Kerry D'Ortenzio

@kerry-dortenzio | contributor
Kerry D’Ortenzio is a mother of four girls, the youngest of whom has Aicardi Syndrome. She is a former teacher who loves being a mom and also loves writing to process anxieties and to remember how far we’ve come.  Sometimes she publishes her thoughts on their family blog: www.godsalive-reese.blogspot.com
Amanda Redhead

A Letter to Parents From a Pediatric Nurse

I’ve worked in pediatric nursing for more than a decade. This work has changed me more than anything else I have experienced in my life. My patients and their families have taught me more than I could have ever taught them. I am so grateful for this extraordinary life. For most of my career, I have worked with disabled and medically fragile children. During my shifts, I have given G-tube feedings, administered medications, held children while they seized, suctioned airways to ensure a child could continue to breathe, moved their limbs so they didn’t stiffen, coordinated all of the child’s therapies and all of the many other tasks needed simply to keep the child alive and comfortable for another day. At the end of my shift, I am always dripping with sweat and exhausted — ready to go home. I give a report to the you, the parents, at the end of my shift, and even though you may have already worked a full day at your own job or worked beside me with your child, you do not get to rest. You are the parent of a child who needs round-the-clock care, and there is not rest for you. I have seen your tired eyes and weary bodies day after day, and yet, you never give up on your child. In my career, I have sat beside parents while a doctor gave them the news that no parent should hear — that their child is not long for this world. I have held mothers while they wailed the most horrific, animalistic sound of grief after their child took their final breaths. I have placed a morgue tag around the toe of tiny bodies. I have waited until my shift is over to run to my car and desperately cry into my steering wheel with grief for my patient and their families. But, even though I was grieved, I got to go home to my own healthy children — you had to live the remainder of your life with empty arms. The parents I have worked with have often shrugged away my compliments at their strength and tireless work to benefit their children. They have reminded me that they did not ask for this life, but that they love their children enough to keep fighting. You may not have asked for this life, but you have taken it on with such grace and persistence, even in the face of steep odds. Your incredible strength inspires me in every area of my life. I have worked with children when new medications, therapies and treatments did not work, or worse, were detrimental to the child’s health. I have seen you agonize when doctors give you choices and you aren’t sure which to choose for your child. I have seen you search the internet with sleep-deprived eyes to find every bit of information you could before making your choice. You often know more about your child’s condition than any doctor or nurse ever could. I have held you while you wept when the choice you made did not turn out the way we had all hoped it would even though you were never, ever at fault for any treatment that failed. I may have administered the medication or treatment, but you were the one who held the emotional burden of the choice and lost sleep praying over the outcome. No matter how many people are involved in your child’s care, I know you carry the heavy, heavy weight and desperate wanting for your child’s health and well-being. I know this weight is carried 24 hours per day on your already weary shoulders, but you carry it with such grace that many do not notice. The very first family of a child with conditions I worked with told me to never take away their hope. That has become a mantra of sorts in my life — to “never give up hope” in my personal life and my work as a nurse. I have watched children walk, talk and achieve many things the doctors deemed impossible. I have seen children live for many years beyond what many specialists said was possible. I have seen children beat odds in extraordinary ways that is nothing short of a miracle. I know your child could not have achieved these miraculous things without you, their dedicated parents. The children I have worked with are some of the most extraordinary children on the planet. They inspire me beyond words. Over and over and over again these children — your children — have reminded me what a true miracle is. I am so thankful for them. Just as much so, I am thankful for you– the parents of these children. Many of you are so humble that you may shrug off my words, but I wish to say them anyway. You are amazing, strong, compassionate, incredible people. Your children would not have made it this far without you. You are the backbone of your child’s life. I see how absolutely, back-breakingly exhausted you are and how weary you are with the constant, unyielding stress of this life. I can only imagine how hard your life can be. I see you. You are not invisible in your struggle, although it must often feel that way. You are my heroes — cape-less but no less amazing. There are no words that can truly tell you how extraordinary I think you are. I know an open letter on the internet from a stranger is a cold thank you for you warriors. I know. It is simply too hard to continue to stand aside and not tell each and every one of you how amazing you are, and I have no other way to do so. I know how invisible and lonely you must feel at times. I want you to know that I see you. Many see you. We are inspired by you, each and every day. You make this world a better place, not only for your child but for all of us. You thank us, your nurses, at the end of every shift, and I wonder if we should be the ones thanking you — for giving us the extraordinary gift of getting to know your amazing children and their phenomenal parents. Thank you, from the very bottom of my grateful heart. All my love, Nurse Mandi Follow this journey on The Zen RN. Image via Thinkstock.

Mom Responds to Email Judging Her for Using Medical Marijuana

You wrote me an anonymous email. You said that my views on medical marijuana are “disturbing and disgusting.” You also added some other things about how God will judge me soon, but that “disturbing and disgusting” part… that hurt the most. I just wanted to say thank you. It took me a lot of time to sort this out. Because your words deeply wounded me. But in that quest for the healing of my heart, I realized I can thank you. And that has brought healing in itself. Thank you for cementing my resolve that I would do anything to help my daughter. I give her medical marijuana through her feeding tube three times a day. It is a strain that is high in Cannabidiol (CBD) and low in THC so she does not experience the high usually associated with the drug. Since we started it a year and a half ago, her seizures have been reduced by 75 percent. This is after seven years of watching her seize every day. After trying 10 different anti-epileptic drugs without great success. Imagine lots of tears and sleepless nights mixed in. Do I have one regret about medical marijuana? Not one. Would I run through a glass door if they said that would stop her seizures? Absolutely. Thinking about what could possibly be “ disturbing or disgusting” about finding a treatment that finally works has solidified my determination that I will do whatever it takes. No matter the cost, no matter the ridicule, I will do my best for my child. Aicardi syndrome has already taken too much from her. She deserves to have parents who will do whatever they can to give her the best life possible. Thank you for teaching me to stop the never-ending judgment reel in my mind. Each one of us has a constant line of judgments running in our minds. Well, I assume you do too. She shouldn’t be wearing that. How can they afford that car? She is rude. He is driving too slow. Their kids are out of control. That guy talks too much. It is always running… unless we consciously stop it. We have to renew our own minds. Our minds will go there on autopilot unless we decide not to let them. Because I was so mad at you for assuming you know what we have been through, I realized I too have no way to know the road each of these people has trudged to get this point, on this day, where I am judging them. I will renew my mind when that judgment reel starts playing and will choose to focus on the things in my own life that need refining before determining things that need to change in others, especially when I do not know the full story. Which is probably most of the time. Thank you for reminding me to be careful with my words. Words have power. They can either breathe life into another. Or they can suck it out. F ew neutral words exist. I had several days taken from me because of your anonymous words. You probably have not thought of me again. Words have power. I want to use them carefully. Thank you for teaching me the importance of saying “me too” as often as I can. When I read your email, my first ache came from feeling alone. You may not know this. Parenting a rare child can be lonely and isolating. In this case, all I could hear was… yep, you are the only one dealing with this. And everyone thinks you are disturbing and disgusting. She is just the only one willing to say it. Have you been there? I really needed to hear someone say, as author Brene Brown says, “the two most powerful words when we are in struggle, ‘me too.’” Showing up, coming alongside and just saying “me too” can heal lots of wounds. So to you, the author of the email, I say thanks. Thank you for making me stronger. Thank you for making me kinder, I hope. Thank you for making me gentler, I pray. Thank you for making more aware of the need for “me too.” You probably thought I’d fire back. But the beauty of raising a medically fragile child is… you get strong and with that, you learn to endure pain and keep moving forward. Onward, with more grace and love, hopefully for us all. Follow this journey on God’s Alive! The Mighty is asking the following: Write a thank-you letter to someone you never expected you’d thank. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Why I'm Thankful When I Find Poop on My Shirt

I looked down and saw poop on my shirt. Oh. Yes, it was on my jeans too. Too bad I was already in the car on the way to pick up my big kids from school. It was too late to turn around. So I just went with it. I’d changed the bedding, scrubbed the carpet and changed her clothes twice already. After the second “poop massacre” of the day, I felt tears creep into the corners of my eyes. Yep, I was feeling sorry for myself. This wasn’t how I wanted to spend the day. Then she smiled at me. And my perspective changed. I thought about the poop. I may be cleaning up poop for the rest of my life. But as long as the poop is here, that means she is here. Smiling. And as long as she is here, I will love taking care of her. I mean it. I love taking care of her. It was then I was reminded… a happy life is totally dependent upon perspective. A poopy shirt means my daughter is alive and well. Having to prepare meds five times a day means she is here. If she were gone, I promise you I would miss these things so much. It takes a daily attitude adjustment to get my perspective in its proper place. It got me thinking about other things in life — how they can jolt things into perspective too. My husband’s clothes left on the bathroom floor. It means he’s here. He’s fun, full of love and uninhibited. He balances me out so well. My child cannot walk. It means I can cuddle with her for the rest of my life. And she doesn’t wiggle to get away. My child cannot talk. I get to imagine all the beautiful things she would say to me if she had the words. And my imagination never includes sass. Hospital visits. They allow me to come in contact with incredibly loving, selfless compassionate people. And they allow me to watch God at work. Even the betrayal of a friend. It makes true, loyal friends look spectacular and makes me adore them even more. I’ll never let go of them. With almost every circumstance, there’s a blessed silver lining. It can be seen with a quick, intentional shift in perspective. It was no coincidence that after mulling over these thoughts, I read the following passage: “Bittersweet is the idea that in all things there is both something broken and something beautiful, that there is a sliver of lightness on even the darkest of nights, a shadow of hope in every heartbreak, and that rejoicing is no less rich when it contains a splinter of sadness. Bittersweet is the practice of believing that we really do need both the bitter and the sweet, and that a life of nothing but sweetness rots both your teeth and your soul. Bitter is what makes us strong, what forces us to push through, what helps us earn the lines on our faces and the calluses on our hands.  Sweet is nice enough, but bittersweet is beautiful, nuanced, full of depth and complexity.”  — “Savor” by Shauna Niequist Here’s something I never thought I’d say: I’m thankful for my poopy shirt. It gave me a shove back into place. It’s a place where I’m on an all-out search, despite the splinters of sadness, for all of the richness and beauty of raising a child with a disability. Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to community@themighty.com and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Thanks! Want to celebrate the human spirit? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .

Aicardi Syndrome: Doctor's Words of Comfort After Rare Diagnosis

She was vomiting and sleepy. The neurosurgeon suspected hydrocephalus and scheduled emergency surgery for the following day. My daughter, Reese, was 3 months old and had recently recovered from her first brain surgery shortly after birth. Another emergency surgery — my heart could barely stand it. I remember being terrified that morning. The surgeon walked in with his convenience store breakfast in hand. I couldn’t help but think, “You mean you haven’t already been awake for hours eating blueberries and flax seeds, looking over her scans and preparing yourself for this surgery?” My fear increased. Although the doctor said the surgery went perfectly, they allowed us back into the recovery room too soon. Reese’s eyes looked crazy, darting all over the room. She could not hold them in one spot for even a second. I frantically asked the nurse what was wrong. She assured me this was a normal part of the recovery process and that her eyes would normalize within hours. Terrifying moments. Terrifying days. Every parent of a child with serious medical issues knows what I am talking about. The beginning is the hardest — so many unknowns. Every medical term is new. The smell of the hospital is new. The wondering what our lives will be like from this point forward — terrifying and new. Reese had survived her second brain surgery in just three months. My husband, Mario, and I were still reeling. It was so much to digest in such a short time. In the middle of those three months, we had also received Reese’s diagnosis: Aicardi Syndrome, a rare genetic brain disorder. When I Googled it for the first time, all I remember seeing was “In Loving Memory” and “7 to 14 years.” We settled into the Pediatric ICU for recovery. The attending physician came in to meet Reese and make his initial assessment. We chatted for a moment and realized that we had a friend in common. He closed the door for privacy and as a respite from the noise of beeping machines and alarms. I remember him saying something like this: This child will change your life. She will change her siblings’ lives. They will grow up to be special people because they will learn early on that they are not the center of the universe. I see incredible siblings develop alongside children like Reese. She is a gift. I lost it right there. Tears of the blubbering kind. His words were like a salve to my burdened soul. He was kind. His words were loving. His words were meaningful. It was unexpected. He didn’t have to do that. Few moments in my life fall into this specific category. My perspective was changed. Because of this doctor’s words, my thinking shifted from how we could help our other children survive Reese’s illness to how Reese’s illness would actually shape them into the best versions of themselves. Because, after all — unselfish, authentic people are my favorite people. Kind words. Encouragement. Taking time out of a busy schedule. These were all gifts this ICU doctor gave us that day. His kindness changed my perspective. It changed my life. One of the greatest blessings of our journey with our medically fragile child has been experiencing the kindness of extraordinary people. I’ve become inspired to be more like them. Loving people just for the sake of loving — without receiving anything in return, without a sense of duty, just for the sake of loving — has the power to transform lives. It has transformed mine. The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Sign up for what we hope will be your favorite thing to read at night.

Katie Corkern

A Letter to Special Needs Siblings

Hey there, I heard you’re the sibling to a child with special needs, and I wanted to write you a letter explaining why you have a one-up on life. I know your life might seem hard or different from your friends, but trust me, you most definitely will be more prepared for this life than anyone else. Let me explain… I heard you deal with more than any child should. Your parents spend a lot of time away from you. You know they’re taking care of your sibling, possibly bringing him or her to the doctor. Maybe your sibling is admitted in the hospital often; your parents might be on the phone taking care of insurance business or even physically caring for your sibling. I know, my friend. You see this more often than not. You see the love your parents have for your special sibling, and it’s being embedded into your heart. You see the patience they exhibit when caring for him or her, and it’s being buried into your soul. You see that your parents never stop trying to get what your sibling needs, and it’s being ingrained into your mind. You see your parents exhaust themselves so your sibling and you are well taken care of, and you’re learning from this. You may not know it, but all of these little things are teaching you traits of how to be an amazing person. I’m certain that being the sibling to a child with different needs is a struggle. I know you have those moments where your heart stings with jealousy, where you’re worried sick over your sibling. I know you have those moments when you get mad because you can’t go to all the birthday parties you want to. All of those times are totally understandable. You have a right to be upset every now and then, but I can bet that you can think of some pretty cool things you have in your household that your friends don’t. How about all the cool equipment your sibling has, huh? I know you’ve climbed into that wheelchair or played with his super cool assistive technology toys. How about getting to see your sibling reach a milestone and that proud feeling that overcomes your body? You get to experience a friendship like no other. Your sibling completely and utterly trusts and loves you with a love that can penetrate the coldest heart. They look at you with those beautiful eyes and know you’re there for them no matter what. The bond you have is indescribable. You’re their sibling, their friend and their protector. Your sibling might not speak verbally, but we both know your hearts together carry on conversations us adults could never possibly understand.  And I tell you what, we’re so extremely jealous. Did you know your parents watch you and your sibling’s interactions on a daily basis and their heart literally wants to burst out of their body with pride and love? They see everything you do for your brother or sister. They notice when you walk by and give them a quick kiss, stroke their hair or give them a hello. Your mom and dad love to witness you sticking up for your special sibling or when you go out of your way to make sure he or she is included in everything. They quietly observe you as you help with therapies, put oxygen masks back in place and hold hands during tests or doctor visits. Your parents recognize every time you perch yourself on the counter to help prep medicines or bring them a diaper, a syringe or whatever else they need. You do such an amazing job helping your parents. It surely takes a wonderful little boy or girl to do what you do on a daily basis. I’m sure they tell you thank you, but sometimes if they don’t just know they are beyond thankful for you. But most important of all, my dear one, the reason you are going to rock this life: You know true love, you know true heartache and you know what’s truly important. You have lived a life that takes a strong heart and a strong mind. You will mature much faster than your schoolmates (don’t be too hard on them), you’ll exhibit compassion that astounds others, you’ll know more about healthcare than 95 percent of adults you pass on the street, and you will most definitely have a wicked sense of humor that will enable you to keep life joyful no matter what. When you were introduced to your sibling with complex needs for the first time, that moment in time is pinned in the stars, for it was then that your destiny was determined. You will be an awesome human being and you’re going to change lives for the better… all because you were the sibling of a child with special needs. Rock on, my brave friend. All my love, The momma of a child like you and your special sibling This post first appeared on Mommies of Miracles.

Katie Corkern

A Letter to Special Needs Siblings

Hey there, I heard you’re the sibling to a child with special needs, and I wanted to write you a letter explaining why you have a one-up on life. I know your life might seem hard or different from your friends, but trust me, you most definitely will be more prepared for this life than anyone else. Let me explain… I heard you deal with more than any child should. Your parents spend a lot of time away from you. You know they’re taking care of your sibling, possibly bringing him or her to the doctor. Maybe your sibling is admitted in the hospital often; your parents might be on the phone taking care of insurance business or even physically caring for your sibling. I know, my friend. You see this more often than not. You see the love your parents have for your special sibling, and it’s being embedded into your heart. You see the patience they exhibit when caring for him or her, and it’s being buried into your soul. You see that your parents never stop trying to get what your sibling needs, and it’s being ingrained into your mind. You see your parents exhaust themselves so your sibling and you are well taken care of, and you’re learning from this. You may not know it, but all of these little things are teaching you traits of how to be an amazing person. I’m certain that being the sibling to a child with different needs is a struggle. I know you have those moments where your heart stings with jealousy, where you’re worried sick over your sibling. I know you have those moments when you get mad because you can’t go to all the birthday parties you want to. All of those times are totally understandable. You have a right to be upset every now and then, but I can bet that you can think of some pretty cool things you have in your household that your friends don’t. How about all the cool equipment your sibling has, huh? I know you’ve climbed into that wheelchair or played with his super cool assistive technology toys. How about getting to see your sibling reach a milestone and that proud feeling that overcomes your body? You get to experience a friendship like no other. Your sibling completely and utterly trusts and loves you with a love that can penetrate the coldest heart. They look at you with those beautiful eyes and know you’re there for them no matter what. The bond you have is indescribable. You’re their sibling, their friend and their protector. Your sibling might not speak verbally, but we both know your hearts together carry on conversations us adults could never possibly understand.  And I tell you what, we’re so extremely jealous. Did you know your parents watch you and your sibling’s interactions on a daily basis and their heart literally wants to burst out of their body with pride and love? They see everything you do for your brother or sister. They notice when you walk by and give them a quick kiss, stroke their hair or give them a hello. Your mom and dad love to witness you sticking up for your special sibling or when you go out of your way to make sure he or she is included in everything. They quietly observe you as you help with therapies, put oxygen masks back in place and hold hands during tests or doctor visits. Your parents recognize every time you perch yourself on the counter to help prep medicines or bring them a diaper, a syringe or whatever else they need. You do such an amazing job helping your parents. It surely takes a wonderful little boy or girl to do what you do on a daily basis. I’m sure they tell you thank you, but sometimes if they don’t just know they are beyond thankful for you. But most important of all, my dear one, the reason you are going to rock this life: You know true love, you know true heartache and you know what’s truly important. You have lived a life that takes a strong heart and a strong mind. You will mature much faster than your schoolmates (don’t be too hard on them), you’ll exhibit compassion that astounds others, you’ll know more about healthcare than 95 percent of adults you pass on the street, and you will most definitely have a wicked sense of humor that will enable you to keep life joyful no matter what. When you were introduced to your sibling with complex needs for the first time, that moment in time is pinned in the stars, for it was then that your destiny was determined. You will be an awesome human being and you’re going to change lives for the better… all because you were the sibling of a child with special needs. Rock on, my brave friend. All my love, The momma of a child like you and your special sibling This post first appeared on Mommies of Miracles.

Katie Corkern

A Letter to Special Needs Siblings

Hey there, I heard you’re the sibling to a child with special needs, and I wanted to write you a letter explaining why you have a one-up on life. I know your life might seem hard or different from your friends, but trust me, you most definitely will be more prepared for this life than anyone else. Let me explain… I heard you deal with more than any child should. Your parents spend a lot of time away from you. You know they’re taking care of your sibling, possibly bringing him or her to the doctor. Maybe your sibling is admitted in the hospital often; your parents might be on the phone taking care of insurance business or even physically caring for your sibling. I know, my friend. You see this more often than not. You see the love your parents have for your special sibling, and it’s being embedded into your heart. You see the patience they exhibit when caring for him or her, and it’s being buried into your soul. You see that your parents never stop trying to get what your sibling needs, and it’s being ingrained into your mind. You see your parents exhaust themselves so your sibling and you are well taken care of, and you’re learning from this. You may not know it, but all of these little things are teaching you traits of how to be an amazing person. I’m certain that being the sibling to a child with different needs is a struggle. I know you have those moments where your heart stings with jealousy, where you’re worried sick over your sibling. I know you have those moments when you get mad because you can’t go to all the birthday parties you want to. All of those times are totally understandable. You have a right to be upset every now and then, but I can bet that you can think of some pretty cool things you have in your household that your friends don’t. How about all the cool equipment your sibling has, huh? I know you’ve climbed into that wheelchair or played with his super cool assistive technology toys. How about getting to see your sibling reach a milestone and that proud feeling that overcomes your body? You get to experience a friendship like no other. Your sibling completely and utterly trusts and loves you with a love that can penetrate the coldest heart. They look at you with those beautiful eyes and know you’re there for them no matter what. The bond you have is indescribable. You’re their sibling, their friend and their protector. Your sibling might not speak verbally, but we both know your hearts together carry on conversations us adults could never possibly understand.  And I tell you what, we’re so extremely jealous. Did you know your parents watch you and your sibling’s interactions on a daily basis and their heart literally wants to burst out of their body with pride and love? They see everything you do for your brother or sister. They notice when you walk by and give them a quick kiss, stroke their hair or give them a hello. Your mom and dad love to witness you sticking up for your special sibling or when you go out of your way to make sure he or she is included in everything. They quietly observe you as you help with therapies, put oxygen masks back in place and hold hands during tests or doctor visits. Your parents recognize every time you perch yourself on the counter to help prep medicines or bring them a diaper, a syringe or whatever else they need. You do such an amazing job helping your parents. It surely takes a wonderful little boy or girl to do what you do on a daily basis. I’m sure they tell you thank you, but sometimes if they don’t just know they are beyond thankful for you. But most important of all, my dear one, the reason you are going to rock this life: You know true love, you know true heartache and you know what’s truly important. You have lived a life that takes a strong heart and a strong mind. You will mature much faster than your schoolmates (don’t be too hard on them), you’ll exhibit compassion that astounds others, you’ll know more about healthcare than 95 percent of adults you pass on the street, and you will most definitely have a wicked sense of humor that will enable you to keep life joyful no matter what. When you were introduced to your sibling with complex needs for the first time, that moment in time is pinned in the stars, for it was then that your destiny was determined. You will be an awesome human being and you’re going to change lives for the better… all because you were the sibling of a child with special needs. Rock on, my brave friend. All my love, The momma of a child like you and your special sibling This post first appeared on Mommies of Miracles.