When You Face the Possibility of Losing Your Child Every Night Because of SUDEP

When I adjusted to becoming a new mom to my firstborn son Shayne, the hardest thing for me to get accustomed to was the lack of sleep. Having a tiny newborn demanding your attention every few hours was not easy by any means. I felt detached from the world, like a zombie barely surviving on copious amounts of caffeine and the advice from my family and friends who would tell me, “This too shall pass.”

Eventually, it did seem to pass. When he was a few months old we were able to move him to his own room, and he began to sleep for longer stretches. This new routine refreshed me, and made me feel like a real person again. Even just adding a few more hours of sleep each night made me feel like everything was going to be OK. The well-meaning advice I had received was true — the stage of being sleep-deprived was indeed only temporary. If I only knew at that point what would lie ahead.

At exactly 7 months old, everything changed when Shayne had his first seizure. My husband was holding him on the couch when all of a sudden he began to turn blue and started convulsing. We called 911 and spent the night in the ER, only to be told it was most likely an isolated incident. Three days later he had another one, and we knew our journey was just beginning. At 8 months old he was diagnosed with epilepsy. It was through our own research that we learned about something called sudden unexpected death in epilepsy (SUDEP). We were shocked the doctors had not warned us about this, and we quickly learned that Shayne was at an increased risk of SUDEP due to his age of onset and the fact that his seizures were uncontrolled. We read tragic stories of people saying goodnight to their loved ones, only to discover the next morning that they passed away unexpectedly during the night. This knowledge triggered a new kind of sleep deprivation in us — one in which we could hardly rest because we were so worried our little boy was going to be taken from us during the night.

Flash forward to when Shayne was a little over a year old, and we received the results of his genetic testing. They found a mutation in his SCN1A gene, and his diagnosis would eventually change from idiopathic epilepsy to Dravet syndrome — a lifelong disorder for which there is no cure.  Individuals with Dravet struggle with debilitating seizures that are extremely difficult to control with the currently available treatment options. This severe form of epilepsy has profound cognitive effects, and the majority require a lifetime of complete care. In addition to this, people with Dravet syndrome are at an increased risk of SUDEP, and there is a one in five chance they will not make it to adulthood. Now we were unable to sleep because we felt as if our son had just been given a potential death sentence. The overwhelming grief and worry we felt for his suddenly uncertain future was unbearable, and this lead to countless sleepless nights.

Fast forward a little more, to when Shayne turned 3 and everything changed once again. At this point he was still sleeping in his room independently, with multiple alarms set up to alert us if he were to have a seizure at night. The alarms started going off multiple times a week, and then every night, and eventually multiple times throughout each night. We would be jolted awake from our sleep by the frantic beeping of these alarms, only to look at the video monitor and see he was seizing. We would run into his room to help him, and stay with him until he recovered.  He developed a fear of falling asleep alone because he sensed the danger that would befall him each night. One of us would lay with him until he was sound asleep, then we would sneak out of his room, only to return multiples times throughout the night to care for him after his seizures. Eventually, we knew this routine was not sustainable, and it seemed the nocturnal seizures were here to stay. For the first time since he was a baby, we moved him back into our room with a bed right next to ours, so we could be able to respond to his multiple nightly seizures immediately.

This is where we currently remain, three years later. Every night we are jolted awake to the sound of him seizing, and most nights this happens several times throughout the night. I have found him seizing face-down into his mattress. I have had to jump out of bed in the middle of the night to administer oxygen and rescue medication for longer nocturnal seizures. I have had to roll him onto his side when he vomited after a seizure, so he didn’t aspirate. I have awoken suddenly for no particular reason, only to roll over to check him and find him cold and non-responsive. In those moments his entire life flashes before my eyes, and I fear this is the moment we have been dreading for so long. By some miracle, the few times that has happened, Shayne has come back to us. He was just caught in a rare state of extremely deep sleep. However, the fear that is realized in those moments haunts me, and it’s something that makes me sick to my stomach and can bring me to my knees when the memory hits me.

When I think back to those early days as a new mom, in my sleep-deprived zombie state, I remember staring at my perfect baby boy and telling myself that I loved him so much that I would never be able to handle it if something happened to him. When I look at the woman I am now, with the dark circles and the wrinkles and gray hairs, after years of facing my worst fears on a nightly basis, I wish I could turn back the clock. I wish I could tell that young mom to enjoy those quiet moments in the middle of the night with her newborn baby. I wish I could hug her and tell her that life was going to be so much more beautiful than she could ever imagine. I wish I could tell her that her love for her child would keep her going through all of the sleepless nights, and that she would eventually learn to appreciate the gift of today without worrying about tomorrow. I wish I could let her know that while sleep would still be hard to come by, the laughter and joy and love would be overflowing. I wish I could tell her that his quality of life would become her driving passion, and that she would push herself to find joy in each and every day.

Ultimately, the phase of sleeplessness did not pass for us, and it likely never will. However, being the resilient creatures we are, especially as the parents of a medically fragile and complex child, we have learned to adapt. We look at the perseverance he has each and every day, despite his many challenges, and that is where we draw our strength from. Our hope and drive to provide him the best life possible is what pushes us through. We fight for him and alongside him, and we will keep fighting until a cure is found.

the author's son laying on the couch with his service dog

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How to Create an Emergency Preparedness Plan for Your Child With Disabilities

Schools use drills and safety protocols to keep students safe at school, but, as The Mighty found, a majority of students with disabilities feel these guidelines don’t do enough to protect them. Few federal recommendations exist to keep students with disabilities safe from active shooters, but there are ways to prepare students for these worst-case scenarios. One way you can do this is by adding individualized protocols to a student’s individualized education plan.

An IEP is a federal document that outlines what a student with a disability needs to be successful in school. It is unique to each student and is reviewed at least once a school year by a team which consists of the parents, teachers, other school staff and potentially the student. Special education teachers Laura Clarke, Ed.D., and Dusty Columbia Embury, Ed.D., noticed that, while an IEP helps a student be successful academically and socially, it is usually lacking how to help a student during an emergency like an active shooter situation.

This led them to develop the IELP, or individual emergency and lockdown plan. Much like an IEP, an IELP is tailored to the student’s individual needs and supports. The IELP can be attached to a student’s IEP or 504 plan, which is similar to an IEP but for students who do not necessarily need specialized instruction but require additional supports to receive an education similar to the general student population.

IELPs are a collaborative effort between parents, teachers, students (if they’re old enough) and possibly the school nurse or counselor depending on the needs of the student. Columbia Embury said when administrators and the district review safety and preparedness plans for the school as a whole, they should be talking to the parents of students with disabilities to help protect their children.

A child’s IELP should include everything they need to stay safe during a drill or crisis situation. Students with intellectual disabilities may need to practice drills more than the general school population, who typically perform two drills per year. Practice should also be held in diverse locations — classroom, gym, cafeteria, etc. — if it is hard for the student to take what they learned in one setting and apply it in another.

If a student needs access to medication throughout the day, it may be best to keep it in the classroom or with them instead of only in the nurse’s office because lockdowns can last for hours. If a student is on the autism spectrum and tends to become vocal during stressful times, an IELP could include supports such as sensory items to help keep the student calm.

“Everybody can’t always know the right thing to do all the time, but that’s why we have so many resources, and our biggest resources that are often overlooked are the parents and caregivers of these students,” Columbia Embury said. “They have a tremendous amount of experience and knowledge because they’ve had to learn from the time that they got a diagnosis or before all the way through school. They’ve had to advocate for their students the whole time, so they have a pretty good sense of what they need.”

To help parents and students develop an IELP or preparedness plan, The Mighty has included a list of questions and considerations to use during their next IEP meeting. The information is adapted from Clarke and Columbia Embury’s “Teaching Exceptional Students” article, which provides a checklist for teachers and a sample IELP.

Safety Checklist reads: Does the plan accommodate the student's physical needs? How will the student get down the stairs or out of the building safely? Does the student have medication they need to take? Is the medication they need always with them or in all of their classrooms? Has an aide or staff member been assigned to help the student evacuate safely? Is the student's aide aware of the plan? Has the plan been practiced with the aide or any other educators the student works with? Does the student understand the plan? If comprehension is an issue, what can be done to help prepare the student? Are the student's sensory needs accounted for? What is in place to prevent sensory overload during an emergency? Can the student communicate verbally? If not, what measures will be taken to make sure they can communicate effectively? Does the student need emotional or behavioral supports to cope during a crisis? How can educators ensure they have the tools they need on hand during an emergency?

After answering these question during your IEP meeting, you and the other members of the IEP team should decide how best to meet these needs. This could include an “emergency kit” the student carries with them during the school day or leaves with their aide/teacher. It could include sensory items, medications, communication aids or devices, etc.

Once an IELP is developed, it is a good idea to inform emergency personnel such as law enforcement and first responders of the plan each year. Parents should also inform police of their child’s limitations, so if they can’t comply with protocol, they aren’t seen as a threat.

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What I’ve Learned as a Filmmaker With Cerebral Palsy

I’m an emerging filmmaker who has cerebral palsy and my film, “The Milky Pop Kid,” has been selected for the ReelAbilities Film Festival NY 2018.

I live in Sydney, Australia, and my interest in filmmaking started when I was in a study-abroad program in 2014 at the College of St. Benedicts, Minnesota. After completing the program I desperately wanted to work in the film industry, and my film studies lecturer suggested I go to film school.

When I returned to Sydney I got into a film course at Metro Screen, and over the course of my studies I came to learn how difficult the film industry can be. Our teachers stressed that we needed to be passionate and hardworking to make progress, and I was also acutely aware that as a person living with a disability there would be many, many challenges and setbacks to being able to find a job in industry. At the time I didn’t know many people living with disabilities working in the industry. At the end of the course I got an internship at Screen NSW (now Create NSW), the state screen-funding agency.

filmmaker with cerebral palsy giving direction

It was during my internship that I found Information and Cultural Exchange (I.C.E.). I.C.E. was running a program called “My Life, My Art” for emerging filmmakers and Screen NSW suggested I meet I.C.E.’s Screen Cultures Producer, Barry Gamba. After meeting, Barry invited me to be one of the filmmakers in the program. “My Life My Art” asked filmmakers to profile an artist living with a disability in a short film. I immediately thought of my friend Emily Dash; she is an incredibly talented writer, actor and speaker who, like me, lives with cerebral palsy.

Emily was keen to be involved, and we met with Barry to talk about themes for the film. Emily and I were most passionate about authentic casting of people with disabilities. Seeing characters living with disabilities played by able-bodied actors always frustrates Emily and me, and together we agreed this would be a fantastic concept for a short film.

We wanted to tell a story about a person with a disability who is asked to be a consultant for an able-bodied actor who has been asked to play a character with a disability. The idea was that we could really look at the power play between the two actors. The story would explore this and other issues around access for people with disabilities. One issue we examined, which was dear to our hearts, was the use of a person with a disability as a “consultant.” This is often seen as a charitable thing to do.

Barry suggested Tel Benjamin to play our somewhat clueless actor. Tel understood what was needed and was enthusiastic about being a part of the film.

We had many script-development sessions, and one of the ideas came from a school experience I’d had when I was developing a group piece for drama around the lived experience of disability. Someone had suggested I position my tongue in a certain way to “sound disabled.” I remember feeling incredibly uncomfortable about doing that. We wanted to explore this in our film and use satire to highlight complex ideas. Throughout the script-development workshops I would ask Emily and Tel questions, and they would improvise as their characters. It was a safe space for everyone to work and create together.

Not only did I learn a lot from the making of “The Milky Pop Kid,” the experience showed me that as a person living with a disability I can work in the film and television industry. I can be an advocate for issues I feel strongly about and use humor to get a message across.

ReelAbilities Film Festival is the largest festival in the U.S. dedicated to promoting awareness and appreciation of the lives, stories, and artistic expressions of people with different abilities. Founded in New York City in 2007, the festival presents international and award-winning films by and about people with disabilities in multiple locations throughout each hosting city. Post-screening discussions and other engaging programs bring together the community to explore, discuss, embrace, and celebrate the diversity of our shared human experience.

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What It’s Like Going Hiking With a Sun Allergy

I love hiking. My ultimate happy place is the summit of the Empire Bluff trail in Sleeping Bear National Park.

Unfortunately, hiking doesn’t always love me back.

I’ve learned that covering is easier than sunscreen — so I wear UPF 50+ gear while I hike, and only apply sunscreen on my face, neck and hands as a backup. I use LaRoche Posay SPF 60 combined with Neutrogena Broad Spectrum 100+. I use Under Armor Heat Gear tights to prevent heat exhaustion and typically wear their Pro Cool line tops for the same reason. I’m too small for their littlest size of tops, so I typically wet them manually with a water bottle to activate the cooling material, since they don’t fit snugly enough to be wet with my sweat. I carry a cooling scarf and typically wear it around my forehead. I carry a parasol with UPF 100+ protection.

At the start and end of each hike I find shade, sit down, take off my running shirt and drench it fully in water. I do the same thing sporadically throughout the hike if I’m going more than three to five miles.

I drink a lot throughout and make sure I can get my blood sugar back up immediately afterwards (room temperature coconut water doesn’t taste great but it definitely helps!)

I make sure I go with people I know and trust who are used to what my reactions look like and will check on me to make sure I’m not overheating or reacting.

I make sure to take one of our two cars with my window film so I have a “safe space” immediately before and after I hike.

I try to go to trails that have a visitor center available at the trailhead so I can get serious shade and air conditioning without waiting for a hot car to cool down.

And I don’t make plans for afterward, because I will have a reaction if I hike — so I need to plan accordingly for recovery.

When I get back I sleep, I soak in Epsom salts or a hot tub if I can, and I eat whatever sounds like I can handle it right then (grilled chicken, rice and veggies or avocados, toast, and a smoked protein are my go-to recovery meals).

I can still have my fun, even with a sun allergy.

All it takes is a little creativity.

the author with her UV umbrella in the woods

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When My Daughter’s Friend Called Me ‘Fat’ While I’m on Prednisone

This morning my daughter bravely told me that one of the kids at school called me fat. She was so scared that it would hurt my feelings. She told the other kid that she was offended. I was very proud of her. I was also grateful I’d already had a conversation with a friend of mine about this very issue earlier this week, so I was prepared to help my daughter navigate this tricky discussion. Thankfully though, I have done my own emotional work on this topic; therefore, I was ready to engage without reacting with anger or sadness. Let me explain.

I feared being called fat my entire life. It was the root of my eating disorder (I was anorexic/orthorexic/exercise bulimic and less than 115 pounds for more than 15 years).  It was a deep awareness that the contract of my marriage was based upon me looking a certain way. It was seeing myself through a male lens that expected me to be small. It was a craving of the attention I’d receive if I was considered attractive to men. It was allowing boyfriends and partners to constantly comment on my body, including what they liked and didn’t like…and even allowing them to say things to me like “don’t ever get fat.”  As I have entered my 40’s, I am still shocked at the things I allowed men to say to me over the years.

But the rabbit hole goes deeper. In my former life, there was something worse than being called fat. Being sick, and unable to maintain my break-neck level of performance, was much worse. There was an unwritten time limit for being sick. If the limit was hit, then relationships were at risk. I learned to use my bootstraps to pull myself back together. After sustaining a life-changing traumatic brain injury (TBI) bootstrapping it was no longer an option. I had to face my worst fears of all — gaining weight, being, sick, disabled and unable to work. And yes, I lost my marriage in addition to a few other relationships, but I gained something more important: I found myself.

In the years since the TBI, my life has changed completely.  I’ve had many opportunities to face my own issues with feeling worthy and lovable regardless of my health, ability and physical appearance. It’s been a very humbling journey. Through it all, I’ve learned that I’m fundamentally lovable. We all are. There is absolutely nothing that I (or anyone else) has to do to be worthy of love. For this lesson, I am deeply grateful.

Right now, I’m sick. I have limitations. Yes, I’m fat and swollen and I don’t look like myself. I’m on high dose of prednisone for an undiagnosed autoimmune condition in addition to adrenal insufficiency. I am also healing from a neuromuscular condition that has leveled me over the last year. I’m currently taking in the antibodies of thousands of people through IVIG treatment — and it’s working! But yes, my body shows that I am sick. It’s exactly the same as if I had lost hair due to chemo treatments. I’m healing and I’m willing to surrender to the wisdom of my body in the present moment with gratitude.   

I have finally released the need to control other people’s perceptions, as they are a reflection of who they are, not a reflection of who I am. And that is freedom.

the author riding a horse with her arms in the air

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30 Quotes to Read If You’re Having a Hard Day

Quotes have always been a source of comfort for me. They affirm that others are challenged by hardship too, and are confronting and questioning the same truths I am. Our stories may be unique, but how we survive is not. I hope you are able to recognize yourself in words from the voices of others, and feel closer to the universal truths of what it means to be human. I hope these quotes bring comfort to you as well.


“You let time pass. That’s the cure. You survive the days. You float like a rabid ghost through the weeks. You cry and wallow and lament and scratch you way back up through the months. And then one day you find yourself alone on a bench in the sun and you close your eyes and lean your head back and realize you’re okay.” – Cheryl Strayed

“If you can’t fly, then run, if you can’t run, then walk, if you can’t walk, then crawl, but whatever you do, you have to keep moving forward.” – Martin Luther King Jr.

“In the midst of winter, I found there was, within me, an invincible summer.” – Albert Camus

artwork by the author with a quote by albert camus that says 'in the midst of winter, I found there was, within me, an invincible summer'

By Christina Baltais

“You go on by doing the best you can. You go on by being generous. you go on by being true. you go on by allowing the unbearable days to pass and by allowing the pleasure in other days. You go on by finding a channel for your love and another for your rage.” – Cheryl Strayed


“The woman whom I love and admire for their strength and grace did not get that way because shit worked out. They got that way because shit went wrong, and they handled it. They handled it in a thousand different ways, but they handled it. Those women are my superheroes.” – Elizabeth Gilbert

“Sometimes when you’re in a dark place, you think you’ve been buried, but you’ve actually been planted.” – Maya Angelou

“Strength does not come from physical capacity. It comes from an indomitable will.” – Gandhi


“And here you are living, despite it all.” – Rupi Kaur

“Still, I rise.” – Maya Angelou

“Do not judge me by my successes, judge me by how many times I fell down, and got back up again.” – Nelson Mandela

“My mission in life is not merely to survive, but to thrive: and to do so with some passion, some compassion, some humor, and some style.” – Maya Angelou


“Do not lose hope, please believe that there are a thousand beautiful things waiting for you. Sunshine comes to all who feel rain.” – R.M. Drake

“We must accept finite disappointment, but never lose infinite hope.” – Martin Luther King Jr.


“Embrace uncertainty. Some of the most beautiful chapters in our lives won’t have a title until much later.” – Bob Goff

“Faith is taking the first step even when you don’t see the whole staircase.” – Martin Luther King Jr.

“When fear knocks, let faith answer the door.” – Robin Roberts


“I can be changed by what happens to me but I refuse to be reduced by it.” – Maya Angelou

“Don’t surrender all your joy for an idea of yourself you used to have that isn’t true anymore.” – Cheryl Strayed


“She stood in the storm, and when the wind did not blow her way, she adjusted her sails.” – Elizabeth Edwards

“It is not the strongest of the species that survive, nor the most intelligent, but the ones most responsive to change.” – Charles Darwin

“If you can’t go around it, over it, or through it, you had better negotiate with it.” – Ashleigh Brilliant


“I used to see a butterfly in my mind’s eye every time I heard the word transformation, but life has schooled me. Transformation isn’t a butterfly. It’s the thing before you get to be a pretty bug flying away. It’s huddling in the dark cocoon and then pushing your way out. It’s the messy work of making sense of your fortunes and misfortunes, desires and doubts, hang-ups and sorrows, so you can go on and become the person you must next become.” – Cheryl Strayed

“The art of life is not controlling what happens to us, but using what happens to us.” – Gloria Steinem 


“Grief is like the ocean; it comes in waves, ebbing and flowing. Sometimes the water is calm, and sometimes it is overwhelming. All we can do is learn to swim.” – Vicki Harrison

“Grief changes shape, but it never ends.” – Keanu Reeves

“It’s turning the thunder into grace, knowing sometimes the break in your heart is like the hole in the flute. Sometimes it’s the place where the music comes through.” – Andrea Gibson

“I’ll never know and neither will you about the life you didn’t get. We’ll only know that whatever that sister life was, it was important and beautiful and not ours. It was the ghost ship that didn’t carry us. There’s nothing to do but salute it from shore.” – Cheryl Strayed

“What is stronger than the human heart which shatters over and over and still lives.” – Rupi Kaur


“Where you are, is not who you are.” – circumstances

“Sometimes the most healing thing to do is remind ourselves over and over and over, other people feel this too.” – Andrea Gibson

Have a good quote that helps you? Be sure to share it in the comments down below!

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How My New Puppy’s Keen Sense of Smell Saved My Life

My new Basset Hound puppy, Bailey, was getting used to her new surroundings after she was brought home. I noticed that she really had a keen sense of smell because once she found a scent, she stayed on it until it led her to the source. On one particular day, she was going after my right knee by nipping at it. Every time I’d tell her, “No!” she’d stop and then go right back to the same area over and over again not giving up and more determined than ever to nip harder. It got to the point where I decided to see what all of the fuss was about. Was something stuck to the back of my kneecap that got her interest?

basset hound puppy

When I checked the area she was so insistent on going after, I felt a lump the size of a tennis ball behind the right kneecap. I immediately called my
doctor and told her what I had found. She had me come in for a STAT doppler and then told me to come to her office afterwards for the results. I was a little worried as I had DVT (deep vein thrombosis) in the past in the right leg.

basset hound puppy curled up on a bed

It turned out that I had a huge blood clot starting at my groin area going well past my knee cap. Dr. R. asked me how I knew enough to call right away. I told her that my Basset Hound kept going after the site for a few days and wouldn’t let up. She then stated Bailey had saved my life. If it had gone unnoticed, the clot would’ve blocked the blood flow completely in my entire leg and there would’ve been serious complications.

an outdoor sign for the basset hound ranch

I’ve often heard of dogs finding cancer in their owners by pawing or licking the area in question. I never expected it would happen to me. I informed Janice, the owner of The Basset Ranch, that she should change the name of her business to “Bassets MD” because their nose “knows” more than we know.

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