Dear Apert Syndrome,

You are so limited.

You made your grand entry into our lives uninvited and unannounced. You showed up in one of the most intimate and exciting moments parents experience, seeking to steal from us. And you did. You stole our breathe. But you did not steal our love. You are so limited.

In the NICU you flexed your great muscles trying to show us just how big and strong you really were. With each new medical term, new specialist and new insurance question, you sought to overwhelm and overpower us. And you did. For a moment. But it didn’t take long for us to realize all this new information was just that — new information. And so we read and we studied and we had countless meetings, made infinite phone calls and sent dozens of emails. We became knowledgable. We were equipped. We made a plan. Did you really think you could hold us down? You are so limited

You thought the Internet would be your ally. You thought if you could bombard us with pictures of things we’d never been exposed to, we might crumble. What you didn’t expect was for us to see beyond the pictures to the stories. Stories of people being loved and loving, stories of strength. The tool you hoped would cut us down has provided us support groups and a whole new world of connectivity and help. You are so limited.

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Then you really got nasty. You called in all your buddies and tried to bully us. Month after month you showed us just how many friends you had, how many areas of our son’s body you and your mob could attack and how nuanced and random you could choose to be. Respiratory, vision, hernia, the weirdest pylorus known to man, mal-rotated small intestines… to name a few. You and your buddies kept us and our son in the hospital for months, much of that time separated from his sister. What you didn’t expect was for us to have more friends. Better friends. And an incredible family. They cleaned our house, cooked our meals, sent money to help, took care of and cherished our daughter, took day and night shifts at the hospital to provide relief. They checked our mail, did our lawn and they prayed for us. They prayed hard. You and your gang thought you were big and bad, but our posy turned out to be stronger. You are so limited.

You planned to isolate us, didn’t you? At the very least you must have thought you could separate our boy, single him out. And while he may stand out, he’s far from alone. Did you know his big sister, just 16 months older, doesn’t even realize this is not “normal?” When she plays with her baby dolls, sometimes they throw up and she asks for a napkin and wipes them up and then wipes the floor. And when I’m listening to her brother’s lungs through the stethoscope that I have become quite proficient with, she lines up for me to listen to her — she doesn’t think it’s strange, she just thinks that’s something good moms do for their kids. She was barely 2 when she learned how to turn off the machine feeding him thru his g-tube. And the two of them giggle and they hug, and they can’t wait to see each other in the morning. As for friends — he has lots of those too. Kids and adults of all ages, shapes and sizes. You may have hoped to shrink his world, but what you’ve actually done is expand others’ worlds. You are so limited.

Please don’t think I’m treating you flippantly. You have your territory. You automatically come with surgeries, therapies and in many cases, traches, adaptive technologies, delays, etc. You’ve brought name calling to others, and I’m sure you will bring teasing and taunting to my precious son. You do change how our family’s time is spent, and you do touch every relationship any of us is in. You keep us in places we want to leave and keep us from places we want to go. There are things my son hasn’t done yet that many of my friends’ younger children do easily. There may be some things he or I never experience. You’re without a doubt a force to be reckoned with, and I respect that. You’ve caused us to rewrite our standards, to change our expectations and learn to navigate within new boundaries. But rewrite, change and learn we have. You’ve won a few days here and there, but love has, is and will win the war. You will affect my son every day for his entire life, but make no mistake — you’re so limited.

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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Dear Moms and Dads,

I want to talk about something uncomfortable. It’s come to my attention that many of the best among you are making a big mistake. I understand. I was too, two years ago.

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My daughter has a rare genetic syndrome called Apert syndrome. When she was a baby, the plates in her skull fused together. That meant there was no room for her brain to grow, and she needed surgery right away to relieve pressure. Her head is larger than average. When she was born, her fingers and toes were fused together. She’s had the first surgery to separate her fingers, so now her thumb and pinkie are released.  She has a tracheotomy, so she cannot talk yet. Because of various complications, she’s spent a significant portion of her young life in the hospital. She’s developing muscles she needs to sit up on her own and to walk. She will do these things, but for now she’s in an adaptive chair. My beautiful girl stands out.

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I already have to teach my girls that some people are just mean and you cannot let it bother you. I already have to teach my girls that loving people who are mean is part of what it means to be Christian. I am trying to teach them that most people are good, and that is where you come in.

When I take my little girl out, we see all kinds of reactions, but the most natural, the most genuine, the most common, is the reaction we see from most kids. They look.  Some are puzzled. Some worried. The most adventurous of them ask questions. Almost all are curious.

Staring is rude. Pointing is rude. You know this. You’re embarrassed by your child because they’re pointing or staring. You shush your child and pull them away quickly, and I know you’re doing it to save my feelings, but my feelings are not so fragile and your action is doing real damage. You’re teaching your child to be afraid of what they don’t understand. I bet that most of you have a short conversation about diversity and not staring later; you’re good parents, after all. I would like to challenge you to have the conversation right there. Put a smile on. Say hello. Introduce yourself and your child. I will introduce myself and my children. Your child will ask questions. Likely the same questions you would want to ask, but you feel rude highlighting the differences, even when they’re obvious.

Here’s the thing: kids categorize. They need your help — and maybe mine — to make sure Sarah gets into the right category. They ask questions to figure out how things fit in their world. When you don’t let them ask their “rude” questions, you confirm my daughter as “other.” Believe it or not, every kid I’ve met who was allowed to ask as many “rude” questions as they liked, learned in just minutes to see my daughter as I see her. She is just a kid.

She loves lollipops. She laughs at her granddad. She has favorite music. She’s going to school this year. Her favorite color changes all the time. Today it was green. She has a younger sister and an older sister. Her favorite TV show is “Veggie Tales.” She’s Daddy’s punkin and Mommy’s sweet pea. She will absolutely charm you with her wide, blue eyes.

Imagine what my daughter sees. A sweet little face unable to look away from her. Pointing. Then an adult pulls the child away, consciously avoiding looking at her. Now imagine this happening over and over again. She’s a bright little girl, and this is hurtful.

At the very least you can model the behavior you wish your child had shown. Make eye contact with my daughter and smile. Anything less and it won’t matter what you say about diversity later. Anything less and your kid and my kid both get the same message from your embarrassment: My daughter is “other.” She’s something, not someone. The initial fear was confirmed. I will take rude questions over that hurt any day.

I’m not accusing. I know it’s hard.

There are nasty bullies in the world. We’ll get over that. We’ll get over the stares and the pointing from people who should know better. We’ll get over the nasty comments.  We’ll get over the name-calling. We’ll get over it all because, as I told my older daughter, no matter how many people cannot see past her differences, Sarah is surrounded by people who love her. People who see her. And she’s amazing.

Kids are not mini adults. They’re astounding little people. They’re curious and open and full of wonder. You can teach them to see a child like them when they see my precious girl, who looks different and rides in a wheelchair. You can teach them to see her as a potential friend. Or, you can teach them to be afraid. It’s your choice. I won’t judge. Like I said, I was you and I didn’t know how to act either. You don’t have to be one of the people who love her — though honestly, you absolutely will if you give yourself half a chance — but please, be one of the people who see her. Teach your kids to see her. Please.

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This post originally appeared on joyfulcatholicmom.blogspot.com.


Dear Beth,

When you go to the doctor today, you’re going to get a sucker punch. I’m sorry. It’s going to hurt. Even without the pregnancy hormones, this one will be a low blow. There’s nothing I can say to prepare you for the cruelty of that doctor and his nasty delivery. Listen to me.

When he says, “You do not want to carry this pregnancy to term,” he’s not being deliberately cruel. He just doesn’t have a clue. He doesn’t know that you already fell in love with your daughter. He doesn’t get it. And he might not ever. Don’t waste one iota of energy being angry. Just move on. He’s the first in a long line of people who cannot see your daughter and only see a diagnosis or a prognosis. Believe me, the cliché is true: it’s his loss. It must be a sad and lonely, filtered and false world.

Hang on tight to your mom’s hand. Know without a shadow of a doubt that your doctor is an exception. You will meet a lot of doctors and most of them are incredibly kind, brilliant, wonderful people. Many will fall in love with your sweet girl. She’s a charmer. There are a lot of people with a lot of beliefs, but almost all of them would be horrified to hear how this man spoke to you. Please, don’t let that sucker punch form any festering opinions.

You’re about to step into an unfamiliar world. Honestly, I don’t want to tell you too much. You will survive those early weeks when your baby is born. You will not have time to process some of the things that will come your way, and in a way, that will make it easier. You will just face them. Don’t dwell on that; you can do it.

Own your confidence. Sometimes that will mean wearing a little makeup even though you’re in the ICU and you know no one will care. Sometimes it will mean arguing with the surgeon in your sleep clothes before you’ve even brushed your teeth. Own it. Whether you’re in the hospital worrying or at the mall conscious of staring, hold your head high and smile. Be proud.

Don’t be a martyr. You can focus on all the wrong things and spend your life miserable, or you can choose to seek joy. This is true for everyone, but it’s going to be more of a temptation for you than it used to be. People all around you — good people who love you — will say they’re sorry a lot. Especially at the beginning, you’re going to hear a lot of pity. It’s well-meant, so don’t get upset. But don’t let their perception of your difficulties define your perception of your life. Pick your head up and show them why they should envy, not pity you. There is a lot of joy. Find it and celebrate it.

You will throw parties. Home from the hospital parties, birthday parties, no one was sick this week parties and tea parties.

Laugh a lot. Live the life you want your children to see. Be active. Be a force. Love. Laugh. When people tell you not to laugh in the NICU or the PICU, tell them this: It’s there, more than anywhere else, you need to laugh. When people see a smile, they often smile. Decide right now that you’d like to be surrounded by smiling faces. You don’t know what people are going through. If they don’t smile back, say a prayer for them. It’s OK to laugh about what your nurse did last night or your favorite college memories, even when your sweetheart is ill. Do you think she — sedated, intubated and scared — would rather hear hushed whispers or laughter coming from Mom? Hold her hand. Kiss her. Love her. And laugh. A lot.

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Shake off the guilt. You will feel guilty for laughing. Don’t. You will feel guilty for crying. Don’t. You will even feel guilty for celebrating the birth of your next child. Shake it off. You are allowed to celebrate. You are allowed to have feelings. And in spite of all I said in the last paragraph, you are allowed to cry or be angry. Don’t immerse yourself in those feelings, but honey, they are real and normal. Feel and express. Find an outlet.

Don’t hide your faith. You don’t have to get on a soapbox, but honestly. This is who you are. You will lean on God. You will hurt. You will question. You will see miracles. God is listening and answering. He is also speaking and calling, so you need to listen and answer too. And it’s OK to get mad at Him. He can take it. Keep listening.

You will have an on-again off-again relationship with special needs networks. Sometimes they’re a judgment-free haven where you can ask questions and vent and talk to people who get it. Sometimes they’re depressing. Remember that the world is full of all kinds of people. Just because you share a diagnosis doesn’t mean you share anything else. And that’s OK. Take what they offer and don’t feel like you have to be all in or all out. Sometimes it will be just what you need. Sometimes you will need distance. That’s OK, too.

You’ll lose some friends. That is going to hurt. But you’ll make friends too. And you have a strong, supportive family. Be prepared to be amazed by how strong and how supportive.

And here is the biggie: fall in love with you husband. Again and again and again. You will go through this together. Statistics on marriages with medically complicated kids are bad. Scary bad. And you need this man. When you need him the most, you will be separate because one of you will be camping out in a hospital chair. Get on the phone and tell him exactly how much you miss him. It will be both harder and more important to go on dates. Hug him and hold him and do what you can. Go on dates, if you can. Stay up too late sometimes. You will think it is irresponsible because you are already sleep deprived. I promise, neglecting that relationship is more irresponsible. You think you love him now, and you are right. But that love is only a seed.  Tend it and watch it grow.

Craft store gospel truth: Live. Laugh. Love.

Good luck. Pray for me.

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For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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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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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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?


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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