Chromosome 12, Microdeletion

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Chromosome 12, Microdeletion
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    When My Medically Fragile Son Impressed a Nurse by Asking for a Pillow

    My son — B-man or Bucky, depending on his mood — had just awoken from a six-hour surgery. The surgeon came out and gave us an adrenaline-fueled recap. I will never tire of hearing this part: “He’s going to be fine. Everything is going to be OK.” That pervasive melty feeling in my legs started to fade. The doctor told us only one person could go in, so I pushed my husband out of the way. Me. I’ll do it! I had not seen my son since the night before and I was pretty darn excited to say “Hi, what’s up dude? Congratulations on your fifth successful surgery!” I followed the volunteer down the hall. In the past, Bucky always looked a bit angry when reentering the world after a general anesthetic. This time he was a seasoned veteran: already conscious and breathing on his own. He started ordering the nurses around. “Two pillows!” This phrase, B-man’s description of his favorite sleeping position, involves two pillows on his lap with his upper body flopped over the top. It’s exactly how I imagine a mini-Batman to sleep, if he tired from the upside-down position. Since he wears a BiPAP mask while sleeping, he can safely be smushed into his pillows and breathe. His assigned nurse squealed first, “Oh my gosh, that’s so cute! ” The other nurses in the recovery area joined in. “So cute!” “Look at him!” “Oh my goodness, did you hear him?” “He is just so smart!” Oh dear. The nurses called him “smart” for requesting a pillow (two!) and seemed surprised he could actually speak. I assume his smaller size leads people to believe that he’s much younger than his current age of 4 and a half. However, the critical thinking part of my brain was screaming. My son’s physical condition, namely differences in his lungs and bones, has no influence on his cognitive abilities. The seeming assumption that he can’t communicate needs, either orally, using sign language or through assistive technology, is a false one. Fast-forward to four days later. My son and I are sitting on his bed playing on an iPad. Already in our final stretch of this hospital visit, we wait anxiously for the discharge papers. We start to shove toys in millions of reusable grocery bags and pack up the car. There was one more thing on our “to-do” list: the monthly respiratory syncytial virus (RSV) injection. The nurse informed us the shot was going to be ready “any minute now.” When it comes to administering shots, we find that a few things work well: 1) Honesty. We tell Bucky exactly what’s about to happen, no longer than 30 seconds before the shot. 2) The faster the better. No slow pokes allowed. And 3) Hide the needle for as long as possible. We are not contestants on “The Price is Right.” We do not need a good look at the product. This nurse slowly (I mean slowly) sauntered in holding the needle up towards the ceiling. I slow-motion yelled a “ No! ” from across the room. “Alright, we’re ready!” When it comes to needles, my son seems to be able to smell them from three rooms away. Bucky screamed. The nurse fumbles, breaking rule #2, while giving us zero opportunity to have the “needle talk” with him. This procedure usually takes about 15 seconds. This time, it took a good three minutes. I believe the entire ordeal could have been avoided had the nurse treated him like someone who was aware of exactly what was going to happen. My son’s extensive hospital stays mean he has a heightened awareness of what’s going on around him. He knows all about X-rays, blood tests and echocardiograms. I believe he could draw you a detailed picture of them happening all at once to Superman, if he put his mind to it. I’m tired of having to remind nurses and doctors and lab technicians to use discretion when speaking in front of us because my son understands everything we talk about. My son is intelligent, observant, communicative. Our frequent interactions with health care providers have demonstrated, multiple times, that their default assumptions often reflect none of these things. I would love for those who work with patients like my son to have a more open attitude towards ability. My hope is that one day I’m not met with a look of shock when he suddenly starts a conversation, or gets out of his wheelchair to take a few steps, or asks a nurse for a pillow. My husband and I are his biggest cheerleaders. We applaud every step, every bite, and every new level he clears in Super Mario Bros. U. I’m not saying that strangers shouldn’t be applauding him, too. I’d prefer the applause to be for something other than asking for a pillow. Follow this journey on Mother of Bones. The Mighty is asking the following: Describe a moment when you were at a hospital and a medical staffer, fellow patient or a stranger made a negative or surprising comment that caught you off guard. How did you respond to it? 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 Don’t Have a Close Friend Who Is Also a Special Needs Parent

    The dad swoops in, whisking his son away from the playground. “We’d better get going!” Moments earlier, my then 2-year-old son, Branko, had mustered up a weak “hello” for the boy after sticking his tongue out for a solid 30 seconds. It was his typical greeting at the time. Branko’s voice is still weak from the surgery, the one that left him with two bright blue, full-leg casts. The swooping and whisking seems to be a typical finale for most playground encounters these days. I’m reluctant to admit it, but I know it was those casts. It’s always the damn casts. These situations don’t seem to bother Branko, but I feel a mild sting every time. “Pretty sure casts aren’t contagious!” I would never actually say this. Even though I’m secretly proud of my wit, I dutifully curb all sarcastic impulses. I bite my tongue and subdue my face into a hideous but moderately believable fake smile. My motivation for being polite stems from one goal: to make new friends. I’m going to put most of the blame for my friend famine on Branko, now a gangly, cast-free 4-year-old. Born with a rare genetic condition, a collage of health problems and a handful of lengthy hospital stays, Branko has no difficulty engaging with his peers and vice versa. Most of the other children we meet don’t seem to notice all his extra stuff — the casts, oxygen tanks, ankle-foot orthotics and the walker. In fact, most children beg for a turn in that walker, too. Don’t get the wrong idea. I have my friends — the ones who drop everything to bring chocolate and beer the moment they hear Branko is sick. Even though I’m grateful for this support, something still doesn’t quite feel right. I haven’t yet made a close friend who is also a parent of a child with special needs. To make our situation even more unique, my husband and I are the only two people on the planet with a kid exactly like Branko. His particular genetic mutation is a brand new, one-of-a-kind thing. There are no statistics for him and no clear trajectory for his health. There’s not even a name yet for what he has. I can only describe symptoms: weak bones, lung disease, skeletal deformities. I often wish I could mumble the name of a condition and just be on my merry way. Despite not being able to Google his diagnosis, I cautiously and appropriately try to make connections online, venturing into the territories of all things rare and genetic. Fully aware that I will never actually belong to these groups, I still manage to educate myself on anything and everything relating to Branko’s condition: osteogenesis imperfecta, spina bifida and chondroplasia, to name a few. I reach out with words of support, desperately trying to convince these parents of the common elements between us. I rarely get a response. One of the first changes we noticed in Branko’s bones was a slight bowing in his legs. The misalignment worsened as he grew, causing the tibia to shift and pop through his skin. Prior to this, many parents of typical children commented on the bowing, without truly understanding the significance of their appearance. “My son’s legs did the same thing, and look at him now! He’s fine.” It was as if we were discussing sunburn. I couldn’t listen to their remarks because our kids simply weren’t the same, genetically speaking. They weren’t part of my club, just like I’m not currently in the autism or Down syndrome club. In a perfect world, I would have found my people. I don’t even know if my people exist or will ever exist. In a perfect world, I could sift through stories of others with the same mutation and try to find something hopeful to latch onto. In a perfect world, I would discover a healthy 35-year-old who overcame several bouts of pneumonia and a handful of surgeries. But these stories haven’t been written. My son is the only one going through this. We haven’t yet been welcomed into the online world of special needs parenting, and in real life, the playground parents can’t handle seeing a sweet little boy wearing two bright-blue casts. I get it. We are the cautionary tale. We are the ones people feel sorry for. It’s a hard role to accept, but I’m almost there. Perhaps, and this is the most reasonable assumption, I’m still wearing the fear of the unknown, or more specifically, the fear of outliving him. Maybe this look lingers too long on my face, in my wrinkles, on my permanently chapped lips, creating the appearance of a person who would rather be left alone. In other words, maybe it’s just me. And while this appearance might say (or scream) back off, this gnawing voice inside me wants you to know that something as simple as meeting my eyes would silence that voice. A quick hello, a high-five, an email or an acknowledgement that I exist would silence that voice. Until I find my people, please play nice. My son might not officially belong in your world. But you are welcome in ours any time. Follow this journey on Branko Has Funny Bones. 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.

    5 Reasons I'm Super Excited to Spend the Holidays in the Hospital

    My son, Branko, can accurately be described as medically fragile. The rap sheet for all the scary stuff that’s happened to his body is beginning to sound fictitious: multiple fractured femurs, pneumonia, lung failure, rodding surgeries and more. My husband and I have spent an extraordinary amount of time in the hospital with him. While most people would rather experience a rapid succession of mouth-burn induced from piping hot pizza than a night in a children’s hospital, it’s become our reality, one that we can’t change any time soon. Branko’s next surgery is conveniently scheduled for the middle of December. He will have brand-spanking-new rods put in his lower leg bones and left thigh bone. Before you feel sorry for us and get all oh-my-goodness-I-can’t-imagine-the-horror-can-I mail-you-a-gift-immediately, please understand that any holiday, especially the big kahunas like Christmas and New Year’s Eve, are the most perfect times to be stuck in the hospital. Even though it was difficult to narrow down my list of the hundreds of things that are just super awesome about staying in the hospital during the holidays, I was successful in culling my top five for you: 1. Parking becomes slightly less awful. I usually cringe with horror when I enter the parking garage of our hospital, which is located in the heart of a major metropolitan city. You see, the parking rates are actually pretty great compared to the 3 million dollars per day charged at most of the other lots. This means that our parking garage, which is supposed to be reserved for patients, is always full. Always. It’s a nightmare. Even with an accessible parking pass — aka the best thing to happen to my stress levels in five years — we rarely find a spot. But something magical and downright spirit o’ Christmas-y happens to our downtown core toward the end of December: people disappear! This is the only time of year when I don’t have to circle the garage like a vulture, slowly and awkwardly following pedestrians to their vehicles. I especially appreciate not having to stifle my urge to yell, “Could you go any slower?” at snail-paced stroller folding. 2. Celebrity sightings! I live in Canada, so my chance of a celebrity siting is much lower than yours, America. But, if you play your cards right/have a medically complex baby, Canadians can meet celebrities, too. Everyone knows how famous people love to be seen with all the sick children of the world. Two years ago, after my son had a cardiac arrest, my family got to meet Rob Ford, the infamous crack-smoking former mayor of Toronto, in our hospital lobby. While meeting Rob Ford didn’t quite alleviate all the pain, fear, anxiety and splashes of PTSD that went along with almost losing my son, it was still so exciting. I never meet anyone famous! 3. Saying “no thank you” to New Year’s Eve shenanigans. By far, the best byproduct of having a sick child is saying “nothing” when people ask what I’m doing for New Year’s Eve. It’s preferable to just sit in a stuffy hospital room consuming KFC and chardonnay instead of seeing my closest friends. I look forward to sleeping on a vinyl cot/torture device while my friends are out dancing and laughing and having a pretty great time. I will especially appreciate the nurse’s sad Tommy-Lee-Jones-eyes after she informs me the hospital won’t allow two cots in the room, meaning husband and I will be forced to spend our first New Year’s apart in 10 years. And while I sit alone, covered in chicken grease and cursing myself for running out of chardonnay, I will definitely remember to tell myself over and over: at least I’m not out in the cold waiting for a cab! And the more I say it, the more I might even believe it. 4. The ultimate excuse to avoid every annoying thing about the holidays. Being stuck in the hospital caring for a sick child absolves parents of all responsibility with the outside world. Finally, I can confidently say “no thank you” to lavish holiday parties, warm hugs from family and friends and especially buying nice things for the people I love. Blech! Gross. 5. No line at the hospital cafeteria. This is anyone’s dream come true. Since there are usually fewer people around during the holidays, there’s rarely a line. Instead of waiting 10 minutes to pay for my fifth bag of Doritos that day, I might wait only seven or eight. In addition to reduced line-ups, I will especially appreciate the random holiday hours. Even though I have no comprehension of why they need to close at 4 p.m. on December 23 and then 3 p.m. on December 24, I like the added challenge of having to race downstairs before the doors lock. (It’s called cardio, people.) I feel like I need to apologize. Here I go again, bragging about all the wonderful perks and special treatment us hospital parents get during the month of December. I should really stop trying to make everyone jealous of this glamorous life I lead. I would never want to be one of “those” moms. Forgive me? Follow this journey on Branko Has Funny Bones. The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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.

    The One Sentence I Want All Special Needs Parents to Stop Saying

    As a self-certified, part-time, special-needs mama blogger, I read all the stuff. I’m borderline obsessive with reading every single tiny thing out there that might have anything to do with children with special needs, or more specifically, rare genetic diseases. I may have even reached out to you (yes, you!) over the past year. And you probably ignored me. But that’s fine. You were probably busy calling insurance companies, dashing to appointments and changing your kid’s umpteenth diaper of the day. I forgive you. But there’s one sentiment I can’t overlook, one that insidiously appears in the lexicon of parents who are going through something really bad, something unexpected and awful, something that hits them especially hard, usually somewhere in the gut. A bout of pneumonia. A hospital-acquired infection. Uncontrolled seizures. A surprise G-tube surgery. A lengthy NICU stay. “At least he isn’t going home with an oxygen tank.” I’ve read this sentence too many times. And it stings. It’s weird and gross and makes me feel icky inside. These feelings are partly due to the fact that my son spent 17 months on home oxygen. And even though he is recovering nicely, I still feel all the feelings. With my son’s lung disease, we could do two things: a) wait for those pesky lungs to just, you know, grow, and b) stay away from absolutely everyone in the world, as well as anything exciting going on in the world, in the hopes for a virus-free kid. Our story had a happy ending: we were able to wean my son off oxygen slowly, and now he’s a walking, talking, slightly argumentative 4-year old boy. It wasn’t so bad, having an oxygen tank lingering around him all the time. It was just one more thing to pack in the car, like diapers or sippy cups full of milk. The only difference was that running out of oxygen wasn’t a problem that could be solved with a trip to the 7-11. But I’m not here to talk about my son. I want to address this silly game we play with other kids. I will begrudgingly admit, I used to play the “at least it’s not (fill-in-the-blank)” game. I used to scan the main foyer of our children’s hospital and think, At least he’s not them. What I didn’t notice at the time were the other parents playing the same game with the other children, perhaps even playing it with my son. At least it’s not cancer. At least he can swallow. At least he can breathe on his own. Even though it may be comforting to think these thoughts when faced with an awful and unpredictable situation, it won’t actually help. Saying these things, even in the confines of your private life or personal blog, doesn’t help anyone. Can we all agree to stop playing this game? There are no winners. Saying “it could be worse” is one thing, but using another person’s actual, real-life situation, such as having cancer or depending on supplemental oxygen, is denigrating. It belittles those who have kids going through chemotherapy, who have trouble walking or talking, or who require an extensive list of medical equipment in order to eat or breathe properly. Because you know what? Being on oxygen isn’t the end of the line. It’s not the end of the world. Starting chemotherapy isn’t the end of the world. Having a feeding tube surgically inserted in your kid’s abdomen isn’t the end of the world. It’s the start of something new and difficult, yes, but it isn’t the end. It’s only the beginning. Follow this journey on Branko Has Funny Bones.

    When Non-Doctors Give You Medical Advice About Your Child

    I’m not a doctor. I haven’t even made it to Season 4 of “Grey’s Anatomy” — yet. However, my son, Branko, attracts a lot of attention from amateur doctors, people who think they know a thing or two about medical science. Here are a handful of medical clichés people have shared with me over the years: 1. I would never get the flu shot; it doesn’t work, and I would never give it to my kid. Personally, I think that’s a really bad idea, but beyond that, I’m pretty sure I wouldn’t let my son out of the house if the flu shot were unavailable. For him, influenza means a hospital visit with the possibility of a surprise intubation. (And FYI, a surprise intubation isn’t any more exciting and fun than a planned intubation.) If you don’t want to get the flu shot, that’s fine. But please don’t tell me about it, because I will literally obsess over whether you have sniffles or not until flu season is over. And please, never mention that the flu vaccine “doesn’t work.” For my own sanity, I need to believe that it works. 2. My best friend’s cousin’s daughter’s aunt had the same thing as him and she’s fine now. Part of the reason why I started writing about my son’s medical condition was to make the complexities of his condition more clear, for both myself and the people in our lives. He has a one-of-a-kind genetic condition; there isn’t even a name for what he has. No one else’s symptoms are quite like Branko’s. Nobody. No one. Zilch. By casually mentioning someone had something similar and is now “fine,” the severity of his condition is downplayed. It’s a bit insulting. Having bones like his — ones that randomly grow however and wherever they feel like — is serious business. It’s not a sunburn. It’s not a canker sore. It’s not even the same as when your friend, Sammy, had a cast for two weeks after falling off a Pogo Ball. Also, what does exactly “fine” even mean? Is “fine” the same as being an average, healthy person who doesn’t need a mobility device? We aren’t really striving for a typical definition of “fine” over here; I suppose our definition is a bit more relaxed. “Fine” at our house means happy and stable, whether he’s in a wheelchair, a hospital bed or running around the backyard with no pants on. 3. All those chemicals and drugs can’t be good for him. There seems to be a growing trend where completely sane and rational people, without a chemistry degree in sight, all of a sudden become experts on the chemicals in our daily lives. My son wouldn’t be alive today without plastics, drugs or vaccines. Please don’t be offended if you catch me rolling my eyes during most conversations about the avoidance of preservatives, food coloring, GMOs, sunscreen or Kraft dinners. I once saw a person wrinkle her nose when I said we were giving Branko morphine as part of his pain-management plan. He had just had major orthopedic surgery on both legs, in which the bones were literally ripped apart and put in again with metal rods. “Should you be giving morphine to a child so young?” she asked. All of a sudden, I was frightened of “Big Bad Morphine.” I second-guessed myself at first, but my gut said stick to the plan. Turns out, doctors usually know what they’re doing. Morphine worked wonders for Branko, getting him through the initial, more painful period, and allowing his bones to heal. 4. It sounds like he’s been misdiagnosed. He should try going to (fill in the blank) hospital. Uh-oh. Wait. Not only is this very confusing information, coming from someone who isn’t a doctor, but it also makes me nervous. Have I been doing everything wrong? Should I drive six hours to that other children’s hospital? Are there other surgeons with more experience who I should be seeking out? Why do I suck at being a hospital mom? This advice came to me from another mom of a boy with a genetic disease. She felt strongly that Branko was misdiagnosed and had the same thing as her son. Perhaps she felt we might have a stronger connection if our kids had the same thing. She had a negative experience at our hospital and felt a need to sway people from it. Some would definitely find her advice helpful; I found it a bit sad. We had a chance to bond over our shared experiences, to be special-needs-mom allies, partners in crime. But it didn’t turn out that way. Over the years, I’ve become more savvy at deflecting medical advice from non-doctors. My secret: I kindly say “no thank you” followed by “I get all my medical advice from Dr. House and Dr. Grey.” That usually does the trick.

    A Request on Behalf of All Skinny Babies and Their Moms

    It’s hard to be a skinny baby. I mean, I don’t exactly know how a skinny baby must feel, because A) I wasn’t a skinny baby and B) I don’t even remember being a baby. But my son, Branko, was a skinny baby. Having a rare chromosomal mutation meant his physical appearance was slightly different than average. He was skinny, and I mean really skinny, as in less than first percentile skinny. He had big, bulging, droopy eyes with permanent bags under them. His head was less round and more oval,with an unusually long neck due to extra space between the vertebrae in his spine, making him look slightly more giraffe-like than infant-like. And let me tell you, it was hard. Not for us, his parents, but for the rest of the world. Specifically, the rest of the world’s eyes. Branko didn’t quite fit the expectations of what a baby was supposed to look like. It must have been hard for the random strangers who, after asking his age, would wrinkle their noses in disbelief. It was as if I’d just told them Branko was actually a baby rocket scientist with a freshly completed PhD dissertation. Nobody wanted to believe he was only X number of months old. Their eyes and furrowed brows would radiate some obvious thoughts: Why doesn’t this baby weigh the same as my nephew, Johnny, who seems much fatter and juicier and should I remind this mother that she’s supposed to actually feed her baby?? Apparently, skinny babies can rapidly sting the eyes and hurt the brains of people who are used to seeing all those gushy, squishy, and round typical babies. Some new parents even provide weekly weigh-in updates on Facebook for their newborns, so everyone is aware their baby is not of the skinny variety. “3.25 weeks and 15.789 pounds already!!!!!” It was easier in the wintertime because I discovered that if I put a turtleneck, legwarmers, winter boots, a one-piece snowsuit, two hats, and a scarf on my skinny baby, he could usually pass for “normal.” We’d even receive positive attention in public, including the odd “Enjoy every moment” or “It goes so fast” or on a rare occasion, “He’s adorable!” Skinny babies don’t get much love in any sort of group situation, especially when there’s chubbier babies sitting around, being all cute and roly-poly. They suck up all the attention in the room, garnishing comments like “I want to eat you” or my personal favourite, “I just can’t handle the cuteness!!!!” I used to wish for someone, anyone, to want to eat my baby. Most of the time, I felt pathetic. As his mother, it was my number one job to feed him and keep him healthy. And I had failed. In fact, finding that one thing, the magic bullet to make him gain weight became my obsession for more than two years. I thought food was going to solve all his medical problems, like so: Food  = Strong Bones = Walking = All Our Problems Solved Forever! In the end, my obsession with food and weight faded abruptly as soon as Branko had his first pneumonia at the age of 2. We had our first experience with the ICU, a close call with a breathing tube, and a brand new attitude toward eating. Being forced to hope for your child’s survival makes all other hopes seem ridiculous and extravagant. We realized it didn’t matter if he ever ate kale, or tried carrots, or looked a bit plumper in the face. When we were discharged, I honestly didn’t care about what, or how much, he was eating. As long as he wasn’t on the verge of dehydration, I was happy. Since then, we’ve realized that a scarce appetite, ongoing respiratory problems and a few sensory issues are probably what’s causing his lack of interest in food. He now eats the same thing every day for breakfast, lunch and dinner. I am sure a dietician would gasp in horror at the lack of variety, but whatever. He’s walking, talking and not lying in an ICU bed. That’s what matters. If you are lucky enough to meet a skinny baby, or even a baby that doesn’t quite look exactly like every other baby in the room, pay close attention. Even though it might be hard to resist the delicious, chunky thighs of those other babies, please, you must resist. Hold that skinny baby, maybe pretend to eat him (but just pretend). The attention might make a new mom’s day. This post originally appeared on Branko Has Funny Bones. Want to help celebrate the human spirit? Like us on Facebook. And sign up for what we hope will be your favorite thing to read at night .

    My Medically Fragile Son Is Getting Better but I'm Still Terrified

    Over the past three years, most of the updates on my son, Branko, and his health were plagued with negativity. Branko is medically fragile and has a chromosome 12 microdeletion. It’s not like we wanted to make everyone we spoke to feel like a pile of garbage, but things were just really bad for a while. Fast forward to spring 2015, AKA the time when everything good happened at once. Branko started more intensive physiotherapy in March and took his first steps less than three months later. After some positive test results at the hospital, we received the go-ahead to start weaning him off supplemental oxygen. As of this week, he is now completely oxygen-free. Branko received a highly coveted spot in a specialized, therapeutic junior kindergarten program for September. We also recently convinced him to start eating corn. Even though these are all amazing things, I can’t help but be a bit nervous. We were deep within high-alert panic territory for so long and now we’re venturing into slightly more relaxed terrain. There are things that don’t come naturally to me anymore. There are other things that outright terrify me. I have forgotten how to have a regular conversation. I never asked anyone else how they were, how their kids were or where they were planning to go that summer. It’s not like I didn’t care, it’s just that my mind was mushy. Each time I attempted a regular conversation, my mind would clog with worry. Is his oxygen high enough? Is his heart rate too high? Is he dehydrated? Did I label his food in the nasty hospital fridge? Whenever Branko was in the hospital, especially the PICU, my mind would solely be reserved for him. I would memorize his ventilator settings and morphine drip concentrations for no other reason than to feel like a more useful part of his team. In addition to having to re-learn how to talk to my friends, I need to get used to taking him out in his new, oxygen-free state. In crowded, public spaces, nothing screams “Back the ‘truck up’” like a nasal cannula on a kid’s face. People make room for you. Yes, there may be pitiful stares and intrusive questions but, for the most part, you don’t have to wait for a swing at the park. I have been told to “Go ahead, dear” in checkout lines more times than I can count. Of course, the flip side of these niceties is that I began to expect them and became quite confused every time someone didn’t let us go to the front of a line. Now that he’s off oxygen and can walk with support, I fear that he’s going to pass for “normal.” I’m afraid people aren’t going to be extra careful with him. I have no desire for people to treat him just like everyone else because he’s not like everyone else. He has fragile bones and arms that don’t quite work the same as “normal” ones do. He has a high pain tolerance as well, so it’s not always clear when there’s a serious injury. We can do so many things now that he’s off oxygen – road trips, staying at a hotel, and flying on a plane – and these are the things I need to focus on. For the first time, there’s room in his wagon for his little sister to sit. I can now see his entire tiny face and spot his boogers from a mile away. We have so many wonderful adventures ahead of us. I just hope I can always remember, even vaguely, how hard things used to be. This post originally appeared on Branko Has Funny Bones. Want to help celebrate the human spirit? Like us on Facebook. And sign up for what we hope will be your favorite thing to read at night.

    To the Mom in the Hospital Waiting Room Who Saw How Scared My Son Was

    Dear Mom Waiting at the Orthopedics Clinic With Her Kids, It was a hot day. And heat means it’s going to be a rough day for my son, Branko. Summertime breathing was a grueling task due to all the fluid junk in his chest. I showed up in the waiting room, scanning the area for a wall socket I could plug his portable oxygen concentrator (POC) into. You kindly moved over so I could have a closer seat. I’m going to be honest: sometimes people, even parents of sick kids, don’t move over. Thanks for that. Branko looked terrible that day. In addition to having an oxygen tube and a roaring POC beside him (a sound you never quite get used to), he had a broken femur. He’d broken it the previous week, about a month after his sister was born. We were there to take the soft, temporary cast off and replace it with a fibreglass one. You didn’t notice my daughter at first — she was so tiny back then — and I had tucked her in nice and cozy in the bottom half of our brutally giant double stroller. I may have even run over your foot. Sorry for that. You didn’t flinch at the sight of Branko. Your two kids, a boy and a girl, didn’t flinch. I immediately sensed that you didn’t feel sorry for us, and I liked that. We started to chat, and you explained that your 4-year old daughter had broken her elbow a few weeks ago. This was a follow-up appointment to see if the break had healed. Today might be that special day the cast comes off! (Spoiler alert: she needed it for a couple more weeks.) As soon as we mentioned the word “cast,” Branko had a meltdown. You see, this was to be Branko’s sixth cast. Six. Putting a cast on is terrible. He usually has a panic attack, and it takes at least two people to hold him down. But I was there alone that day, and I was panicked about having to do it all by myself. (I did do it. And I rocked.) Both you and your daughter tried to calm Branko down by asking what color he wanted this new cast to be. It didn’t work, but it kept my mind calm for a few moments. Your daughter’s name was called. You wished me luck, and I remember thinking about how nice you and your kids were. But nothing prepared me for what happened 20 minutes later. You sent your daughter back into the waiting room to show off her fabulous new purple cast! She went right up to Branko and said, “It doesn’t hurt, and I got to pick the color.” I remember thinking I would never get a chance to thank you, to tell you how awesome you and your kids are. If your goal is to raise kind and sensitive children, then feel free to keep up the good work. Follow this journey at Branko Has Funny Bones. For all of February, 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. No gesture is too small! 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. Want to 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 .

    I'm Forgiving Everyone Who Made My Son's Hospital Experience Terrible

    Last year at around Christmas, my son, Branko, started to get sick. It wasn’t your run-of-the-mill virus involving boogers, humidifiers and late night snuggles. This was a bit different. He was lethargic in the truest sense of the word, becoming more and more difficult to wake up from a deep sleep. His skin was pale, he wasn’t eating; the doctors kept saying he was OK. “His lungs are clear.” I remember hearing our pediatrician espouse those four words, saying them over and over, and I adopted them as a mantra to give me strength. Cold hands? That’s OK, his lungs are clear. Constantly asking for a nap? No problemo, his lungs are clear. Generally fussy all the time? It’s fine, his lungs are clear. Our doctor said these words exactly eight days before Branko had a cardiac arrest in the foyer of our local children’s hospital. I still haven’t really processed those first few days in the ICU. I remember being matter-of-fact about all the medical stuff, nodding politely when they explained he could have brain damage, asking specific questions about his catheters, tubes and oxygen requirements. In my mind I was functional and proactive and helpful, but in reality I was quiet. My brain was just quiet. I craved simple things that had nothing to do with Branko, like compliments on my hair or discovering a closer, cleaner public bathroom. I wanted attention, but not too much. I didn’t want to bother anyone. I started weeping when a nurse told me she didn’t mind if I ate in the room. (I was five months pregnant). I wasn’t overwhelmed; I was just disappointed in myself that I’d broken a hospital rule. Stupid, stupid, stupid me. All I really wanted was for a complete stranger to be nice to me. Maybe buy me a coffee. A complete stranger to say, H ey you, sitting there all alone, I’ve been where you are and I conveniently have a crystal ball that told me your son is gonna be fine, and here’s five million Grande Americanos. Sitting there, listening to the beeping and the hums of the respirator, hoping I finally might be able to trust the opinion of a doctor once again, I feared I was never going to get over this one. I feared I was going to spend the rest of my life hating every stranger who didn’t buy me a coffee. It’s now been one year since Branko’s cardiac arrest, one year since he started using supplemental oxygen 24 hours a day, and one year since the worst moment of my life. This is perhaps the gift I’m most thankful for. This was his rock bottom, the moment when doctors finally started to take his condition more seriously. This was the official start of celebrating every single tiny thing that was simply not terrible. Branko was intubated in August during an RSV pneumonia. We celebrated his successful extubation ten days later. Branko was put on oxygen and BiPAP this year. We celebrate every time his numbers improve or his oxygen requirements go down. Branko had major rodding surgery for his left femur in October. We went home after four days with no complications. We celebrated nurses who didn’t bat an eye after Branko’s poo explosions. We celebrated fast IV insertions. Oh my, we celebrated those indeed. I forgive all the strangers who never bought me a coffee. I forgive you, D r. His Lungs are Clear, for your false reassurance, for saying that everything was OK when things were definitely not OK. I forgive you, Dr. Christmas Day, who extubated Branko and then made some serious mistakes with regards to his morphine weaning, causing my son to tweak from withdrawal for three days. I’m able to forgive now because there are just too many things to be thankful for. I’m sick of being mad at the world. This feels a bit better. This post originally appeared on Branko Has Funny Bones. For all of December, The Mighty is celebrating the moments we gave or received a gift that touched our lives in a special way. If you’d like to participate, please send a blog post describing this moment for you. Include a photo and 1-2 sentence bio to community@themighty.com .Hint! Some gifts don’t come in packages. 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 .