Hey Little Fighter

@hey-little-fighter | contributor
Hey Little Fighter is a blog that supports special needs parents. Carla and Michelle feel strongly about advocacy. They also provide resources and encourage positive living in the face of life changing diagnosis.

Letter of Thanks to Surgeon Operating on My Child

This letter was written from the point of view of two hospital moms, Carla and Michelle. Their children, a little girl and little boy, have both undergone numerous surgical procedures and dedicate these words to the incredible surgeons who saved their lives. Dear Surgeon: You just brought my baby from the operating room. You may have met us a few days ago, but that little one is my whole life. Before you leave, there are a few things I want you to know. When we finally met, the nerves I felt made me sick. My heart filled with worry; would I want you to operate on my child? But then you spoke. You spoke with such confidence and knew you could do the impossible, what everyone else doubted. Forgive me for staring, but your hands… I stared at them for a long time when we first met. Maybe even more than making eye contact. What gift were you born with that makes your hands so brilliant? Your hands have saved so many babies. I know that because I Googled you and asked other moms about you. Spent hours and hours reading anything related to you, your hospital, where you studied, what you majored in. Is that strange? How else could I put my child’s life in your hands? I’m really sorry to tell you this, but I also know you have lost patients. Not every battle can be won, even though I know you try. Invincible, that’s the vibe I get from you. But you’re human, I know. That’s OK. Did I tell you how long I traveled to get here, for you? Hours and hours just to get here and have you do this, this incredible surgery on my child. We traveled miles from our home hospital to get here and place my daughter, my son, in your hands. I spent hours looking for pictures of you so I could put a name to the face of the person I was trusting with my most precious possession. Literally, you opened my son’s body’s and touched things, made them work better or even right. I’m his mother and not even I have done that. He lived in me, and he knows what I look like on the inside. Yet, I can’t say the same about him. You can, though. We waited for hours while your hands were inside my little boy’s body, seeing things and parts of him that I have never seen and just prayed and waited. Your such a different type of person, a surgeon, a fixer, a giver. That goes without saying. Me saying that I trust you is a bit of a understatement. So when I hand over my son’s tiny, frail, dying body, know that I trust you. To the point that I know you’ll do whatever it takes to make it better. Remember his name and mine; he has a beautiful family, all rooting for you today. Surgeon, you did a work of art on my daughter’s precious little body. The moment you walked down the white halls after surgery and told me she survived? That moment changed my life. A part of me felt like those weren’t the words that were going to come out of your mouth, but they were. Please, tell your wife/husband that I said thank you when you came home later than you promised… again. Thank you for your commitment, dedication and confidence in doing the impossible. Surgeon, thank you for being different, for standing out in life, for following your calling. Thank you for doing what so many can’t. Dear surgeon, thank you for working through sleep, hunger and dinner parties. You changed my life that day you stepped in the operating room. With love, Your Patient’s Mom Follow this journey on Hey Little Fighter. The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. 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.

When a Friend’s Brave Act for My Son Knocked the Wind Out of Me

My son, Caleb, is a looker. He’s only 5 years old, but at 36 pounds and nine surgeries, he’s a real head turner. That wasn’t always the case (says his mom who doesn’t believe a word of that). Even at 2 pounds soaking wet and not at all ready to brave the world, he was gorgeous to me. It took my son a few months to look like a real baby, but he came around. That scary NICU place let him out after seven months, and our days of surgeons, scrubbing in and gown-wearing were over. That feeling was actually short-lived but that’s another story. One day, I found myself the victim of the proverbial rock and hard place. Our medical supplier called to say our coming shipment was denied due to insurance changes (non-fixable by me and with a full one day’s notice!). I’ll spare you the details and just say it was a nightmare. What does any mom in this situation do? My son’s shipment literally contained his nutrition, the one and only thing he “ate,” his tube-feeding formula. After the phone calls, tears and offers to trade kidneys, I turned to Facebook. In my desperation and spilling of all emotions to a group of moms who would “get me,” I didn’t realize the settings of the group were open. That means all my friends saw my sad, desperate plea for help from other moms who might have extras of this particular formula. Let me gently remind you — my horrifying problem involved my infant son not getting his only source of nutrition, his specialized formula, to my house. No, I couldn’t feed him something else, and no, I couldn’t buy it myself. A box of six cans was over $200 or more. At the time, it was the only thing he could get through his g-tube, and it was cost-prohibitive for us. Jessica’s son Then there was this friend… Delaware is lucky to have her. Remember how everyone saw my hideous post screaming to the winds for help? My friend, Jessica, saw the post and helped in a way that knocked the wind out of us. Her son was in the NICU facing IUGR (intrauterine growth restriction), liver failure and coagulopathy (a condition that affects blood coagulation), and even so, she showed an incredibly generous and brave heart. She saw my post and sent the information of the formula my son needed along with our address to several of her friends and family she thought could help. Explaining our situation, she told them if they could buy and send us the formula, to please do it. No yes or no answers needed to her email. Jessica told them if financially they could help, to just do it. And did they ever. Let me spare you the ugly-cry details, but that one Facebook interaction fed my son for months. Within two days, boxes of formula arrived at my doorstep. The brave, generous and incredibly bold act she took upon herself to reach out to others, and even dig out of their own hearts and wallets to help my family — well, that just changed my life. I saw what the power of desire could do for the better. By the time our insurance situation was fixed, over a month had passed. Sometimes I still wonder… what would I have done otherwise? Years later, I’m still moved that most of the kind souls who helped us in times of need didn’t know us from Adam or had never heard of my son’s medical conditions. (Caleb has short bowel syndrome, pulmonary vein stenosis and hypertension and gastroparesis.) They just sympathized with another hurting human being. I try to make a difference wherever I go, because I remember that generosity of spirit. It was more than opening their wallet to my family; they opened their hearts to my son’s heart and literally his stomach. Give a smile, a dollar, a handshake or hug. If it’s in your hand or heart to help, do it. Even in the most unconventional way, you could change a life. Because I’ll never forget that time my friend used Facebook to feed my son. Caleb and Noah Follow this journey on Hey Little Fighter. 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.

When You Feel Guilty About Disciplining Your Child With Medical Issues

Let’s admit it, folks. Discipline is a tough subject to talk about when you live the hospital life. The reality is our little ones aren’t always on their best behavior, whether they’re sick or not. Though it’s a difficult topic, and there are many schools of thought, let’s blow this topic wide open. When you’re raising a child with medical issues, discipline seems so much more difficult. Your kiddo is sick, and not just any kind of sick, life-threatening sick. So how do you get to the discipline through all the guilt? My daughter, Lyla, was 15 months old when she was diagnosed with neuroblastoma. It was a tough age for hospital life. She was all about exploring, learning and testing boundaries. There were times when she had energy just like any other child and had to be told “no.” As her mom, I didn’t want to cause her any more tears than she already let out. We would often feel guilty, thinking she would end up back at the hospital. It was an emotional struggle, but for my husband and I, the solution was clear. Not knowing the outcome of Lyla’s illness, we decided to stay positive and remember there was a chance she would pull through. What kind of child do we want her to be? Discipline can be the difference between raising a respectful, compassionate and grateful child or a bratty, spoiled, entitled little one. Our job as parents is to love and care for our kids, guide them and teach them wrong from right. Whether our children are ill or not, it’s our job raise them with gracious, respectful qualities and a grateful attitude. Here are our suggestions on how to discipline a child with an illness: 1. First and foremost, always make sure discipline comes from a place of love. If you or your little one feel upset, wait a little while and cool your jets. It’s amazing how quickly we can stoop down to a childlike level, so it’s best for everyone to have a cool and calm head before disciplining your little one. 2. Use your words and explain why. It’s easy to underestimate their level of understanding, but even toddlers can understand sentiment and tone. Explain what they did wrong, taking their age into account. Tell them how it made you feel and why they shouldn’t behave that way. 3. Make sure you and your partner are on the same page. Be a team. Talk about discipline before matters come up and be a united front. This way, your intuitive little one won’t perceive a weak link in the chain. They can wear your down! So try to avoid them from figuring out who is the one aching to give in. 4. Always follow through. Most of our kids are already home-bound or hospital-bound, so maybe that means their discipline won’t extend as far as a child with less limits. But if you say no, follow through. If you set a time limit on their iPad, follow through. Kids learn very quickly, so if you say something, stick to your word. 5. Fight the guilt. Our little ones are capable of learning manners, having structured time for learning and many other wonderful things. As parents, we can find so many things to delight them. A little guidance and discipline won’t make them hate us, and they will appreciate it as they grow older. 6. Be strong against outside opinions. There is no precedence for raising a child with medical needs. So many of your friends and family (especially family) will have no idea how to handle behavior issues. In fact, they may be shocked to know you set limits and teach them manners because so many people feel bad for them. Don’t be one of those people. Your kids are strong and courageous. There is no need to pity them. They are just like any other child with hopes, dreams, fears and joys. 7. Last but not least, always do what you feel is best for your child and their circumstances. There are no set rules for this life we lead and no one way on how to do things. Some kids live in the hospital or aren’t allowed to leave the home. Some have much more freedom. There are some children who can engage in more activities than others, but may be restricted in socialization due to medical or immunity issues. Come up with a personal plan of action and stick to it. I believe the biggest and perhaps most important aspect of disciplining a child with a major medical illness is never to feel bad for them. Follow this journey on Hey Little Fighter.