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The 3 Words I Want Siblings of Children With Special Needs to Hear

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To the siblings who sometimes feel invisible, I see you.

To the ones who have celebrated Christmas and Thanksgiving in the hospital instead of around your dining room table, I see you.

To the kids who get shuffled from one family member to the next during hospitalizations, I see you.

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To the children who trade video games at sleepovers for blown-up medical gloves during hospital visits, I see you.

To the students whose parents have missed games, performances, concerts and school presentations, I see you.

To the kids who turn speech and physical therapy into fun games, I see you.

To those who have blown out birthday candles in hospital playrooms, I see you.

To the kids who share their houses with nurses and therapists, I see you.

To the students who have been picked up unexpectedly from school, only to find out your sibling has been taken to the hospital again, I see you.

To the children who have grown up too fast and have way too much medical knowledge, I see you.

To the “doctors-in-training” who give tube feeds, suction trachs, silence ventilators and clean hearing aids, I see you.

To the kids whose world gets turned upside down by a medical emergency, yet are expected to keep it together and be well-behaved, I see you.

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To those who must worry about how long you’ll have your siblings and wonder what life would be like without them, I see you.

I see you having a compassion others your age just don’t have. I see you unabashedly loving your siblings and being their fierce protectors. I see you trying to change the world’s perception of kids with special needs by reminding people not the use the R-word. I see you playing with your siblings and accepting them just as they are. I see you growing up to be therapists, doctors, nurses and special education teachers, because you have seen firsthand the difference these people have played in your sibling’s life. I see you taking on the role of caretaker as adults when your parents no longer can. I see you being thankful for the small things in life, because you understand those are really the big things.

So to the siblings of kids with special needs, thank you for all you have given up so your brother or sister can get the best care possible. We couldn’t do it without you. You are loved!

Follow this journey on Life as a Leach.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or illness, and what would you say to teach them? 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 Share Your Story page for more about our submission guidelines.

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The Sound I’ll Never Get Used to as a Special Needs Mom

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“Code blue, 7 south, room 21. Code blue, 7 south, room 21.”

I look up in alarm as 10 staff members take off in a dead run down the hallway of the PICU.  The alarm continues to repeat the location as more staff members head that direction. I can hear the attending shouting orders to the nurses and residents. There’s the distinct sound of a mother’s cries amidst the cries of the alarm. 

I’ll never get used to it. Somewhere down the hall, someone’s child is fighting for his or her life. Somewhere, there is a mom praying her child will make it. Tears roll down my cheeks for her, because I’ve been there.  

My mind drifted back to just over a year ago, when my daughter, Abby, coded after her intubation tube kinked while she was sedated after a major surgery. My mom had been visiting. Abby was agitated, so I called the nurse to see if she could give her some additional medications. All of the sudden, her saturation levels started dropping quickly. Her thrashing around had caused the tube to kink, but we didn’t know that at the time. I watched in disbelief as her saturation levels plummeted from the high 90s to “No Breath Detected” in a matter of seconds. The nurse began to bag her as she pushed the Code Blue button. The image of 15 staff members crowding the room to attend to my daughter will forever be sketched in my head.  

I recall backing out of the room in shock, never taking my eyes off of my beautiful little girl. I couldn’t pray, I couldn’t blink, I couldn’t breathe. I noticed a young female resident with an unmistakable look of terror on her face. She stood in the back, nervously taking in the situation. I found out later that this was her first code. She will never forget my daughter. Abby was her first… sadly, her first of many.

I come back to the present as I realize the Code Blue alarm is still sounding its terrifying message. And I know that up and down the hallway, there are moms and dads just like me praying for the situation, but silently thanking God that it wasn’t their child.  

This time.

Because, you see, parents like us — we live in the woods with our kids. They are never truly “out of the woods.” We have just learned to find beauty in what the woods has to offer and make the best of it. And that is how you discover the joy in the journey.

Follow this journey on Life as a Leach.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or illness, and what would you say to teach them? 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 Share Your Story page for more about our submission guidelines.

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To the Medic Who Thought I Was Faking

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I wish you knew how scared I was when you came. I didn’t understand why my body was twisting and turning and convulsing, why I couldn’t speak or open my eyes. I was in excruciating pain from spasms that twisted my limbs so far, I thought they would break. It was difficult to breathe when my body twisted around like it did. Most of all, however, I was terrified of what these episodes were doing to my unborn baby.

I didn’t catch on that you thought I was faking until you had me away from the watchful eyes of my family who were desperate for me to get help. I could hear the annoyance in your voice when you got down in my face and demanded that I cooperate and asked why I refused to open my eyes or speak. I wish you understood that I tried; oh how I tried to open my eyes and respond. By then, I wanted nothing more in that moment than to escape. I wish you knew how trapped I felt, locked inside a convulsing body, strapped too tightly to a stretcher, enclosed in an ambulance with the doors slammed shut.

Never had I felt more helpless and alone.

I wish you knew just how shockingly painful that pinch was that someone gave me. I suppose the idea was to see if it would make me snap out of it. Indeed, I wanted to sit up and scream in indignant pain, but instead I was forced to lie there in silent agony, imprisoned inside a body that wouldn’t cooperate.

I wish you could know just how incredibly difficult it was to lie there and hear you give misinformation about me yet again as you handed me over to the care of those in the hospital and left the room. It was so distressing not to be able to speak up and correct it, and no family members were present yet to hear it. I couldn’t tell them what had happened until hours later.

I never saw you again after that (technically, I have never seen you because I couldn’t open my eyes). Your work was done after transporting me to the hospital. But you opened my eyes in an entirely different way. You introduced me to a whole bewildering world of being placed under suspicion by the very people I thought would try to help me.

I was handled roughly, observed closely for signs of faking and tested for drug abuse. They did run a few other tests, in part because my husband insisted, but the overall feeling I was left with was that somehow this was my fault, and that my physical symptoms were deemed as not “real.” At least, they made it very clear I wasn’t having a real seizure. They didn’t give me anything to ease my symptoms or even offer a glass of water once I could swallow again. Instead, I was endlessly questioned by a psychiatrist trying to get me to admit that this all was brought on by some sort of emotional trauma. The truth is, the emotional trauma I experienced was from the way I was treated. I was in shock, in disbelief and feeling helpless.

I wish you knew how long it took me to quit having a feeling of panic whenever I saw an ambulance after that. How after all I went through that day and since, I’ve made my family promise never to call for medical assistance whenever my movement disorder takes over my whole body by storm in that non-seizure way. That I’d rather suffer at home and wait it out than to risk being thought I’m faking and not be helped anyways. How that now, years later, sometimes my symptoms are so severe that I find myself torn between praying that they keep their promise and not call, and hoping they won’t regret it if they wait too late to call.

It is an awful feeling to be more afraid to ask for help than to suffer through such severe symptoms that I wonder if I will make it through.

I wish you knew I wasn’t faking that day, and that I truly needed help. I wish you could have known how this would affect me for years to come.

I want to thank the doctors, nurses and medical staff who have treated me with kindness and compassion over the years. It is people like you who make the trauma of injuries and medical crises a little less scary. And to my friends and family who work in the medical field, I’m so proud of you for choosing that profession and all that you do to help people. I could listen to your stories all day.

But I share my own story to explain why I cringe when I hear tales of patients who are faking, how I wonder if some of them really needed help. How my heart breaks for the patients who share how their suffering was made worse by those who thought they were faking or seeking a drug fix.

I write in hopes that somehow, someone will read my story and remember it the next time they wonder if their patient is faking or not.

Editor’s note: This is based on one person’s experience and should not be taken as medical advice. Please consult a doctor with any questions or concerns.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. 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 Share Your Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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A Small Request to the People Who Pray for My Child With Special Needs

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My daughter Emelyn’s first year was probably the toughest emotionally. Suddenly my picturesque family portrait wasn’t anything like I imagined — there’s maybe a wheelchair or leg braces or facial dysmorphisms or who knows what. The thought brought me to tears on more than a few occasions.

Now, two years later, I roll my eyes at that picturesque family portrait for more than a few reasons. First, I’m so grateful to have connected with other families who also have children with special needs, and those families have some of the most beautiful family portraits I’ve ever seen. The presence of breathing machines or posturing or forearm crutches is not what I see — it’s a family filled with love and hope that I see. Second, the thought that my family would be something I’d be sad or ashamed of still baffles me. Today, I count my blessings each and every day and will continue to do so no matter what comes next for our family.

Photo credit: Aprille Tobey Photography

As I look back at that first year, I realize now I was still a stranger to the special needs world — to my own situation. I was still very much on the outside, in denial you might say, looking into a world that scared me. It wasn’t “normal.” I pitied myself. I felt sorry for my child and for her sister who would one day see her as a burden. I’m not sure what changed, but I’d like to think it was all those little Emelyn giggles brought to you by God Himself. I didn’t one day wake up to this new perspective in my life, but I’m grateful my pity party didn’t last too long.

Now, however, I become impatient with others who want to pity me. It’s unfair, I know. They’re outsiders, and it’s impossible to understand when you’re peeking into my life. It’s probably why I took so long to share our journey publicly. It was a regular occurrence to share Emelyn’s diagnosis and developmental delays, only to receive a somber and pitiful, “I’m so sorry,” or “I’ll pray for you,” from the other person. It’s not that I don’t want someone’s prayers. Emelyn is in my prayers every night, and I’m forever grateful to everyone, including perfect strangers, who also pray for her. But please don’t pray for my child because you feel sorry for her.

Photo credit: Aprille Tobey Photography

Pray for her the same as you pray for our “normal” (insert lots of sarcasm here) child. Pray she grows strong and healthy, stays safe, is always loved and happy, and knows and loves God. Those, my friends, are all I ask from for you.

There’s no need for pity. I can promise you that Emelyn doesn’t feel sorry for herself. She finds herself to be quite funny, actually. And Emelyn’s big sister, Aubrey, certainly doesn’t see her little sister as a burden. To her, broccoli is a burden; her sister is the most important person in the world to her. I don’t ever see that changing.

So, it’s with my insider’s view that I share my perspective on what I believe are God’s unique blessings. The next time a friend, co-worker, family member or perfect stranger tells you about their child’s unique challenge, whatever it might be, don’t apologize or take pity on them. Lift them up and share in their hope and love for their child. Don’t be afraid to ask questions. Ask about today. Ask about the future. Ask about ways to support their efforts. You don’t need to pretend to understand or be in their shoes. We get it — you’re on the outside looking in and we’re grateful to have you as a supporter sharing our journey.

And the next time you see a family portrait that isn’t a “normal” family, know that life may not be easy for that family, but it is a blessing nonetheless.

Photo credit: Aprille Tobey Photography

Follow this journey on Raising Emelyn Grace.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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 Share Your Story page for more about our submission guidelines.

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When You Feel Judged as a Parent of a Terminally Ill Child

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This is an open letter to those who are unsupportive of parents of terminally ill children, and to those who judge.

This isn’t written to any one person in particular. In fact, we’ve been judged and let down too many times to mention. But some hurt more than others, and there are things that ought to be said.

Our son has Duchenne muscular dystrophy, a progressive, muscle-wasting condition. According to the Duchenne Muscular Dystrophy Research Fund (DMD Fund), most boys with this condition lose their ability to walk between ages 7 and 12, and “all activities that call for the use of arms, legs or trunk muscles will require assistance.” The DMD Fund also states that death usually occurs in their teens or early 20s, often from heart failure or pneumonia. There is no cure for Duchenne, no miracles or slim chances; it is fatal.

As a parent, it’s unbelievably hard to watch as your child grows weaker, knowing what the future holds and knowing there is nothing you can do to stop it. But surprisingly, I believe there is something worse than having a terminally ill child — the rifts it can cause that can tear friendships and even families apart.

We found out I was a carrier of Duchenne when I was pregnant with our first child, and we knew our much-longed-for baby boy had a 50 percent chance of having the terrible condition. In that sense, yes, we had the choice. We could choose to have genetic testing and the associated miscarriage risks, or we could choose to continue regardless. We could choose whether or not we had to make that awful choice, the choice of whether to have a child with a terminal illness, or whether to abort the baby we’d desperately tried for over two years to conceive. So yes, you’re right, we had the choice.

Our choice was to decline testing, knowing the risk. But what you fail to understand is that we didn’t choose Duchenne. Instead, I believe we chose life, because we felt our baby deserved that chance. We chose love, knowing he would be loved regardless of whether or not he was genetically perfect. Because to us, he is perfect. You may not have made the same choice I did, but it wasn’t your choice to make.

I’m sorry you don’t understand. But don’t ever expect me to be sorry for the choice I made. My child may not have a long life, but every single day I try my hardest to make sure the life he has is a happy one. This life is far from easy, but it’s more rewarding than you’ll ever know. To me, my child is a blessing. He’s taught me what matters most in life. I’ve learned that life is precious. I’ve learned never to take it for granted and to cherish every moment. I don’t need your approval anymore. I have everything I need — an awesome child, and being surrounded by people who make me happy, the ones I choose to have in my life.

Sadly, ours isn’t an isolated story. Because of Duchenne, I’m part of an extremely supportive community, hundreds of people who understand what it’s like to have a child with a terminal illness. A community where there are far too many stories similar to ours. There is more support around than you can possibly imagine, but it isn’t always where you expect to find it.

If you know someone with a terminally ill child or a child who has special needs of any kind, take the time to understand without judging. Chances are, their child is perfect, too.

Alexis’s mommy

A version of this post originally appeared on The Alexis Ruthven Trust Facebook page.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. 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 Share Your Story page for more about our submission guidelines.

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10 Things I Want Kids Growing Up With a Physical Difference to Know

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To those growing up with a physical difference,

If you’re anything like me, people often stare your direction, and you feel like you’ve heard it all in regards to your physical appearance. And if you’re anything like me, you didn’t ask for this journey — but you’re on it.

I was born with a port-wine stain birthmark that covers half my face, which travels all the way to my brain (causing another condition called Sturge-Weber syndrome) and caused my facial features to be asymmetrical. In the last few years, I started to blog about my journey with a facial difference and how the world often reacts. As I write, I learn. 

Below is a list of lessons I’ve learned over the years, as well as a list of things I wish I had realized growing up. Our physical differences may be different, or maybe you have the exact same type of birthmark in the exact same location. Either way, perhaps you need a boost of encouragement, or maybe you just need to know you’re not alone in your journey.

1. You have a voice. It took me nearly 20 years and my photo going viral to realize I had one. We have the power to stick up for what is right; we have the power to stick up for others and more importantly, ourselves. What you have to say is important. Use your words. Speak them, write them, blog them, YouTube them, put them to a melodious tune. Whatever way you communicate best — do it. What you have to say is important, and people will listen. Write that book, sing that song. You have a story to tell.

2. There are some days and situations you overcome with zeal, and other days you barely survive — and both days are OK. Sometimes there are days that are emotionally draining, and depending on your condition, some of you even experience health scares that leave you unsure if you have another day left on your life’s timeline. But here you are, reading this article. You’ve made it this far. You’ve survived, you’ve overcome more than you realize. You are amazing. 

3. Remember to laugh. Life can be hard, physical difference or not, and laughter is crucial. For example: Half my face is purple, so I refuse to wear certain colors. When I shop with my friends, I often find myself telling them, “Um. No. That doesn’t match my face. A girl’s gotta color coordinate!” Find the humor and joy in life. Look for the positive in every situation. The world is a brighter place when you do. And remember — sometimes the smallest moments are the greatest ones.

4. It’s OK to wonder what life would have been like had you been born “normal.” Just because you ask doesn’t mean you lack confidence, and you don’t have to feel guilty for wondering. I have days when I wonder what I would look like without my birthmark and asymmetrical facial features. I even wonder how my personality would be different, had I not grown up with regular laser treatments, strangers’ awkward gawking and comments. It’s not healthy to obsess and dwell on these curiosities, but it is OK to wonder from time to time. The more speaking and writing I do, the more I come to realize that most people wonder, “What if I looked different?” After all, that’s how makeup and hair dye got invented; it’s what sells high heels and Spanx.

5. If you’re a girl, remember, you are beautiful and stunning. If you’re a guy? You are handsome with tons of swag. This summer I made a new, encouraging friend of the opposite sex. He heard a part of my story and kept emphasizing how beautiful I was, both internally and physically. I found myself blushing, awkwardly looking to the ground, unsure of how to respond. Beyond my grandfather, I don’t recall anyone from the male gender telling me I was beautiful — and for months I’ve tried to recall other men giving me the same compliment. 

Having a guy tell me I was beautiful while standing face-to-face was one of the most internally painful social situations I’ve ever been in. It was, and still is, a foreign experience. Bluntly put, most comments I’ve received about my looks have been negative and hurtful. Growing up, I quickly learned to be on the defense when my appearance came up — especially around new people. I’ve always believed and told myself I was beautiful, but I realized through this experience that I never expected or anticipated a man unrelated to me to think the same thing. But they do, and they think the same about you. And they’re right. Don’t be afraid to let your guard down.

6. There are online support groups you can join. Only three people out of 1,000 people have the same condition I have (according to the Vascular Birthmarks Foundation), and even fewer have their birthmarks predominantly placed on their face. Until a few years ago, and in all my life, I had only seen a couple of people in-person with the exact same birthmark I have — and we never even said hello. Until I was about 21 and started blogging about my story, it never dawned on me that there were online groups I could join. After all, I didn’t have a “birthmark mentor” to tell me teach me these things. 

Now, a few years later, I’m in several groups, and I work for the Vascular Birthmarks Foundation, which also provides a lot of insight and support. You may feel alone in your day-to-day life, but there are people all over the world who relate to and understand you. My family gets my situation to an extent, more than most people. They’re the most supportive family I could ever dream of, but they don’t live with my condition 24/7. When I finally connected with people who also had the same condition? Wowzers. These people get me completely. (At least, the birthmark part of me.)

Post-laser. Survivor. Overcomer.

7. Only you know what’s best for you, especially in regards to your health. Do your research, listen to opinions. But most of all — make sure you make your decision with your parents and doctors by your side, using their wisdom and knowledge to the fullest. 

When I first announced on social media that I would be having laser treatments, people became angry — and they weren’t afraid to voice their thoughts. But here’s the thing… They didn’t know about my condition. They only knew I had a “purple”birthmark, and that was the extent of their knowledge. They didn’t know the medical complications that could arise if I chose not to have the treatments again. 

Sometimes, people who have the exact same condition are also strongly against the treatments. The treatments aren’t for everyone, and that’s OK. Each journey looks different for everyone. It’s OK to vary in opinions. The treatments aren’t what bind us together; it’s the journey and support.

8. Your condition doesn’t define you. Yes, it’s a part of you, but you are still you, no matter what people say. No matter what you look like. Be confident. You’re a rock star.

9. There are amazing people who will support and encourage you — people who will get to know you beyond what they see. Sometimes it can be discouraging when people stare or make rude comments. Thankfully, not everyone reacts in a cruel and hurtful way. I’ve always been able to make friends easily, but it did take me a while to find a good group of close friends who are always there for me. We’ve all been hurt by someone, but don’t ever be afraid to make new friends. For every unkind person, I believe there are at least twice as many beautiful, kind people.

10. You can change the world. You have just as much power as anyone else. Shoot for the stars, go for the impossible. Embrace your passions and dare to dream. You can do anything you put your mind to, and you have an endless amount of potential. You make the world a more beautiful place.

Love always,

Your mentor with a physical difference,

Crystal

Follow this journey on The Travelin’ Chick.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. 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 Share Your Story page for more about our submission guidelines.

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