I’ve had the pleasure of conversing with. The two were laughing and finishing each other’s sentences while recounting their story for me, even interrupting one another for a good-natured joke.

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Drew genuinely means it when he tells me that it’s all been fun — even the dark times — because he has had Alicia by his side.

“When I look back at the last ten years I don’t see a life of suffering, I only see good and happy times,” he told The Mighty. “I feel like I can sit through the hardest things, physical and emotional, because I have her. That fact is enough to sustain me through anything.”

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“I don’t see Andrew as a sick person,” Alicia told The Mighty.  “I love him, I love his heart, I love his mind.”

When Alicia briefly left the conversation and Drew had me all to himself, he couldn’t wait to tell me everything he loves about his magnificent wife. But it’s this little detail that stuck out to me:

He explained that now when they hug she has to hold him up. When she does this, he rests his head on her shoulder and she unknowingly lets out a little sigh. Drew cherishes that noise.

“Just one of those little sighs to me is worth the cost of a thousand seizures any day,” he said.

For updates on their Bucket List progress, visit the Bookers’ website or Facebook page

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'So You Think You Can Dance' Contestant: Hair Is Not Something I Need to Be Successful

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“This may sound crazy,” Nigel Lythgoe, producer and judge of “So You Think You Can Dance,” told dancer Franchesca Bass after her audition, “but maybe the alopecia is the making of you because you are so totally unique.”

Bass, 18, who lost all of her hair to alopecia areata when she was in sixth grade, auditioned in Chicago for SYTYCD’s 11th season — and went straight through to the next round in Las Vegas.

“Hair is just an asset,” Bass said before her audtion. “It’s not something that I actually need to be successful.”

She proves just that in her audition:

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Why 3 Friends Are Attending the Worst Concerts They Can Think Of — Completely Sober

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In the last two years, John Simon, Tony Cerame and Jason Struttmann have soberly seen Creed, the Backstreet Boys and — after tonight — Cher in concert. Why? To raise awareness and money for multiple sclerosis (MS), of course. Humor, sarcasm and all-around absurdity is the best way to fight the debilitating disease, they think.

In 2008, Simon visited a neurologist after experiencing dizziness and double vision. When he was then diagnosed with MS, “it was completely terrifying,” he told The Mighty. Still, when he sent an email out to his friends and family about the diagnosis, he made jokes — not to trivialize the disease but to lighten the mood.

That email’s tone struck a chord with Cerame — how could he use humor to raise MS awareness? The answer, he found, was to promise to attend horrible concerts if people met fundraising goals. He wondered, how much money would people donate to get him, Simon and Struttmann to attend a Creed concert — something they all imagined to be terrible — completely sober? One thousand dollars, at least, they thought and set up a CrowdRise campaign. In two days, they broke that goal, raising more than $3,000.

“The initial engagement and support for it really made us think that we’d tapped into something,” Cerame said. “We’re sort of accidental philanthropists.”

With Simon, they set out to attend more concerts. Up next: The Backstreet Boys — the three attended the boy band’s concert with spray tans and frosted tips and raised more than $4,000 on CrowdRise.

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Next, the three will attend a Cher concert — dressed in drag. Already, they’ve raised more than $6,000.

“None of us have any malice in our hearts for Cher,” Simon told The Mighty. “The project has grown into, ‘What can we do to make people pay attention and want to engage? We want to reach people who don’t necessarily have any direct ties to MS.”

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Simon, who’s thankful that medication has helped keep his MS symptoms at bay, of course wants to raise money for research, but he and his friends are mostly focused on raising awareness. He knows that a lot of people don’t understand what MS is.

“Maybe, through what we’re doing, someone will learn and be able to empathize with a person with MS,” he told The Mighty.

Cher4MS benefits the National Multiple Sclerosis Society Gateway Area Chapter. If you’d like to make a donation, head here.

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A Photographer Asked People With Serious Illnesses Their Thoughts on Death. These Are Their Answers.

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Photographer Andrew George was standing at a memorial service for his friend’s late mother when the idea first came to him. He wondered, while marveling at her friends’ and family’s genuine love for her, what made her life extraordinary. What had she done to bring out such raw emotions in people?

“She was exceptional in that she emanated joy and never seemed to show fear or self-consciousness,” George, 43, told The Mighty in an email. “Yet, regrettably, she was no one you’d ever learn about if you didn’t know her because her material accomplishments did not include fame.”

George wanted to meet others like his friend’s mom — exceptional people who seemed unexceptional at first glance. He wanted to hear what wisdom they had. He reached out to hospitals in the Los Angeles area to see if he could interview people in palliative care facing serious to chronic illnesses. Most doctors said no. But Dr. Marwa Kilani at Providence Holy Cross Medical Center said yes. With permission, George began photographing and interviewing patients in a series called “Right Before I Die.”

“There was so much of value we could all learn — healthy or ill — from the authentic, hard-won wisdom of these men and women,” George told The Mighty. “And yet, society would deem them unremarkable for, like most of us, they lead lives out of the spotlight of media attention and won’t be mentioned in history books.”

Below are a few of George’s portraits and excerpts from his interviews. Visit the “Right Before I Die” website to view the entire series. George notes that he does not include each person’s disease or career on purpose.

“These men and women were no different than any of us, and sooner or later, we would all be experiencing what they were,” George explained. “[Their stories had] a profound richness, poignancy and simplicity that illustrated so clearly how we could learn what we all seek: to live more fulfilling and loving lives.”

“I feel that life is very pretty. I’ve always liked to work, fight and well, for me, life is very pretty.” — Sara

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“I feel calm, at ease, because I already know I am going, so every night I tell God, ‘You know what you are doing.’ I’m not scared of dying; I already lived many happy years.” — Josefina

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“Life is what you make of it here on earth and a lot of the times I haven’t made the most of it, but a lot of the times I have.” — Chuck

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“I’m lucky to have a positive outlook — it’s harder to not have one because then you have nothing to look forward to.” — John

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“I hope I’ll be remembered as someone who doesn’t give up.”
— Ediccia

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“If I could go back to any time in my life? Right this minute.”  — Irene

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“You have a one-way ticket. Don’t waste it!”  — Abel

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“The meaning of life is to give happiness to the human being that you love.” — Donald

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