Dallas Fowler

@dallas-fowler | contributor
Dallas is a mom to a little boy with a rare disease, Hirschsprungs Disease.Her son has had multiple surgeries with a long road still ahead. She spends her time playing with her son, blogging about their trials and tribulations and advocating and raising awareness for his disease.
Dallas Fowler

A Mom's Apology/Thank You Letter to Her Son's NICU Nurses

As a mom who has been in and out of the hospital with my son his whole life, please believe me when I say I’m sorry. I know I’m one of those nightmare parents you go back to the nurse station and talk about. Please believe me — there is nothing I want less than to make your job harder. There’s a reason I am this way. There was a point in time where I sat and watched my newborn baby fight off septic shock. I watched as machines breathed for him, I watched as the drains emptied infection from his small body, I watched as my son almost died. Of course, you guys were there right beside me, taking a little more time explaining what the arterial line in his neck was for than his surgeons did. You guys were there when I was finally able hold him for the first time in weeks. You were the ones who picked up my sedated newborn, along with all his lines, drains and ventilator and handed him to me. Who handed me tissues as I cried, who took my phone off the table and took pictures of me and him without me knowing. Pictures I will truly cherish forever. You guys were always as excited as me when his white blood cell count went down a little. “One day closer to getting the hell out of here,” I remember one of you saying. A nurse was the one who showed me how to care for my son’s colostomy bag the first time. I don’t think nurses get enough credit, so believe me when I say I do not mean to be the mom who makes your job harder than it is. When you watch your child go through the things I have watched my son go through, to fight off septic shock at 3 weeks old, to survive a bowel perforation that caused his stool to leak through his entire body cavity, to having multiple surgeries, multiple bowel obstructions, multiple infections, stoma revisions, dilations and irrigation treatments twice a day for months, you learn a thing or two about your child. I know normal post op behavior for him. I just know what’s normal. So when it’s 3 a.m. and my sweet boy is only a few hours post-op, please don’t think I’m ridiculous for saying, “He feels too hot,” “He’s in too much pain,” or “Something just isn’t right.” Mother’s intuition is incredibly strong, especially when I have been through this so many times. Check his temperature, page the on-call for permission to give more pain meds, and don’t be surprised when I ask you to ask for an abdominal X-ray because I know something just is not right. You’d be surprised how many times the X-ray has shown impacted stool and an obstruction. You would be surprised how many times my son has started throwing up shortly after, how many times he’s gotten the NG tube just in time for relief because I have been that mom. Many of you know me and my son now and have come to trust that I know my son better than anyone. I am thankful for this, but at the same time incredibly sad you do know us so well. I don’t mean to be the nightmare parent who tells you he’s finally ready for clear liquids and asks if you’ll ask the doctor. I am so thankful for nurses. You all do a job I could never do. Not all angels have wings — some wear scrubs. Follow this journey on Dear Dallas. The Mighty is asking its readers the following: Write a thank you letter to someone you realize you don’t thank enough. Check out our Submit a Story page for more about our submission guidelines.

Dallas Fowler

Mom Responds to Woman at Walmart Who Called Son's Stoma's 'Repulsing'

Tonight, we were in Walmart standing in a long line waiting to check out. My sweet 2-year-old wanted me to hold him. As I picked him up out of the cart, his shirt came up exposing his two stomas and bags on his stomach. Typically, I have a onesie underneath his shirt, but tonight I just got him dressed quickly to run to the store. The onesie helps to keep his bags in one place and makes it harder for him to tug and pull them off. There was an older woman in line behind me who caught a glimpse and shrieked a little before she said to me, “Why in the world would you let someone do that to him?” I turned around speechless and just looked at her before she continued and asked why he had them. I gave her the short version and basically said, “His colon didn’t finish forming so he needed them.” I left out that he had a rare disease called Hirschsprung’s disease because I was a little annoyed from her first statement. She then goes, “Well I am sorry, but I just think that is so repulsing, can you please keep his shirt down?” At this point I just wanted to shake this woman and scream “What is wrong with you?” But instead, I told her to have a good night and went to another line. So now I’m sharing this picture — because there is nothing repulsing about my son. Stomas and ostomies seem to be a taboo, when in reality, more than 500,000 Americans have one. My son’s disease may be rare, but his stomas are not. So here’s a little education for anyone who doesn’t know about stomas and ostomies. A stoma is a surgically created opening that allows the body to expel waste. Both of my son’s are from his colon, but stomas can be from your ileum (small intestine), or bladder. Was this the first choice of a life I would have chosen for my son? Absolutely not. But this was his only shot at life. When he was 2 weeks old, his colon ruptured. It left him with a life threatening infection that nearly killed him. His stoma saved his life. There is a very good chance he will have these for the rest of his life, and if he does, it will be my job to teach him a positive body image. It will be my job to teach him to love himself and his bags. Had he been a couple years older and been able to understand the ignorance the lady was spewing in line behind us, how much of a negative impact do you think that would have had on him? What that woman doesn’t understand is, when my son is healthy, he is no different than any other 2 year old. He runs, plays, swims and goes to daycare. When he’s healthy, you wouldn’t be able to look at him and know he’s had more than 20 surgeries and procedures. You wouldn’t know he’s got more ahead in his future. You wouldn’t know he gets painful home dilation and irrigation treatments twice a day every day. You wouldn’t know that twice a day a catheter is put into his stoma to “feed” it stool in the hopes of growing his colon. My son is my heart. He is so funny and full of personality. He is sweet and loving and kind but also a little ball of fire. Please be kind and choose your words wisely, especially should you choose to comment about something that is none of your business. Everyone is fighting a battle you know nothing about, and my son is winning his. Follow this journey on My Hirschsprung’s Hero. The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to 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.

Dallas Fowler

To Mom Who Said I Shouldn't Have More Kids Because of My Son's Disease

“Are more kids a plan in your future? I couldn’t imagine having to do what you do, and what if you have another kid with it? Surely not, because I’m sure you would feel guilty if you had another with the same disease. It’s hereditary right? I just pity you so much.” Excuse me? Pity me why? “ It? ” My son’s disease has a name, and if you’re not close enough to us to even know the name of it (actually, even if you are), then don’t pity me. Don’t judge me. Don’t judge my son. M aybe you don’t know how your words can affect people. Maybe you don’t know how they affected me tonight. Maybe you don’t think you said anything wrong, but you did. More kids are absolutely a plan for my future. My son is the biggest blessing I could’ve ever received. I can’t imagine my life without him. I can’t imagine the person I’d be or the path I’d be on. My son has made me grow and better myself; he’s changed me in so many good ways. Yes, it is so hard. Money is tight, medical supply pricing is ridiculous and chances are your insurance is never going to pay for everything you need. (And if they do, will you please send me your insurance company’s info?) I think I’ve cried almost every single day for the past two years. But they’re not always tears of sadness. My heart breaks for my son when he’s in pain or sick, but my heart is so full on the good days, like when my son gains a pound or when biopsy results come back with a positive report. So many of the tears I’ve shed were happy tears. I can’t even begin to express the happiness my son brings me. Every. Single. Day. I think if you ask any special needs parent, they’ll tell you not to pity them. They’ll tell you how full their heart is, that they don’t regret their child. I think if you had a heart-to-heart with one of us (without the judging), you’d know the lessons we’ve learned from our children our irreplaceable. Yes, we would take away our child’s pain if we could. If only we could — but we can’t, and yes, we have accepted that. So instead, with as much strength and courage we can muster, we will support our child. We will hold their hands as their vein folds trying to get an IV in for the fourth time. We will help the nurses hold their head still while they place an tube down their nose and into their stomach. We will cradle and rock them while trying to keep our composure as the surgeon is giving more bad news. We will wait patiently for them to wake up from anesthesia. You’ll know a special needs parent when you see us. We’re the ones looking down at the notebook when we’re talking to our child’s surgeon. The notebook holds all the questions we don’t want to forget. We attempt to live this life with as much grace, courage and strength as we can. Encourage us, support us, lend us an ear if we need one. Don’t pity us. Follow this journey on Dear Dallas. The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to 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.