Warburg Micro syndrome

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    Lori Burke

    When People Ask, 'How Could You Let Them Live Like That?'

    As he said goodbye, it hit me. A son returning to college. It’s a common occurrence. But when James, my younger son, leaned over and said “See you in a couple months,” to my daughter and other son, MaryEllen and Kevin, I began to wonder. What must it feel like for MaryEllen and Kevin to know their siblings are grown and leaving home to have lives of their own? Do they feel slighted? Are they sad they don’t get to experience an independent life outside of our home? I hadn’t thought about this since they were young, when it was too far off to worry about. Then, as quick as those thoughts passed, others began to fill my head, comments I have heard and seen regarding MaryEllen and Kevin throughout their lives. “I would never want to live like that.” “How could you let them live like that?” I don’t often feel sad when I think about MaryEllen and Kevin. Times like this day, though, brought these uneasy feelings to the forefront. What is a good quality of life, and do they have it? From my perspective, I think they do. They are loved beyond measure, and they know it. But is that all it takes to have a good quality of life? My other two “typical” children are loved beyond measure as well. As I contemplated the depth of these questions, I came to this: A good quality of life is not traveling or making lots of money or doing everything and anything you ever wanted to do; it’s doing what makes you happy. We are all different. What brings me joy may not bring the same for you. MaryEllen and Kevin are surrounded by those who love them. For some, maybe living “a life like that” (whatever that means) wouldn’t be a good quality of life. But from MaryEllen’s and Kevin’s perspectives, maybe our lives are less than ideal. I think I have discovered the secret. A life well-lived is experiencing unconditional love all the time. A life well-lived is smiling and being able to feel that smile from deep within. A life well-lived is being able to savor all the good life has to offer while disregarding the bad. Just brilliant, isn’t it? Follow this journey on The Heartful Mom.

    Lori Burke

    To the Macy’s Staffer Who Gave My Daughter the Best Birthday Ever

    When MaryEllen and Kevin were babies, we were always told that their lives would be short — less than two years — so since then, birthdays in our house are a big deal. We celebrate each and every one fully. This week, MaryEllen turned 29, and I don’t think we will ever be able to top it. MaryEllen loves to shop so we spend every birthday doing just that. We have a lovely mall nearby, and we take our time going from store to store and department to department, picking out the softest, most beautiful things. This year was no different. At first. It started like every other birthday shopping spree morning. We fussed over MaryEllen’s hair and outfit. Everything had to be just so for our fun outing. The excitement was building as we placed a “Happy Birthday” balloon on the back of her wheelchair. We gathered all the medical equipment — suction, oxygen, pulse oximeter and ventilator for both kids — and we were off. We sang “Happy Birthday” to MaryEllen in the van on the way. By the time we got to the mall, my giddy girl was ready for some fun. Our first stop this year? Macy’s! I thought the experience of a large department store would be so much fun. We usually fuss over every item as we place the fabric against MaryEllen’s cheek so she can feel the softness. We take our time and have lots of fun. As we entered the store through the cosmetics area, we noticed a red carpet leading our way in. Of course, we made a big deal out of that as well. “MaryEllen! Do you believe they put out the red carpet for us?” I said excitedly. MaryEllen replied with a grin as big as the sky. Suddenly, out of nowhere, we were approached by an angel on earth. “It’s your birthday?” she said. “Well, come over here. I have something for you.” Her excitement and joy were almost equal to ours. It was a lovely lady from the Lancôme section of the store. We followed her as she led us to her area. As we entered, MaryEllen was surrounded by all the Lancôme ladies. “It’s her birthday!” As she leaned the other way to get a little gift, all the other ladies began to fuss over MaryEllen. “It’s your birthday?” “Happy birthday!” “Wow, how old are you?” It was a birthday commotion. The lovely lady, Thea, handed MaryEllen a beautiful purple Lancôme cosmetic bag adorned with jewels. “Happy birthday, MaryEllen!” I was stunned. We were into our shopping spree less than five minutes. In our “wheelchair” world, this is a highly unusual occurrence. No one ever approaches us with a smile. And all that joy! This was genuine, from the heart and act of love and kindness. I thanked Thea immensely as we parted ways. As I walked away, it came to me. I headed back towards the Lancôme counter and said, “May I take a picture of you with the kids? No one has ever done this for us, and I would love to tell Macy’s how wonderful you all are.” “Really?” Thea said. She couldn’t believe that this act of kindness was not the norm. “Of course!” Thea and Tracy, one of the other lovely ladies who gushed over my birthday girl, surrounded MaryEllen and Kevin without a second thought for the perfect photo. Again, another out-of-the-norm occurrence. People are usually so uncomfortable around wheelchairs that they will never get in close. I thanked them again from the bottom of my heart as we parted ways again to continue our fun day. And it was! After returning home, I couldn’t wait to tell Macy’s about our magical experience. I quickly wrote a note on their Facebook page. Look how it exploded! People from all over the world began to comment. Thea and all the girls at the Lancôme department at Macy’s began to receive recognition. As it should be. And MaryEllen began receiving birthday wishes, too. Thousands and thousands of lovely birthday wishes for my sweet girl. I am filled with gratitude for this outpouring of love and kindness. It started with you, Thea. Thank you. Thank you from the bottom of my heart for being the catalyst for all of this kindness and love sent our way. This was truly the best (and biggest!) birthday ever for MaryEllen, and I am forever in your debt. You have touched my heart in a big way, sweet lady. It was a red carpet day like no other! Follow this journey on The Heartful Mom. The Mighty is asking the following: Tell us about a time someone in your community went above and beyond for you or your loved one with special needs. 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.

    Macy's Clerks Make Woman's Birthday Extra Special With 'Small' Gesture

    A young woman’s 29th birthday became all the more special on Thursday thanks to a few sales associates at a Macy’s in Lake Grove, New York. Lori Burke took her son and daughter, MaryEllen, both of whom have an extremely rare genetic disorder called Warburg Micro syndrome, shopping for MaryEllen’s birthday. An employee named Thea immediately approached the trio after noticing a birthday balloon attached to MaryEllen’s wheelchair. She then escorted them to the Lancome makeup section, where several other sales associates began grabbing merchandise as birthday gifts. Image courtesy of Lori Burke Lori Burke told The Mighty that birthdays have always been a momentous occasion for the family. When her children were infants, she was told to not expect them to live past the age of 2. Now every birthday gets celebrated “in a big way.” Having others join in on the celebration only made the experience even sweeter. Burke explained why the small moment was actually not-so-small on Facebook: You see, whenever we are out in public, people normally don’t come towards us, they usually shy away. They usually give us a quick look and look away. We have been shopping many, many times in MaryEllen’s 29 years and no one has ever approached us with such excitement and joy! Thank you to your amazing employees for making this birthday one to never forget. It was a day that MaryEllen was noticed for just being a birthday girl, not a girl in a wheelchair that should be avoided. So, Thea and all the Lancome area girls at Lake Grove Macy’s, keep doing what you do because your joy is contagious! And thank you for making MaryEllen feel so special on her birthday. “I can’t say enough about the lovely Macy’s associates,” Burke added in an email to The Mighty. “To go above and beyond and approach us, mere strangers, was something I will never forget. It was a small gesture for them, but so much more to us.” Be sure to visit Burke’s blog, The Heartful Mom, for more stories about her family.

    Lori Burke

    The Hidden Gift Wrapped in a Fatal Disease

    It wasn’t long after my children, MaryEllen and Kevin, were born that we got the devastating news. Their condition, although unknown, was probably going to be life limiting. Their lack of development, coupled with seizures and failure to thrive, led doctors to believe that whatever the kids had, it wasn’t good. My heart was broken. How could this happen to my beautiful babies? How could I continue to be a good mom when all I could think about was my children dying? This couldn’t be happening. Every day brought more bad news, and every doctor visit brought another horrible reality. Our sweet babies had a combination of defects that all pointed towards deterioration and death. “Take them home and love them,” we were told. Those words struck me like lightning. Our storm was a big one. I was breathless and powerless. Then, I changed. It wasn’t overnight, but slowly I realized what these words really meant. My thoughts were powerful. “Oh yeah, death? You will not make me crumble and fall to my knees! I will love my kids. And then I will love them some more.” My perspective about life changed when I was faced with less time with my babies. Suddenly, little things took on meaning. I loved the feeling of Kevin’s cheek against mine. His skin was so marshmallowy soft. MaryEllen’s hands were so dainty and tiny. I felt like I was her protector when they were snuggled in mine. Looking into their eyes, I could feel their purity and vulnerability. I placed each little meaningful moment in a beautifully wrapped gift in my memory bank. I began to see these gifts every day. I felt like a warrior mom — and bam! — we had another day. And I gently placed another pile of beautifully wrapped gifts where I would always have them. We were staring death in the face, and we were winning. Winning because each day we were given, we conquered with love and appreciation. We weren’t curled up in a ball waiting for the terrible day. We were smiling, loving and making happy memories. So many people don’t get that opportunity. They lose a loved one suddenly without warning and don’t get to experience the gift of “today” like we do. Their memory banks weren’t tended to and their gifts were not wrapped gently and lovingly. And consciously. Use the gift this holiday season. Every day, slow down a little and look, hear and feel like you have never done before. Tell someone you love them and mean it. Feel someone’s hand in yours. Remember the feeling of that hug. The smells. The look in their eyes. Wrap it all up and place it delicately, like a treasured piece of china, on your shelf of memories. Pay attention to the small things and consciously remember every detail. We have been blessed. Our babies grew into their 20s and are still blessing us with their small and astounding gifts every day. Kevin’s cheeks still feel marshmallowy soft and MaryEllen’s dainty and fragile hands have given me so much strength. Their eyes are filled with wisdom, yet still have the trusting vulnerability they’ve always had. We are not meant to skip through our lives, barely noticing the things that matter. Every day we have means we have one less. After all, we all have a fatal disease. It’s called life. Think about it. Follow this journey on The Heartful Mom. 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 community@themighty.com. 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.

    Lori Burke

    Response to the ‘The View’ Co-Host's Comments About Nurses

    Joy Behar and Michelle Collins, co-hosts of “The View,” recently caused a stir with their comments about Kelley Johnson, a registered nurse and the Miss Colorado contestant in The Miss America Pageant. (You can watch a YouTube clip of the show here.) This is for you, Joy Behar and Michelle Collins. Let me enlighten you about nurses. My children have required nursing care their entire lives. They are 28 and 27 years old and have far outlived their bleak prognosis thanks to dedicated nurses. Who was it that calmed this frightened mother while her son’s temperature climbed to 105? His little body was shaking and seizing and his breathing was erratic. While caring for him, she reassured me. It was a nurse. Who was it that cared for my little boy in the back of our van while I drove to the hospital? I was a wreck that day, you know. He wasn’t breathing well and his vital signs were not good. It was a nurse. Who was it that saw me in the halls of the Pediatric ICU looking lost and hopeless? She went out of her way that day to get me a snack from the snack machine. It was a gesture I will never forget. She offered me a snack and her heart. It was a nurse. Who saw my daughter lying in bed after an EEG and came in to give her the best hair wash ever? Nurses are stretched so thin these days, and she took the time to get that glue out of every strand of MaryEllen’s thick and wavy hair. I knew by the look on MaryEllen’s face that it really was the best hair wash ever. It was a nurse. Who stayed with my husband and me while our son was evaluated by the ICU team? Our little boy needed IVs and central lines and medication to keep his blood pressure up (in other words, to stay alive), and she stayed with us to explain, reassure and most of all comfort fearful parents. She could have easily left us alone in the hallway that night, yet instead of going home at the end of her shift, she stayed with us until our little boy was stable. It was a nurse. Who did I call for in the ICU when MaryEllen’s pulse ox was dropping or Kevin’s body was ravaged with seizures? It was a nurse. Who walks into our home willing to care for my children and doesn’t run the other way? They see my children first, then the medical chaos of the room. I know how overwhelming it looks, believe me! It’s nurses. Who ran into our room in the pediatric ICU while my daughter was crashing, and as if it was nothing, saved her life? Time and time again? It was nurses, Joy Behar. Nurses. I could go on and on. Without nurses, my children wouldn’t be here. Plain and simple. Nurses are more than just someone wearing a “doctor’s stethoscope.” Take a walk through a pediatric ICU and see for yourselves. Nurses are the heart and soul of caregiving. It takes a special person to be a nurse. Can you say that about your profession, Michelle Collins and Joy Behar? Follow this journey on The Heartful Mom.

    Lori Burke

    When I Wrote to Kathie Lee About Finding Toys for My Blind Children

    “Did I hear that correctly?” I thought. I turned the television volume up and paid attention. “So, these toys would be appropriate for blind children?” I did hear correctly. Astonished, I sat down and watched. It was December 1989. Between “Sesame Street” and Nickelodeon, and diapers and bottles, I always tried to get my “Live! With Regis and Kathie Lee” fix each morning. I was fortunate this day, my 3-year-old daughter, Katie, was engrossed in her Barbies. Christmas was fast approaching and this segment focused on fun new toys for kids. “Toys for blind children,” I thought to myself excitedly. I couldn’t believe it! In those days, there were no special guides for toy-buying for children with special needs. I was on my own. My daughter, MaryEllen, used her hands but needed assistance. My son, Kevin, wasn’t able to hold anything. Both children were blind. They couldn’t sit up or stand, even at 1 and 2 years old. Buying toys for them was not easy. I remember shopping late at night when the toy stores were not as crowded and going aisle by aisle studying and feeling everything that could help my kids enjoy a toy. I never thought about this with Katie. As long as it was a Barbie and she had shoes and clothes, Katie was happy. We had an over abundance of stuffed animals for MaryEllen and Kevin. That was the easy way out. That and clothes. I could fill a large room with all the plush and cute outfits they had. But I wanted toys and fun for them, too! While shopping at toy stores, slowly examining and feeling every toy took hours. I had to find a toy that made noise and was easy to activate. There were no iPads, no special switches and no toy experts to ask. Maybe a mini electronic piano keyboard would work. I felt the keys and decided that the pressure needed to make a sound was minimal. I could put that by their feet and when they kicked, maybe it would become purposeful and they could make music. That could be fun. I painstakingly went aisle by aisle and toy by toy testing and feeling and pushing. Sadly, every toy that fit well into their needs was made for a newborn. There were a million toys that had jingly sounds that were light and airy and stuffed into a soft shell. The colors were pale. They had pink bunnies that chimed, monkeys that crinkled, and ducks that played lullabies. How many little, music-playing, pastel baby toys could I buy? I always left the store sad for me and sad for my children. These days, toy shopping for children with special needs is different. I can easily look on Amazon or search for something with Google. I can log on to Facebook and ask in my many special needs groups for toy recommendations. I can search for iPad apps for blind children. There are so many places to look online. It seems so easy! In 1989, buying toys for children with special needs was difficult and exhausting. It wasn’t exciting and fun like it should be. I never thought, “This is going to be great fun for MaryEllen and Kevin!” Instead, I hoped that what I bought would bring a smile. Anxiety-ridden toy purchasing is such an irony! Fed up with my toy-buying failures, I decided to reach out with a handwritten letter. Every morning, after feeding, bathing and loving my littles, I enjoyed my tea with Kathie Lee. For one hour each weekday (if I was lucky!), I watched and enjoyed how she and Regis bantered back and forth. She always seemed so pleasant and fun. I couldn’t communicate by email or Twitter or Facebook, or even the Internet. They didn’t exist yet! I hand-wrote that I enjoyed my mornings so much when I watched the show, and I asked if she would be able to do a segment about toys for blind children. Maybe they could have a toy expert on the show that could help me and many other discouraged moms. It wasn’t long before I received a reply. Kathie Lee sent an autographed picture and note. I was thrilled! I hoped it was really from her and not an assistant. I didn’t know how famous people handled their mail. In the note, Kathie Lee thanked me for my suggestions and said she hoped to do it soon. The autographed photo of Kathie Lee Gifford says, “To Lorraine & Family — God Bless You All! You especially MaryEllen & Kevin. Kathie Lee Gifford” Kathie Lee’s note says: “Thank you for your suggestion, Lorraine — I hope we can do it soon. Kathie Lee” It was only weeks later that the segment aired. I had totally reached the real Kathie Lee! It didn’t even matter what toys were discussed. Together, we opened the avenue for the discussion! It was just recently, as I heard the sad news of her husband Frank’s passing, that I recalled this story. To me, Kathie Lee always exuded sincerity, and I was always so grateful for her sunny disposition during those early days as a special needs mom. I needed that! Thanks, Kathie Lee, and between you and me, I think it was us who got the ball rolling on the differently-abled toy catalogs and guides that are so popular now! Follow this journey on The Heartful Mom. The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. 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 Share Your Story page for more about our submission guidelines.

    Lori Burke

    Why Special Needs Moms Shouldn’t Feel Guilty About Their ‘Typical’ Children

    Do siblings of children with special needs turn out OK? I’ve asked myself that question many times in the last 28 years. In our family, there’s certainly enough love to go around, but do Katie and James, our healthy children, feel slighted and left out? Will they move far away as adults to get away from all the medical chaos that goes on at our house daily? Or will they feel overwhelming guilt because they were the healthy ones? Maybe they will act out to get attention. After all, negative attention is better than no attention. All of these questions can go through the minds of parents of children with differing needs. Maybe they will be on the other end of the spectrum and be loving and compassionate caretakers of their siblings. Or maybe they will just quietly accept all the attention their siblings need. While this sounds great on the surface, I wouldn’t want my “typical” kids to ever experience caregiver stress or quiet depression. I know those feelings too well. Juggling different needs within a family can be hard. These days, we go on vacation without MaryEllen and Kevin, whose medical needs are far too complex to care for away from home. While the rational side of me knows that they are much more comfortable and happy, the guilty mom side of me nags at me constantly. How could I go away and have fun with half of my children at home? On the other side of the coin, how can I ever be forgiven for missing softball games, baseball games, class trips and college tours for Katie and James? No matter how much I think about it and try to do my best, it always ends up the same. I feel guilty. A mother is supposed to be there for all her children. I constantly ask myself, “Did I do enough?” Would Katie and James’ childhood memories be ambulances and hospitals or Little League and ice cream? Would MaryEllen and Kevin remember Mommy always running out with the other kids? Will everyone grow up and be OK? Do “normal” moms have the same guilty thoughts? Maybe it’s just a mom thing. Through the years, I heard over and over, “You never have time for me!” and “How come you’re always taking care of MaryEllen and Kevin and not me?” What are their thoughts now that they’re adults? Do Katie and James feel slighted in any way? I was surprised by their similar answers. They didn’t mention ambulances or hospitals at all. Although they may have missed out on some things, they’re happy overall because they have compassion and empathy towards people with disabilities. And because they were exposed to so much growing up, they feel better prepared to handle overwhelming situations. As relieved as I was with their replies, I do feel guilty about missing important events throughout their lives. But looking back, I can say that a solid, loving foundation for all the kids does work. It may not feel like it 99 percent of the time, but as everyone grows up and matures, I believe children with siblings who have special needs do fare well. Better than I ever imagined, even. So moms, let’s unite and not feel guilty. Don’t waste time wondering if you are ruining your kids forever. They will be OK. I promise. How do I know? Here’s a video of James reminding me: Follow this journey on The Heartful Mom. The Mighty is asking the following: Tell us about a time someone went out of his or her way to make you and/or your child feel included or not included. 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 “ Share Your Story ” page for more about our submission guidelines.

    Lori Burke

    10 Tips for the Special Needs Parents Who Just Joined the Club

    Dear New Parents, Hi! Nice to meet you. Welcome to the club! I’ve been here for almost 30 years. Although you never planned on joining, we welcome you with love, empathy and a heartfelt hug. A ny thoughts or feelings you may have, we probably understand. On this journey you might lose friends, but here you will gain a family. We will always be by your side. I’ve developed this handy list for you. Feel free to add to it as you see fit. Someday, you’ll be the one helping a scared, new parent. 1. Take a deep breath. Every now and then you will feel overwhelmed. A few deep breaths will give you some time to recenter and start fresh. When you don’t feel like doing this, it’s probably when you need it most. 2. Set aside time every day for fun. All children need down time, and so do moms and dads. You will be very busy with therapies, doctor appointments and everything developmental, but take time to relax and have fun. Do this every day – no pressure, just fun. And don’t sneak in anything educational! 3. It’s OK to have cereal for dinner. It happens. One thing leads to another and suddenly it’s past dinnertime. Some cereals are vitamin fortified, you know, so go for it! Don’t feel guilty and please, don’t throw in vegetables! Think of it this way — it’s better than fast food! Enjoy every crunchy spoonful. 4. Don’t feel guilty. This is a hard one. All parents feel guilty sometimes, but having a child with special needs seems to increases this probability. The truth is, there’s no guidebook for your little one. You’re doing your best. When you feel that guilt feeling creeping in, know this: Nobody’s perfect and nobody will do a better job than you. 5. Don’t live in “What if” world. “What if he could talk?” “What if she never walks?” “What if, what if, what if?” Believe me, nothing comes of this. Take one day at a time and keep doing what you’re doing, which leads me to the next tip… 6. Take one day at a time. This is very important. Don’t spend hours and days thinking about the future. Each day prepares you for the next, and whatever you might be worrying about today will probably never happen. Instead, go hug that beautiful little one and enjoy this moment. Go, now! 7. Laugh. C’mon. There’s always something to laugh about. While frequently things will happen that are not funny in the moment, you can sometimes look back and laugh. Well, look back now! If something is happening now you’ll laugh about later, why wait? It’ll make your days so much more fun! 8. It’s OK to have a messy house. Kids only stay little for a short while. Before you know it, you’ll have all the time in the world to clean up the house. Also, refer back to #4. 9. Don’t take things personally. Here’s the truth. People are going to say things or do things related to your child that will make you sad and angry. While it’s hard not to react, their behavior is a reflection of them — it has nothing to do with your baby. Stand tall, Mama! Also know there are many, many more people out there who are really nice and genuinely care. 10. Pat yourself on the back. Do this every day. You’re doing a great job. And don’t forget: When you look back, you’ll want to remember the good stuff. Now is your chance to create it. With love, A Mom Who’s Been Through It A version of this post originally appeared on The Heartful Mom. 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 .

    Lori Burke

    Parenting Multiple Children When Only One Has Special Needs

    I’ve always imagined our healthy kids would have such a connection to their siblings, they’d want to dedicate their lives to helping people like them. “He’ll be a doctor because of MaryEllen and Kevin!” “She’s going to discover the cure!” That’s what always happens, right? We provide the loving foundation, and our kids magically want to become doctors, therapists or geneticists and will live happily ever after. Walt Disney Studios will buy the movie rights, and kids everywhere will be inspired by their efforts. Well, that’s not what happens. The reality is while we parents take care of the immediate needs of the sick ones, siblings of special needs children tend to be put on the back burner. Once in Disney World, my daughter, Katie, was so excited to go to Epcot. She loved it more than anywhere else in the world, and we were finally going to spend an entire day there. Unfortunately, Kevin developed a fever and seizures less than 30 minutes after we arrived. “We’re leaving and not coming back?” she said, as we were whisked away in an ambulance. I will never forget that terrible feeling of letting her down. Or the time Kevin had a fractured femur and we celebrated Katie’s birthday in the pediatric wing of the hospital. Despite our efforts to make it a good birthday (We even snuck in the candles!), we failed miserably. And so it goes, juggling the needs of many while tending to the pressing needs of few. Did we do a good job as parents? It seems like we could have done better. “Welcome to Holland” by Emily Perl Kingsley equates the wonders of Italy (having a healthy child), with the disappointment of unexpectedly landing in Holland (having a child with special needs). She goes on to say Holland isn’t so bad, it’s just different. Well, what happens to the families who live in Italy and Holland? Both places are beautiful and perfectly livable, but jumping from one country to the other is tiring! Depending on who you ask, we end up spending way too much time in t he other country and someone always feels slighted. I propose we families, the ones with all kinds of children, pick up and just move to Switzerland. It’s half way between Italy and Holland and it has chocolate! It would be a wonderful coexistence of families, and healthy and special needs children would just be…children. What a concept! A version of this post originally appeared on The Heartful Mom. 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 .

    Lori Burke

    What I Wish Doctors Wouldn't Say About My Medically Complex Child

    After seeing at least 100 doctors for my kids in the last 28 years, there are two things that stand out: the really good ones and the really bad ones. Please, if you are a doctor and reading this, know that your patients (and their parents) live with their disease 24 hours a day. They know it inside and out, from morning ’til night, every day of the year. It astonishes me when I think back and remember what doctors have said to us in the past. Here’s the highlight reel: 1. “Mrs. Burke, I need a break.” Please, don’t say this to an overstressed, worried mom! This is the last place we want to be, exposing ourselves to all the germs your wonderful office has to offer. Instead, treat us with love and compassion. After all, we are only doing our best. Did I mention we are overstressed and worried? 2. “You should take care of the other 75 percent of your family.” What does that mean? Should our sick, needy newborn live somewhere else because we are busy taking care of everyone else? That’s not why we have children. Please acknowledge our situation. Support would also help a lot. 3. “Children like this don’t live at home.” Well, since my children live at home, I can say, yes, they do. Children “like this” enjoy life and want to be with their moms and dads. And we want to be with them. We are a family, so please respect our decision to take care of our kids as we see fit. 4. “Stop worrying, they’re fine.” Please don’t minimize my role as my children’s mother. A blind 1-year-old who is not holding her head up, rolling or sitting is not fine. A baby who has had no head growth in seven months is not fine. A toddler who loses consciousness and ends up in PICU for three weeks is not fine. Understand that a worried mom knows her child. It’s not easy doing what we do, even on a good day. And to the doctors that treat us with love and compassion, thank you. Thank you from the bottom of my heart for being there when we need you and for saying the right things at the right time. Thank you for understanding. Thank you for seeing our children as people, not disorders. Thank you for sitting with us in a cold hospital corridor while we pray for our child’s life. We couldn’t do what we do without you. A version of this post originally appeared on The Heartful Mom. Want to help end the stigma around disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .