How This Mom Is Teaching Kids to Find Beauty in Her Daughter's Differences

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mother with children Kerry Lynch would much rather you ask questions than point and stare or make an obvious attempt not to stare. Her 2-year-old daughter, Mary Cate, was born with a rare genetic disorder called Apert Syndrome, which gives her facial and cranial abnormalities and developmental delays. Basically, she looks a bit different. But really, Mary Cate is an everyday 2-year-old. Her mom wants others to see that.

So Lynch and Mary Cate prepared a presentation and began visiting schools in the Chicago area to teach kids how to understand people’s differences. In the last year, the pair has visited nearly 30 schools.

“I figured before she gets to an age where she’ll have to answer all these questions in school, let’s show the kids, ‘This is who she is,’” Lynch told The Mighty. “If I can make her life even a little bit easier, I’m going to do it.”

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When Mary Cate was born, her mom, dad, and doctors faced the unknown. Only one in 65,000 to 88,000 newborns are born with the condition, according to Genetics Home Reference.

“We were terrified,” Lynch recalled. But even amidst the fear, crying and Googling of symptoms, one moment sticks out in her head — the day she and her husband brought Mary Cate home.

 

“It was a few days before Christmas,” Lynch told The Mighty. “When we pulled in, we saw that someone had decorated our house for us.”

In the last two years, Lynch says she remembers the kindness more than the uncomfortable moments that come when your child looks different than other kids. She recalls neighbors and friends who make dinners or send support when Mary Cate has yet another surgery in a children’s hospital in Texas. She remembers a woman who walked up to her, hugged her and said, ‘God bless you.’ She is in awe of the 11,000 people who like the Facebook page she has for Mary Cate and regularly visit her website. This is why Lynch visits school — so more kind moments pop up for her daughter — and for all kids with disabilities.

“I want to encourage kids to ask questions,” Lynch told The Mighty. “If I can make one person see differences in a different light — that’s what I want.”

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My Son’s Disability Defines Him (and Why I’m OK With That)

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I’m sensitive to words. I think they’re interesting. I think they’re fun. I love that words have meanings behind their meanings.  I love that definitions are so inadequate. When you’re the mother of a child with special needs, you hear a lot of different words that mean the same thing.  Disabled, handicapped, differently-abled, special needs, wheelchair user– and amid these swirling words, each carrying connotations like verbal baggage, I see patterns.

Just the other day, I noticed a trend. While scrolling through my Facebook news feed, I read an update that went something like this:  “My friend’s son (who happens to have spina bifida) just got his first wheelchair!”

“…happens to have…”  I’ve seen this kind of language before. I’ve even used it myself.  

A girl, who happens to have CP.  
A child, who happens to have Down syndrome.

Happens to have— a purposeful afterthought. We use these words to create distance between our children’s inner selves and their outward physical state.  We want to separate the people we love from situations that are less than perfect. We don’t want their bodies to define them.

But the truth is, my son doesn’t “happen to have” a disability.

He just plain has one.

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His experience with disability will be (and is even now) woven into his life.  It is embedded just like being a child of divorce is embedded in me. Or being the father of a child with special needs is part of my husband’s identity.  My son’s disability is defining. It is not a side note. It is not a post script. In the story of his life, his disability will not be scrawled hastily in the margins nor will it be offhandedly mentioned in the afterward. It will be front and center, along with his strengths, his flaws and his accomplishments.

Do I think that my child is nothing more than his bodily limitations?  Certainly not.  Do I believe that his diagnosis is an adequate definition of who he is? Not at all. But having spina bifida is a significant piece of his life story and there is nothing about who he is or where he comes from that I want to gloss over.  I want him to see himself in full.

If we believe our children should have pride in themselves, that they should respond to every aspect of their lives with grace, then we cannot separate them from their circumstances.

I don’t want him to say “take that!” to his diagnosis– I want him to thrive in it.  I don’t want him to downplay– I want him tocelebrate. I want him to say disability and hear dignity.  

I want to look my child in the eye, loving every inch of potential and pain, saying, “You are my son. You are defined by your experiences and your reactions to them. You are defined by your mind and your body. You are defined by your kindness and your faith and your integrity. You are defined by your disability. And every piece of you is beauty.”

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This post originally appeared on What Do You Do Dear?

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My Greatest Sorrow Is My Greatest Joy

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Enjoy the little things, for one day you may look back and realize they were big things.” — Robert Brault

abby-ferguson-3 She’s dying. My 9-year-old daughter is dying.
Today I can say it without crying, but not necessarily tomorrow. Each day is filled with up and down emotions. Some days I am hopeful for a cure, but many days I am filled with despair and an indescribable sadness. My heart aches. My tears burn. My head and my body are tired.

You see, my daughter Abby was recently diagnosed with a rare, genetic disease that is terminal. There is no cure or treatment. No cure. 100 percent terminal. Every child diagnosed with this disease will die. I have never felt so helpless. As mothers, it is our job to nurse our child’s boo-boos, dry their tears, teach them how to deal with sorrow and upsets and give them hope for a future filled with success and happiness.

Abby looks like a typical, healthy 9-year-old, but her little brain is slowly fading away. She was normal in her development and met the usual childhood milestones until age 4 or 5. She then started to show a decline in her cognition and learning ability. We went through years of testing to find out the cause of her developmental delay. What we found out was worse than anything we could have imagined. She was diagnosed with Sanfilippo Syndrome, a rare disease that we passed on to her. How could that be? How could our precious daughter be born healthy and at age 8 we find out she is not healthy at all? She was born with ten fingers, ten toes, passed her screening tests, walked, talked, potty-trained on time and was very outgoing. We just did not understand.

Her disease causes progressive brain damage. She will lose her ability to walk, talk and feed herself. She will more than likely lose her hearing and have seizures. Most children diagnosed with Sanfilippo Syndrome do not live past their teenage years. Aside from losing her, our biggest fear is watching her suffer. The thought of watching her lose abilities that she once had slowly fading away just makes my heart ache even more.

There will be no driver’s license, prom, graduation, college or wedding. My husband will not get to teach Abby how to drive or walk her down the aisle, I will not get to pick out a prom or wedding dress with her, we will not visit colleges and we will not get to revel in her children. These are things that we are gradually learning to let go of. As parents, we just assume that most of these things will be in our child’s future.

Needless to say, we have done a lot of praying, researching and connecting with other affected families to try and find our way through this life-changing event. Through all of the sadness and sorrow of the past year, we have been privileged enough to gain new perspectives on life. We found strength we never knew we had. Our faith has grown even stronger. We have learned not to take each other and each day for granted. Our relationship with each other has been strengthened. We rely on each other so much more to get through daily life with a special needs child. Our lives are filled with difficult conversations, making dreaded decisions, explaining her illness to people, never-ending doctor’s visits — things that most people just can’t understand.

The most important lesson that we have learned through this is that we have to live one day at a time. I used to be a planner and thought I knew the path my life would take. As little girls, most of us planned our entire life, down to how many kids we would have. I used to think I would work a particular job, live in a particular house, in a particular neighborhood, have two kids, two dogs and have a pool with a cute little fence around my house. Since Abby’s diagnosis, my husband and I both changed jobs so we could spend more time as a family, we sold our dream home and down-sized and we moved closer to our extended family. Our lives have done a complete turn-around.

After Abby’s diagnosis, we live by the cliche, “enjoy the little things, for one day you may look back and realize they were the big things.” Now, I just want to enjoy a smile, a hug or a laugh from my daughter. I want to sit with her and play. I want to help her brush her teeth, wash her hair and put her shoes on. I can’t take enough pictures of her. We celebrate the smallest accomplishments as if she won an Olympic medal. I am aware of what the future holds for her but try not to think about future milestones. It is too painful. I just want to live in the moment and enjoy her right now, the way she is.

*Please visit Abby’s Facebook page at www.facebook.com/CureSanfilippo to learn more about her progress and fight for a CURE.

*To learn more about Sanfilippo Syndrome, please visit www.mpssociety.org or www.teamsanfilippo.org.

This post originally appeared on Strengthening the Soul.

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The Song That Helps Me Appreciate the Wonder in My Son's Spina Bifida

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The drive up to see Henry’s specialists is a long one, and most of the time we need to wrassle everyone in the car and hit the road before the sun’s even come up. Clinic days start promptly at nine. We leave the house at six-thirty to avoid rush hour traffic, we drive 90 minutes (if we’re lucky) up to Park Ridge, and by the time we find parking and grab a muffin for June, it’s time to report to the radiology lab for Henry’s pre-admission ultrasound. By 9, I’m exhausted and we’re usually only still in the waiting room. Clinic days are a doozy.

Every clinic day is different, but we’ve developed something of a tradition. Every time we go to the spina bifida clinic, I swing by Starbucks, purchase a big-ass iced chai latte and pull out Natalie Merchant’s Tiger Lily CD that my husband purchased at Half Price Books last year (it’s always in our car because seriously? Have you heard it? That album is great). I turn on the second track and drive into the sunrise with this song on blast. I even throw in a fist-pump or two if it’s not too early.

I love her songs. I was eight when that album came out, so it reminds me of early fall afternoons as a third grader, watching episodes of Pop Up Video and eating fruit roll-ups while I struggled to do my math homework.

I blast that shit.

“Too noisy!” June hollers from the backseat, but mama don’t care. There’s one song in particular that I have to hear.

Doctors have come from distant cities
Just to see me
Stand over my bed
Disbelieving what they’re seeing 

Maybe it’s too on-the-nose. Mama don’t care. I had heard this song before in the third grade, and it was catchy, and I’m pretty sure the Pop Up Video version made my afternoon, but when I listened to it after Henry was born the entire world melted away and I grabbed my noise-cancelling headphones and blasted it because I was hearing it all for the first time. This is our anthem. And what more appropriate place to listen to it when we travel back to the place where we were first told our little boy would never walk?

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as she came to my mother
Know this child will not suffer
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She’ll make her way

I adore this song and it resonates in my bones more than any Haas/Haugen song at Sunday Mass. It’s become our anthem. This child will be able. This child will not suffer. He will make his way. It might not be the same way everyone else travels, but dammit, he will make his way.

And it’s haunting — if I could go back in time and tell my old self anything, I would do exactly what Destiny is doing in this song. I would laugh. At the cluelessness of the doctors. In anticipation of our joy. I would whisper in my own ear: He will be able. He will be gifted. He will make his own way. You have no idea. 

I was accused a few months ago of lying. The specifics are unimportant, but basically I got into it with a bunch of strangers in an Internet combox who were asserting that a life with spina bifida is miserable, horrible, and that abortion would be a much preferable alternative. Needless to say, I disagreed. Others chimed in, saying that spina bifida was “incompatible with life” and that I was “minimizing” Henry’s “suffering.” Obviously, spina bifida was awful, and I had no earthly idea what I was talking about. Man. I’m the worst!

Is it difficult, this road we’re driving down together? Yeah. It is. And I want to write more about the difficulties we’ve faced — as a family unit, as a married couple — because sugar-coating our journey ain’t gonna help anybody. My marriage has scars, and I won’t pretend that it doesn’t.

But isn’t that what’s great about wonder? It’s a feeling of surprise, mixed with admiration. We are living this life. We’re walking down this difficult road together, our spina bifida journey. And I fully expected when we got the diagnosis — in all my ignorance — that it would be nothing but hardship and constant misery. And it’s just not. And I’m surprised. And I laugh. He is able. He’s not perfect. None of us are. But we’re able. And we’re making our own way.

And this boy? My smiley boy? So worth it.

I wouldn’t trade this fabulous life of ours, this sometimes-daunting road we’re walking down together. We’re making our own way — with love, patience, and faith. And I wouldn’t trade it for all the gold in Gringotts.


This post originally appeared on wifeytini.com.

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Intense Workout Program Makes Sure Kids With Autism Leave Smiling

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Brian Costello had his brother in mind when he recommended starting a CrossFit program for people with intellectual disabilities.

Costello, whose brother was diagnosed with autism at age 2, owns CrossFit Long Island, where he coaches the intense but popular core strength and conditioning program.

In the video below, you can see how he adapts the workout style to fit the needs of children and teens with intellectual disabilities. Safety and comfort are Costello’s main priorities, but he doesn’t go easy on these kids.

“They didn’t reject the hard work,” he says in the clip. “They seemed to embrace it a little.”

“I want them to walk out with a smile,” he adds.

That certainly seems to be the case:


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The Customer at the Butcher Shop on Starling Avenue

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We’ve been going to the Starling Meat Market for years. It is one of the places in the neighborhood where we are greeted by name. And that is always a nice feeling. Because even in a large community like ours, people still take the time to know you by name.

On Saturday afternoon as we ordered a few cuts of meat for the week an older white man walked in.

He wore khakis and a tan jacket zippered all the way up, the collar of his button down shirt peeking out. The laces on his black rubber sole shoes were neatly tied. His thin white hair was combed back. And around his wrinkled alabaster wrist was a silver bracelet with his name and two phone numbers. His name was “Timothy.”

Timothy greeted Benny the butcher like an old friend. And Benny joked backed the way he does with all his regulars. Their banter was familiar and yet somewhat off. “How loud does the lion roar?” Timothy asked Benny. Benny responded with a roar and Timothy laughed.”He’s big. How old is he?” Timothy asked me, looking at Norrin. His question caught me off guard but I smiled and told him Norrin’s age.

“2006. He was born in 2006. When is his birthday?”

I told him the date and within seconds Timothy told me that Norrin was born on a Friday. He then asked about my birthday, then Joseph’s. And he told us the days we were born.

Timothy then asked where we born. And with each answer, he told us the address and nearest train station. In between all of our questions, Timothy asked Benny how loud the lion roared.

After about 10 minutes of talking, Timothy walked out without saying goodbye.

I knew in our brief interaction that Timothy had some kind of special need — maybe even autism. Our meeting left me with mixed emotions. I don’t meet older people with special needs often, but when I do it makes me think about Norrin’s future.

I don’t know what Norrin will be like when he grows up. I can only hope. I hope that he can be as independent as Timothy. I hope Norrin lives in a neighborhood that he can walk around on a Saturday afternoon and run his errands. And I hope there will be a market owner who greets Norrin by name.

This post originally appeared on Atypical Familia.

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