Beth's daughter sitting outside

As I walked out the door, my 6-year-old, Lily, was worried. She always worries when I take Sarah to the doctor. But Sarah was breathing well — this was not one of her colds turned emergency. She was healthy. I had no qualms at all about telling Lily, “This is not a big deal. This will be a quick trip. I’ll be home in a few hours.”

A few hours later, I was in an ambulance on our way to be admitted to the second hospital of the day. We were rushing. They wanted to put her in an operating room right away. Would Lily think I’d lied?

My 3-year-old daughter was in the hospital again. Honestly, the surgeries are bad enough, but these unplanned trips really take a toll on the whole family.

It’s hard to express the feelings associated with these events. It’s happened often enough to feel familiar, familiar enough to even inspire a certain level of comfort. Sarah slept peacefully in the back of the ambulance while I chatted amiably in the front with the driver.

Familiar but discouraging. It can be really, really discouraging.

I don’t want to be the mom who knows the ER doctors by name and has favorites. I don’t want to be the mom who knows who to ask for when the nurse cannot get an IV in her arm. I don’t want to be an ambulance connoisseur. But I am.

Put on your game face. Wear optimism like armor.

Avoid discouragement, pessimism and frustration. Above all, don’t ever compare your kid to other kids. There isn’t a special needs handbook teaching us how to be parents, but if there was, that is what it would say. Block print, bold face, all caps: DON’T COMPARE.

It isn’t fair. But you can’t go there because your job — your one and only job in that time — is to help get your kid better. You can’t do that if you’re wrapped up in how unfair it all is. Life is unfair. That bit of pop wisdom doesn’t make you feel any better now than it did when you were a kid.

A good attitude is better medicine than anything a doctor can give, but it takes a lot of energy. Small things aren’t always small. When you need encouragement, small things are huge. It’s huge when people make dinner or send small gifts to the kids or help with cleaning. It’s love. It’s encouragement. It can be the antidote to wearisome pessimism.

One of the first people to offer her help and support and “anything you need” was Madison “Peach” Steiner-Akins. I don’t really know her — I’m friends with her on Facebook. She’s a vibrant, enthusiastic force and a champion for kindness. She’s an artist and an optimistic visionary determined to reshape the world.

She was offering the support of a community she built with smiles and art and joy.

Peach believes that kindness is contagious. She believes that small things make a big impact, and she believes that hope heals. So, she founded Peach’s Neet Feet. PNF uses a diverse group of artists, including Peach herself, who volunteer their time to make special shoes. Magic shoes.

shoes given to Beth's daughter from Peach's Neet Feet. one shoe has a picture of minnie mouse and the other shoe has a pink banner that says 'choose kind'

The shoes are custom painted for kids who need inspiration — kids who are fighting bigger battles than kids should have to fight. Each child has their own story and interests and dreams. These shoes provide the canvas for them to illustrate a small part of that.

When Sarah received her shoes, she knew they were for her right away. Minnie Mouse and rainbows! She was so excited. We put them on, and she immediately stood up a little straighter than usual. I don’t know whether they were a better fit for her foot than she was used to or if she was just excited and proud, but what happened next was pretty amazing. Sarah took a step. Then another one. Then, she walked all the way to her dad. It was not independent — I was helping her balance — but that was dramatic progress! Before that day, I had never seen Sarah move her left foot independently. I would literally have to pick up the foot and move it for her. She would lift her right foot and then would try to lift both feet together. Then, she’d fall. I was beginning to wonder if there was a neurological reason for the preference. Just seconds after putting on her “magic shoes,” Sarah was taking alternate steps. It was work, but she was working. The next day at school, her teachers and therapists also noticed the magic. Just a few days later, they removed the support from her gait trainer.

Beth's daughter walking in her new shoes from Peach's Neet Feet

On its own, that is pretty awesome, but it is just the beginning of the mission. The families are not asked to pay for the shoes with money — they are asked to pay in kindness. Wear the shoes. Be awesome. For payment, complete (at least) one random act of kindness.

With the shoes, Peach built a community. Our community shares stories and encourages each other. We draw strength and courage from each other. When someone needs a lift, she “Peach love bombs” them. She asks her people to help uplift families and do whatever they need. Siblings having a hard time? Parents overwhelmed? Families have different needs. The Peach community steps up, sending anything from coffee cards to toys for the siblings to cleaning supplies. Stuff is just stuff, but they are sending more than that. They are sending courage and hope and love. It is a beautiful and growing community of families and artists sharing stories and smiles.

Encouragement is not a small thing. Wanting to do something and believing you can are not trivial. Healing needs hope. Kindness spreads. Little things aren’t always little.

Peach’s Neet Feet uses art to inspire kids. It may sound small, but it isn’t. She’s doesn’t just say, “Get well.” She says, “Go be awesome! Inspire someone!” It’s a genius mission to spread kindness and healing hope. And it is working. For the kids, for their siblings and for the community.

This post originally appeared on Joyful Catholic Mom.

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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.”

classroom of children

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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.”

children with paper hearts


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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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