Lori Butierries

@lori-butierries | contributor
AUTHOR BIO: Lori Butierries is a full-time caregiver to two children with disabilities. She uses her life experiences and the medical knowledge she gained from serving as a Hospital Corpsman in the United States Navy to help others facing similar hardships. Lori is an author for The Havok Journal, an official columnist for AwareNow Magazine, and a contributor to The Mighty. Likewise, other news sites like MSN and Yahoo! News have also republished select articles Lori has written. Lori's writing extends to children's literature. Her debut picture book, GIFT FROM GOD, was self-published at the beginning of 2021 and placed as a finalist in two categories in the 2021 Next Generation Indie Book Awards. Lori aims to use her writing to educate others about, advocate for, and dismantle negative stereotypes regarding disability, mental health, and the military/veterans community by talking about these topics with people of all ages.

When the School Photographer Offered to Hide My Son's Wheelchair

Ever since I was a little girl, I have looked forward to taking school pictures every fall. That is still the case even though I am a parent now. I eagerly anticipate getting copies of my own children’s pictures each year. I adore seeing how much my kids have grown and matured over the years and how they express their personalities through their facial expressions and clothing. I fondly remember how my mother would wash and blow-dry my and my sister’s hair on the night before every picture day. Then the three of us would take turns sitting cross-legged in our nightgowns before the TV in the family room as our mother painstakingly rolled our long hair with sponge curlers into neat rows on top of our heads. Later that same night, I would toss and turn in bed from the discomfort of the sponge curlers pulling my hair tight and from the hard plastic of the clips holding the sponge curlers into place, digging into my scalp. However, the excitement of getting dressed up the next day always made the pain bearable somehow. On the day of the school photoshoot, I would wear my current favorite dress that I had set out the night before, and proudly smile into the camera while feeling like a model with my fancy curly hair framing my face. The process was the same each year until high school. Likewise, when my daughter was in elementary and middle school, she allowed me to carry on those same traditions with her, too, until dressing up and wearing sponge curlers lost their appeal once she started high school as well. For my son, Jacob, picture day is another story entirely. The urgent need to capture and retain his image drives me with relentless desperation. It is not a fun annual event that takes place each school year as much as it is proof that Jacob is still alive and doing well. You see, my son was born with a terminal and degenerative disorder called spinal muscular atrophy (SMA) type I. There is no cure for this disorder, but there are new treatments, like SPINRAZA, available to slow down the rate of the disease’s progression. As a result of Jacob receiving SPINRAZA, and because of the exceptional medical care he has received over the years and the precautions taken to limit his exposure to germs, Jacob has miraculously outlived the neurologist’s initial prognosis by 10 years. However, the eventual outcome hasn’t changed. So, each year that Jacob continues to thrive and meet new developmental and academic milestones not previously expected is a year worth celebrating and one that I don’t want to forget. This year, Jacob is in seventh grade. That is a huge accomplishment considering he wasn’t supposed to make it to his second birthday — which is why, on the morning of picture day this year, I was feeling extra blessed to be able to get my son ready for the big occasion. That morning, Jacob watched as I pulled shirt after shirt out of his closet for his perusal from the comfort of his medical bed. After reviewing all the choices displayed, Jacob verbally indicated his preference for the day — “The red one.”  Red is Jacob’s favorite color. I love that he conveys that fact through his choice of apparel. Afterward, Jacob’s home health nurse reclined the medical bed’s head to do his morning hygiene routine, followed by his respiratory treatments. Meanwhile, I got his wheelchair and G-tube feeds ready for the trip. When we were ready to go, Jacob and I counted to three together before I lifted and transferred him to the wheelchair waiting in the hallway outside his bedroom door. As the nurse and I strapped Jacob into his wheelchair, he happily asked, “Am I going to make new friends today?” Tears pricked my eyes when I told Jacob that the world was still sick (i.e., COVID-19), so we wouldn’t be able to meet any other students today. Jacob’s smile momentarily faded away, but thankfully it soon reappeared once we left the house to head to the school campus. As a safety precaution, because a common cold can be fatal to Jacob, the middle school administration arranged for Jacob to be the first student to get his picture taken that day. We arrived at the designated time, despite the stop-and-go rain shower slowing down traffic to a crawl. Nevertheless, not even the bad weather could dampen our good moods as we parked and then headed into the school cafeteria that housed the makeshift photo studio. My daughter and Jacob’s nurse had to stay in the van because the new pandemic protocols that the state put in place limits the number of people that can congregate in the same room at one time. So, the photographer, Jacob, and I were the only ones in attendance, and we got right down to business. Let me preface this next part by saying that I am not upset with the photographer. He was kind, considerate and professional throughout our entire interaction with him. I simply got caught off guard by the question he asked me. “Do you want me to hide your son’s wheelchair? We can drape a sheet over it or something if you want.” No one had offered something like that to me before, so it stunned me into a confused silence for a minute. Eventually, I smiled and politely declined his offer, but inside, something hot and painful began to burn in my chest. The question hurt my heart. Don’t get me wrong, I know why I was asked the question, and I can even appreciate how awkward it must have been for the photographer to make in the first place, but that doesn’t settle my disquieted soul. Maybe it wouldn’t have bothered me so much if this wasn’t already a touchy subject for my son and me. I love Jacob’s wheelchair because I see it as a tool that allows my son to access the world around him. Unfortunately, Jacob hates his wheelchair. It angers him that he cannot walk on his own two feet like other kids his age can, and he constantly tries to wish away his disabilities and limitations. The wheelchair doesn’t define who Jacob is, but it is part of his life. I don’t want to pretend otherwise. I am not ashamed of Jacob’s differences; I only wish that Jacob felt the same way. But I think questions like the one that the photographer asked could have a devastating effect on how Jacob perceives himself or how he thinks the world views him, no matter the good intentions behind the question. It is a race against time to stop Jacob from developing the conviction that his wheelchair is a cage instead of something that frees him. It is hard enough to have to fight ableism within the walls of my own home as I try to help my terminally ill, disabled and autistic son learn self-acceptance, as well as to assist him with cultivating a grateful heart, but it was an unnecessary and heartbreaking hardship to have to combat on picture day too. All I can say is that picture day will never be the same again.

A Thank You Note From a Mom of Children With Disabilities

Dear Friend, Thank you. Thank you for accepting me as the hurting and flawed human that I am. Thank you for not making me feel like a social pariah or treating me like I’m cursed because I have disabled children. Thank you for offering help without making me have to beg you for it. Thank you for not making everything a comparison contest. Thank you for finding my family worth your time. Thank you for treating me like a person like anyone else, with regular hopes and dreams. Thank you for letting me cry on your shoulder. Thank you for being willing to defend me when I am not around to stand up for myself. Thank you for not being mean to my children. Thank you for making me laugh! Thank you for calling me to talk about the day and what’s on your mind — it’s nice not to always talk about me. Thank you for just stopping by because you were in the neighborhood. Thank you for the meals you prepared and dropped off for my family while my son was in the hospital. Thank you for always wanting to assist us in any way that you can. Thank you for not being afraid of our circumstances and for supporting my son and spreading spinal muscular atrophy (SMA) awareness every chance you get. Thank you for seeing a need and then silently meeting that need. Thank you for not mocking or minimizing my fears. Thank you for not writing me off just because we had a disagreement. Thank you for making allowances for my hectic appointment schedule, even when it’s not always convenient for you to do so. Thank you for all your prayers and for not trying to pray my daughter’s autism away. Your prayers only ever made my kids and I feel loved and cared for. Thank you for inviting me out to dinner, to the movies, to the salon to get our nails done, etc. I couldn’t always accept the invites, but I always appreciated the offers and that you never stopped making them. Thank you for being willing to listen to me rant and rave about the things that make me mad or the wild things going on in my life. Thank you for visiting my son while he was admitted to the hospital. Thank you for the donations and “love offerings” when my husband and I were fundraising for a wheelchair-accessible van. Thank you for making sacrifices of your own to help my family out. Thank you for every thoughtful word, look, gesture, gift, etc.  They didn’t go unnoticed or unappreciated. “Thank you” could never convey the depth of my love or the magnitude of the gratitude that I feel for you, but please know that I am honored to have someone like you in my life, and I thank God for all the people that I can call “friend.”

What Bedtime Looks Like for a Medically Complex Child

Bedtime is never just telling my son, “Good night.” It is administering multiple medications to aid in sleep and to help with the pain. It is starting overnight g-tube feeds to keep hypoglycemia at bay. It is giving tickles down my son’s arms and legs, scratches on his head that he can’t reach because of his limitations and disabilities, and then laughing at something outrageous or funny that he said unexpectedly. It is ensuring there is no shame to be had when my 13-year-old son asks for help with his toileting needs. Once cleaned, it is storytime, and we will read the same Batman comic book as the prior evening because my son is autistic, too, and likes routine. It is hugs on his side until I am about to fall asleep, lying draped over my son, standing upright beside the bed until he is done with me, and I get dismissed to leave. Before turning out the light, my son will remind me not to forget to put on his Bipap and sleeping mask; I will lean down to give him extra kisses for being such a big help and advocate. On the way out, it is checking the closet and underneath my son’s medical bed for monsters, only to be stopped with one foot out the door to engage in a quick conversation about Good vs. Evil and how he will one day change the world. It is dreaming out loud and enjoying the vision. It is a last-minute request for another position change until my son’s legs and dislocated hips no longer bother him, at least for the moment. Then, it is dozing in the recliner outside my son’s bedroom door, just in case. Only to be woken shortly to the cry of, “Mommy, I need a drink!” It is counting down the hours until the nurse arrives in the morning to give me a break while at the same time looking forward to waking up to see the sweet smile on my son’s face when he greets me the next day. It is tiptoeing down the hallway to the master bedroom once my son is finally asleep and then pushing the dog out of my spot on the mattress, followed by a frustrating game of tug-of-war as I wrestle for covers while trying not to wake my spouse up because he has to go to work in a few hours. It is double-checking the alarms on my cell phone so that I don’t miss administering my son’s next dose of meds. It is lying awake going over the mental to-do list inside of my head until I am too anxious to sleep, so I stay awake reading a book or posting on Instagram or Facebook instead. No, bedtime is never just saying good night when you have a medically complex kid, but that’s OK, because in between the hardships and chronic sleep deprivation, we make the best out of our situation and strive to enjoy the blessings.

Alaura Filbin

Why I Love My Shirt From The Mighty

As a frequent contributor for The Mighty, I requested a Mighty t-shirt and was ecstatic once it came in the mail. Since then, I have worn the shirt quite often, partially because it’s comfortable and made of soft fabric, but also because the shirt has gained its own meaning for me. The shirt is bright red, just like the logo for the website, which makes it easy to spot in the closet, in the laundry or in a crowd. As some people may know, the color red can be symbolic of strength, power, determination, passion and sometimes even courage. At least to me, the color red is quite appropriate for The Mighty’s contributors and readers. Are we not strong and powerful for telling the world we matter and that our experiences are valid? Are we not determined to show the world that our illnesses, disabilities and diagnoses are not something to be ashamed of? Are we not passionate about showing our solidarity with others who have similar experiences? Are we not courageous for telling the world “I have XYZ” even in the face of misunderstanding and stigma? Another reason I love wearing this shirt is because it makes me feel like I’m publicly embracing my illnesses — I have depression, anxiety, dermatillomania and migraines — but at the same time, it gives me comfort to know that the shirt is subtle enough where people won’t confront me about what illnesses I have. I am not ashamed to have my illnesses, but I enjoy having agency over what I reveal, when I reveal it, and to whom. Also, as someone who was unable to stay home on the Day Without a Woman, I was able to wear my bright red shirt in solidarity with women all across the globe while simultaneously showing my solidarity with people in the Mighty community. It’s particularly empowering to know I can take part in a global protest just by wearing this shirt, particularly in the current political climate, where many of us are terrified about the future of our well-being. Finally, I love seeing the looks on people’s faces when they recognize the shirt, whether they’re also contributors or readers. I have friends who contribute and I have come across strangers whose eyes have lit up when they read “The Mighty.” It’s a great feeling either way. I’m proud to be a part of The Mighty. I’m proud to face my illnesses. I’m proud to be able be a voice with others who deal with the same things as I do. I’m proud to wear my shirt. We want to hear your story. Become a Mighty contributor here .

Cesarean Awareness Month: All Birth Is Natural

It’s probably one of the most off-putting and covertly judgmental questions one mother can ask another. “I gave birth naturally. How about you?” For years I struggled with feelings of shame for being unable to deliver either of my children “naturally” (a.k.a vaginally). Especially whenever another woman asked me to share my delivery stories. I could not shake the thought that I had failed as a woman or was less of a mother for missing out on the experience or right of passage of pushing my children out of my body. It wasn’t until my sister shared a simple perspective on birthing that my heart’s invisible wounds, left festering from my previous cesarean section surgeries, finally began to heal. She told me, “If a baby came out of your body, then it was delivered naturally.” I cannot tell you how much peace of mind those words brought me! The truth of her statement provided me with some much-needed clarity. Like every other pregnant woman, my body grew and nurtured those little human beings for nine months each (on two separate occasions). When it came time to deliver my children, I had to endure a different type of physical sacrifice to bring them into this world. My C-sections were no less miraculous or wondrous than the lady laboring in the bed down the hall from the OR where I was being cut open. Anyway, I said all that to say this, everyone’s birthing stories will differ, but, in the end, they are all equally amazing and worth celebrating. It is an honor to be able to bring life into this world, and I refuse to tarnish that gift of ability with baseless self-recriminations that hold no weight in the real scheme of things. I pray that other C-section mommas wrestling with the same poisonous thoughts and feelings that I once had will eventually come to the same conclusion one day too.

Siblings of Medically Complex Children Are Awesome

I read a Facebook post today that stated, “Siblings of medically complex children are extraordinary.” I agree wholeheartedly with that sentiment, especially when I think of my daughter. As the oldest of two children, my daughter takes on responsibilities that her brother doesn’t, either because of his age or due to the severity of his disability. But that doesn’t seem to bother her. She once told me, “I’m your biggest helper,” and she was right. However, I don’t think my daughter, or anyone else for that matter, knows the extent of the ways she positively impacts her brother’s life or mine. For instance, my daughter has brought me tissues and tried to dry my eyes [for me] many times over the years, even though I was attempting to grieve in private. She worries and seeks to comfort me when I am in distress — even if I am crying in the shower. My daughter has told me, with the confidence of innocence, on countless occasions, mostly when her little brother was at his sickest, “Don’t be sad, Mom. Everything will be OK.” My daughter once confessed, “I prayed to God because I was so scared!” because she didn’t know if her brother was going to survive his latest hospitalization or not, but she believed in the power of prayer and that God would answer hers. He did. My daughter has spent so many days hanging out at the hospital with her brother and me that she has memorized all the floors and walkways to get to the various clinics and wards in the massive facility. Hence, she takes pride in pushing the buttons on the elevator or directing us to our destinations. My daughter quietly listens as I speak to her brother’s doctors, and then, when we are alone, she asks me questions to gain further understanding of the confusing and serious things the doctors and I discussed that day. My daughter still plays with dolls, and sometimes I catch her doing “medical play” as she tries to process her life out loud. Her use of medical jargon is impressive in its scope and accuracy. My daughter always responds with, “That’s OK, Mom, it’s not your fault,” when I have to cancel another fun outing or break another promise to her because something with her brother came up that took precedence over our previous plans or because I was just too tired to do anything above the bare minimum that day. She understands our life is often exhausting and hard on the heart, mind, body and soul. When the 8:00 p.m. alarm goes off every night, my daughter jumps up from the couch to grab her brother’s bedtime medications and the container of water to mix with his overnight G-tube feeds to take them back to his bedroom for me. My daughter has always enjoyed being part of her brother’s care whenever and however she can, even if she doesn’t want to play with him anymore because she is a teenager now. My daughter has developed an anxiety disorder due to all that she has seen and experienced firsthand, and she has a morbid fascination with and fear of death. The last time she brought up death, she said, “When you die, you’re just gone, and then no one talks about you anymore.” It hurts to know that my daughter’s childhood has been just as traumatic as her brother’s, especially because my daughter has disabilities of her own, like autism, to deal with. But, I am grateful to see how our life has helped to shape my daughter into a kind, compassionate, helpful, protective and tender-hearted person. May that never change. I said all that to say this: siblings see and go through so much, and they deserve to be recognized for what they endure and for the sacrifices they make too.

How Rare Disease Day Helps to Destigmatize Disability

“ Your retarded boy is lucky that you don’t put him away [in an institution]. That’s what they do in my country. ” Shocked speechless by the comment and unsure if it was supposed to be a compliment or not, all I could do was stare after the elderly man as he got up and walked away from the bench we had been sitting on, side by side. That was my first encounter with someone that viewed disability as a shameful disgrace that needed to be hidden from polite society, but sadly, it was far from my last. Living on an island, far away from home, made me have to reach out to other military spouses for support after my son’s diagnosis. Unfortunately, when the rubber met the road, and I took people up on their offers of help, I discovered that most people we knew were afraid to get involved. One friend in particular flat out told me, “ Your life is too sad. I cannot be friends with you anymore.” I appreciated her honesty, even though it hurt because I would have been even more devastated if she would have disappeared from my life without an explanation. However, I cannot help but wonder how different our relationship would have turned out if she had taken the time to learn that regardless of my son’s visible disability, he was still a normal kid on the inside. My son has the same hopes and dreams as other little boys his age and is worth getting to know as a person. Over the years, I have had multiple disturbing run-ins with people who were afraid of, didn’t understand, or were unable to recognize disability. For instance, once, I had an angry note left on the windshield of my van stating, “ Don’t look physically handicap to me. Have a nice day! ” I couldn’t help but burst into tears when I read those words. The person that watched me lift my terminally ill and completely disabled child out of the vehicle parked in the accessible parking spot overlooked an important detail that day. I was strapping my son into an adaptive stroller (i.e., a wheelchair) when children his age usually walked independently — I guess they didn’t know that kids could be disabled too. Likewise, strangers have had no qualms stopping me while shopping to tell me that my son was too old to be in a “stroller” and that I should not encourage his laziness. Little did they know that my son would like nothing better than to walk on his own, but that’s wasn’t possible no matter how many times people reprimanded him or scolded me. Even well-meaning church members have not hesitated to dish out painful and unsolicited advice like, “ If you believed enough, then your son would be healed ” without considering for a second the mental or spiritual damage that those words could cause. There is nothing wrong with my faith. If I did not have the hope that Christ offers, then I would have become lost in grief a long time ago. However, I know that sometimes bad things happen to good people, even kids, and not everything can be prayed away. Also, “No” is an answer too. I think people forget that fact. Now that my son is older and his physical disabilities are more pronounced, the number of harsh parenting critiques I get has lessened significantly. Unfortunately, people have switched gears and gone the opposite route by choosing to avoid looking at or talking to my son or me instead. Why? Why do people’s responses to disability have to be so unpleasant and extreme? Why is society, to include the military population, repulsed by or ashamed of people with disabilities? Also, how do we change that? I think the answer is simple — exposure. People only know what they know. They cannot grow as individuals or gain new perspectives if they are never introduced to topics that make them think. As such, I have made it a personal goal to help destigmatize disability by talking about it with people of all ages, whether verbally or through my writings. Speaking of advocating for the disability community, I like to use opportunities like Rare Disease Day (which takes place on the last day of February each year) to raise awareness about conditions that most people have never heard about, like my son’s condition, spinal muscular atrophy. Unique calendar events like Rare Disease Day allow me and others like me that are involved in the disability community to initiate conversations that will hopefully positively impact the hearts and minds of those that hear our words. I want to appeal to anyone else directly or indirectly associated with the disability community to use opportunities like Rare Disease Day to do the same. Do not be afraid to speak up and share your stories. The only way to change the narrative that disability is ugly is to show your friends, family, or strangers how it can be beautiful, too, despite the challenges. Silence breeds shame; let’s stop shame from spreading and infecting the next generation by doing our part as fellow human beings to support the inclusion and acceptance of people with disabilities or rare conditions across every spectrum of life.

To the Neurologist Who Diagnosed My Son With SMA Type I

Twelve years have passed since my son’s Diagnosis Day (D-Day). However, I remember you for many positive reasons beyond that nightmarish moment in time when you told my husband and me about the terminal and degenerative condition called spinal muscular atrophy (SMA) type I that altered our lives forever. Because of your initial guidance on D-Day, I am the parent and advocate that I am today. You showed me early on how to take control of a seemingly hopeless situation. First, by allowing me to grieve the loss of what might have been regarding my son’s future. Then, by helping me focus my time and attention on the things I could pursue to improve my son’s overall quality of life. When life suddenly upended on D-Day and didn’t make sense anymore, you grounded me to reality. You gave me direction and purpose as a parent and caregiver instead of merely telling me to go home, love on my child, and wait for his inevitable death, as projected by the prognosis. Thankfully, you offered alternate suggestions. Through your words and actions following that fateful day and during follow-up appointments, God showed me that sometimes we could not change our circumstances, but we can alter our perspectives, which is equally useful. Why? Because life is not fair to anyone. To think otherwise is to set yourself up for failure. Life does not care if you are a “good” person or if you are a child. It is people like you that help make the bad times more bearable and show others, like me, how to make the best deal out of the cards dealt them. Thank you for that. Likewise, thank you for showing me how to create beauty from ashes by rolling with the punches and picking battles I could win. Also, thank you for showing me how to navigate the medical and disability care systems to benefit my family in the here and now and the longterm. You were more than just another medical provider in the long list of specialists that have taken care of my son over the years. To me, you were a guardian angel in disguise. I hope that others see and appreciate their angels on earth too. Regardless, Doc, may you and others like you get the praise you deserve today and always, now and in the future. We (We being parents like me) see you, and we value you even if you and your peers don’t know it. In particular, I pray that you never worry about the legacy that you will leave behind because kindness is eternal, and I will keep paying it forward, as demonstrated by you. Thank you for being a person worth emulating.

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