Travel, the Quest for a Trophy and Disability

We’ve just returned home from Pop Warner Cheer Nationals, no trophy in hand, but an experience of a lifetime for the 18 girls and their families. This is only the second trip we’ve taken via air travel, as I was a nervous wreck, and keto consumed our lives for the better part of four years.

I am beyond grateful that Reagan was able to experience this with her peers; it is truly an something I never once thought she would have when she was diagnosed with epilepsy and cerebral palsy. At the same time, I am appalled and infuriated by the lack of accessibility during this trip.

While Reagan’s CP is mild, people with cerebral palsy use three to five times more energy to try and move than people without the condition. Over time, this leads to both generalized fatigue and exhaustion.

Sleep deprivation/fatigue is a seizure trigger for Reagan (and many others). Yet, it is also the cause of many cognitive and emotional stressors in individuals with epilepsy, including slowed thinking, reduced attention span, corroding memory, and lack of energy.

Early mornings, long days, and late nights, coupled with extensive walking and the stress of the final competition, felt like a recipe for disaster. While there was SO much good (and fun), it didn’t have to be so hard. It is essential to note Reagan and I spoke at length about much of this.

I did ALL the airline prep, contacting TSA CARES and ensuring Reagan’s profile outline her disabilities. Only to arrive at the airport to hear airline workers have never even heard of TSA CARES. While her disability is clearly listed, the airline could have cared less, expressing as much as they reluctantly allowed us preferred boarding.

I asked in advance for an accessible room in a quiet area of the hotel. Only to check in and wait 9 hours to receive an inaccessible room, while others who don’t need accommodation receive ADA rooms.

I also asked for a suite, knowing I couldn’t join fellow coaches and parents in the evening at the bar for adult time. Not only would extra space allow Reagan to get around more quickly, but it would also allow me to close the door to a bedroom and invite parents and coaches to our room while maintaining a safe distance in the case of a seizure. I didn’t get the suite, so I sat alone outside our room, wallowing in the sorrows of our squad’s loss and wishing to feel like a normal parent. Until a friend came and sat on the cold hard concrete with me, cocktail in hand (note this isn’t about the cocktail, it’s about the normalcy).

Additionally, I sat in the dark of our hotel room in the middle of the day. At the same time, Reagan tried to nap to prepare for the competition, wishing I could be soaking up Vitamin D at the pool, knowing I would never leave my kid unattended because of seizures and epilepsy.

We didn’t move rooms after finally being told one was available. Though a second-floor walk up, the current room was next to and around the corner from Reagan’s friends and their parents, the only two people outside of me trained in seizure first aid. The comfort of knowing this trumped all (especially when you are the solo parent on the trip), and Reagan said no to moving rooms.

We received the late performance and award times, and panic set in, knowing it would push Reagan to her max. The noise and lights overwhelmed her to the point of her having a panic attack, which felt like the beginning of a seizure. Instead of watching others in our category compete, we found the quietest part of the convention center to sit. I assured her she would be okay, even though I was just as scared as she was that she wouldn’t.

Reagan struggled, yet knew her limits, asked to go to bed while her friends stayed up, and faced SO many fears. She hid her embarrassment from her friends after being constantly told she didn’t seem like herself and laughed at when she mixed up people and things. How do you explain to 11 and 12-year-olds that fatigue and anti-epileptic meds contribute to severe brain fog? On countless occasions during the week, Reagan thanked me for believing in her, making her feel safe, and giving her this opportunity. I know it’s all worth it, but it shouldn’t be so hard.

Please learn about the Americans with Disabilities Act – ADA (authored by a person with epilepsy), a CIVIL RIGHTS law that prohibits discrimination against people with disabilities in all areas of life, school, work, travel, etc…

American Airlines, educate your staff on both disability and TSA CARES. This service provides accommodations for people with disabilities when traveling via air travel, and read the profiles of your passengers with disabilities. Reagan uses AFOs (ankle foot orthotics), a mobility aide, that are cumbersome and time-consuming to get on and off.

Hilton, specifically Doubletree SeaWorld, accessible isn’t just about the room; it’s about where the room is. A second-floor walk up nowhere near the lobby isn’t for a kid with cerebral palsy. Not to mention, she couldn’t open the bathroom door. Alberto, the manager, did everything to try to rectify the situation. While appreciated, it was too late.

Pop Warner, I want to be mad because I cannot be refunded money for my hotel due to booking procedures. But I hope my kid, who performed on a National stage, is paving the way for other kids like her. Inclusion is invaluable to not only my daughter but also her teammates.

The world we live in is not accessible for those with disabilities. Every day, I fight for Reagan to have the same opportunities as other kids. I have been fortunate to find many who will fight with me, especially on this trip. But it’s an uphill battle. I am exhausted, defeated, and sad. This is an opportunity to educate others about what life, specifically traveling in this context, looks like for Reagan and me as her Mom, Coach, and Caregiver. Despite it all, Reagan and I had an experience of a lifetime, one we will not soon forget.

It’s time…

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“At this point, we are worried about disordered eating in the future.” The words reverberated through my mind as tears welled in my eyes and my stomach sank. “It’s time to stop the ketogenic diet; she likely got what she needed from it in the first two years.“

Almost four solid years, three of which included food scales, heavy cream, and practically every food made from scratch. The final year was less stringent but still under the umbrella of the medical ketogenic diet. The time had come to let it all go. Control, good vs. bad food associations, and anxiety had taken over. The ketogenic diet was necessary; we needed seizure control and our kid back. It was easy, mapped out gram by the gram, and a seven-year-old who desperately wanted to stop taking Depakote. As the years passed, ease fell into second nature for me, the person administering and preparing the diet. But with age comes awareness, constantly comparing herself to peers not chained to meal times, grams, and healthy fats. It became all-consuming and often debilitating.

“At this point, we are worried about disordered eating in the future”. Those words hit me so hard because I lived it. Now my child was at risk of developing something I consciously chose not to return to. It was the “something” that was all-consuming and debilitating. The choices I made also revolved around good vs. bad, ie this is “good” it has enough calories to last me an entire day, this is “bad”, I will gain weight.. I thought I was so good at hiding it, still eating intentionally in front of people. I thought no one saw it. They saw it, those closest to me. My first boyfriend (a couple of times over) likely saved me by calling me out. Not allowing me to leave our friend’s college dorm room before eating something. That moment is engrained in my mind, though I’m not sure I ever thanked him; too angry at the time to see the care and concern, too focused on how I could control my eating and maintain a weight under 100 pounds. And though I know the warning signs, I did not see them in my own child, blinded by my need to control her epilepsy to see she her anxiety and constant worry stemed from her lack of control in the choices she could make surrounding foods.

I am thankful for all the ketogenic diet gave us, but it also took something from my child, who already faces a childhood outside of the “norm.” It took her freedom to eat and feel somewhat “normal” as a kid. I would go back and do it a hundred times over, I still firmly believe that the ketogenic diet should be a front-line treatment to those living with epilepsy, but I would change my mindset around diet. I wouldn’t use words like “special” or “magic”, or label foods “good” or “bad.” Instead, I would (and have in the past year or so) call it what it is, a medical diet to treat epilepsy. In addition, I would have spent more time talking to Reagan about those who also need other diets for medical reasons.

As I stood to leave the appointment, the NP hugged me, “I’ve been there too. And she’s going to be okay. You are going to be okay. You are doing a great job” Now, months removed from the initial weaning discussion, Reagan is okay. Although sadly, some of the clarity she gained from the ketogenic diet is gone, her anxiety has subsided, and she happily ate a piece of sourdough bread recently, though she did say she is not ready to have “regular” pizza, a hotdog or hamburger bun or ice cream. And I am okay-ish too; the past several months have been a time of reflection, recognizing that I never truly recovered from my own disordered view on eating and body image, but it’s time.

Victory

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Songs, smells, and foods take us back to particular days and times. It’s Unforgettable (Nat King Cole) or almost every song on the ’90s on 9 channel, ocean air, and black licorice for me. They invoke nostalgia, bringing a warm and fuzzy feeling, almost as if you are being embraced by a memory.

Yet, in epilepsy parenting, days, events, and special occasions often do the opposite. Invoking stress and trauma, almost as if you are there back in that moment, wishing away the memory of such an awful experience. Easter, Thanksgiving, Christmas, vacations, the first Monday of kindergarten…..the Eagles winning the Super Bowl.

As a lifelong Philadelphia Eagles fan, who lived in Beantown for several years, February 4, 2018, was a day I had long anticipated. I never wavered all the years I lived in Boston, or Title Town, as those who live there often call it. My love for Philadelphia sports, specifically the Eagles, remained steadfast. And though my little lady was born in the heart of Boston and spent the first few years of her life in Southie (South Boston), Reagan’s blood runs green. So we were pumped, jerseys on, green fingernails, and a school-made Eagles “hat”; it was our team’s time to shine.

Here’s the thing about epilepsy, it doesn’t care. It doesn’t care that it’s Easter, Thanksgiving, Christmas, vacation, kindergarten, or that your team finally made it to the biggest game of the year. It just doesn’t care. Those days, associated with joy and celebration, carry a different meaning for me now; they are tainted. That day, February 4, 2018, started with much anticipation, the Eagles fight song on repeat, and ended with a little girl sidelined while I sat alone watching my Birds do their thing. I often think of that day, the complexity of my emotions mixed with one of the greatest joys, sadness, and anger. I wanted to be out running up and down my street, I wanted to be screaming at the top of my lungs, but it just didn’t feel right.

Here’s the other thing about epilepsy, when you are young, you don’t remember that these special days were taken from you. So on that day and all those special days, I, as the parent, was the one who felt cheated. I remember those days they live with me. But with age comes awareness and starting to associate days with the good and the bad. Thanksgiving, car rides home from the grandparents, loud Christmas music, Friday night movies, gym class, they’ve all been tainted now and live in me and in Reagan too. With most of these, you get a do-over, a chance to change the core memory from blue to yellow. But with these once-in-lifetime things, there is not typically a do-over. Though it seems odd, the Eagles returning to the Super Bowl feels like we get a do-over. A chance to celebrate, a chance to say, “Remember when the Eagles won the Super Bowl?!” without the caveat of but you were sidelined (by epilepsy).

So give me a V, dot the I, curl the C – T – O – R – Y, VICTORY, VICTORY! Give me, give Reagan, the day, the day for normalcy and celebration, for victory. We want this for you, for us, every Philly fan, and those who know what it feels like to be sidelined. Go Birds!

My thoughts and original post from February 5, 2018:

Resilience, it’s what true champions and warriors are made of. When faced with a challenge, you stand up and fight, even after being knocked down time and time again. The Philadelphia Eagles proved this to be true, but so has this little girl. Though she was born in enemy territory her blood runs green. For the past few weeks, Reagan has been signing the Eagles’ fight song daily. Jersey on, green fingernails, and anxious for the big game, accompanied by playtime with friends, and boom. She was sidelined yet again. Seizures strike out of nowhere, taking her from anticipated moments and huge events. While she was able to watch one touchdown drive her little body was weak and needed to recover. Today, she is back in the game and the smile on her face was priceless when she heard her team won. Resilience isn’t taught, it is in you. You, kid of mine are as tough as they come.

***Just this morning Reagan asked how much it would cost to go to the Super Bowl, keep your dreams big kiddo!***

Grief, what should have been and what never will be.

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Grief, we typically equate it to the loss of a person. Grief that is the loss of what was or should be is like a wave you see coming but can’t avoid. It knocks you down with one fell swoop, dragging you out to sea, you are left fighting your way back to shore, yet finding nothing looks quite as you thought it did once get there. I know that grief all too well, it’s the wave that is called your child’s diagnosis.

We, parents of children who live with disabilities or medical complexities, are often sent out to sea in one quick fell swoop, our head’s bobbing, gasping for air. We find the will to swim, often alone, until the rescue boat that is other medically complex parents pulls you aboard, landing on an opposite shore.

You see grief in medically complex parenting comes in waves, you learn to brace for impact, there are times you are pulled out to sea and there are times your feet dig so far in the sand that nothing can bring you down. But it’s the waves of childhood milestones that hit the hardest.

Middle School. I knew it would hit hard, nonetheless I wasn’t quite prepared. It’s THAT wave, the one that came in gently but it knocked me down, I was sent out to sea once again. This time head bobbing, smiling though screaming, too far out for anyone to hear the cries for help. As I’ve listened to other parents whose children have also entered new stages I’m reminded of the nevers, the most likely nots and the harsh reality of epilepsy.

You are battling your way through the nuances of adolescent parenting. I’m grieving not getting to experience those normalcies.

You are worried that the ice cream shop moved making the walk there not as safe, I’m wishing that my kid could just walk there at all with friends.

You are letting go, allowing your kid to go out to lunch sans parents. I’m wishing I didn’t have to be there all the time, giving my kid freedom and independence.

You snuck away for a quick dinner out with your spouse, your kid is now at the age they can be alone for a few hours. My kid will NEVER get to be alone.

Friday night football games, middle school dances, clubs or organized activities sans Mom…the list of nevers and most likely nots goes on and on.

Every new phase of life I’m faced with a new different wave of grief. I’m reminded that my child who lives with a disability doesn’t get “normal”, therefore as a parent neither do I and sometimes I feel robbed. Robbed because I know “normal”, I lived it, but she likely never will. Robbed because “normal” parenting to me includes administering daily medications, tracking seizures, scheduling appointments with a lengthy list of doctors and specialists, making sure an IEP is being followed and trying to find camps and activities that don’t shy away the minute they hear the word epilepsy.

As the waves of grief roll in, I am reminded, I swam to shore before. The grief though, it’s not left out there, it comes back with you, it stays with you, it lives in you. You learn that normal is subjective and though others aren’t navigating the same treacherous waters as you are, they are navigating. Those parents on the boat that picked you up along the way, those are the ones who will hear your silent screams, they too know the same grief of what should have been and what never will be.

*Disclaimer – Grief, is incredibly personal. I do not know the grief that comes with a loss of a child that so many in my epilepsy community do. I do however admire and keep them in my heart.

Secondly, this is not to say adolescent parenting isn’t HARD, I am watching those around me battle through. Often when I share these types of posts they are met with “the grass is always greener”, I can assure you the grass on this side isn’t the place you would rather be.*

Seasons of Change

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Seasons change. Every four months we anticipate the renewal of spring, the warmth of summer, the crispness of fall and the cold, cozy days of winter. The shifts come and we embrace them.

Yet, when the seasons of our lives shift, it’s often met with anxiety and trepidation. In one short week a shift will happen in our home. From little girl in elementary school to tween in middle school. There is much anxiety around this shift. The soon-to-be middle schooler has no desire to leave the bubble of elementary school, does not want new teachers or therapists and is beyond nervous to meet new kids. Yet, I don’t see a little girl anymore, she’s taller, more independent and often times full of sass. The Mom of said soon-to-be middle schooler is anticipating a lot of time spent educating a new group of educators on what epilepsy, cerebral palsy and disability looks like for my child. Yet, this isn’t my first rodeo, I am comfortable in my skin as an advocate.

The season of my own life, or should I say decade, changed a mere two months prior to the pandemic. I met 40 with fear and quite honestly regret. The decade prior brought motherhood that threw me for a loop. I became a mother, a caregiver, an expert on my child’s medical and educational needs, an advocate, and threw myself into volunteering for everything possible related to Reagan, mainly so she could participate with her peers. All things I’m incredibly proud of, yet none of those things were solely for me. While I would never go back and change putting my medically complex child’s needs first, I would have advocated better for myself, asked for more help and found a way to not lose focus on my own hopes and dreams.

I’ve shifted my mindset recently. I’ve made the conscious choice that not every decision will be made solely for Reagan but also with my own interests and sanity in mind. All while knowing I’ll never be the “put your own oxygen mask first Mom” and accepting it none the less.

We are both a bit in denial, trying to get a grasp on the changes ahead. I hope to walk hand in hand with my tween (while she’ll still hold my hand) into this next season with grace and understanding that all the seasons before prepared us for this one. Seasons of change are inevitable, true shifts happen when we embrace them.

*To all the early-to-mid-to-late-fourties’ Mamas going through the tween and teen years with your kids, while reclaiming and owning your own life’s path and purpose, I see you and walk with you into this season. Also, who thought this was a good idea?! #allthehormones*

Self Care and the Caregiver

April 16, 2021April 16, 2021 ~ erinmonast ~ Leave a comment

Self care it’s the hot topic these days. I’m constantly hearing things like take time for yourself, put your own oxygen mask on first or you need to be the best version of yourself for your child. Moms, we are the last ones to put ourselves first, I saw this first hand growing up with a single Mom, raising three girls. Add a child or children living with complex medical and educational needs, your title soon expands from Mom to nurse, teacher, advocate and caregiver and your own needs fall even further down the list.

As a trained yoga instructor, I know the importance of self care, in fact yoga helped me cope with Reagan’s diagnosis early on. It’s the application of self care that is a true challenge.

When I started this post in January of 2020, Reagan was in a place of stability for the very first time. A place where we were not at the pediatricians office every other week. A place where the school nurse wasn’t calling me multiple times a week. A place where medications weren’t being changed every few months. A place where we didn’t live in a constant state of panic. While much of that holds true still, we aren’t in that same space of seizure freedom. The pandemic added the stress of virtual schooling, loss of services and keeping Reagan healthy.

Leading up to 2020 we pushed, we added on, we doubled up. We did all the stuff. It paid off, Reagan benefited in ways I couldn’t even dream of. In doing all this, I realized the person who fell behind was me.

My two to three days of yoga slowly started to phase out making way for more therapies, appointments and even cheerleading. The once a week yoga class I taught was replaced by swim lessons, since every other night was already booked. My weight fluctuated as I let pizza and chicken cheesesteaks sneak back in because I was too tired to make healthy meals after hours of Keto prep. My hair speckled with grays and lines have creased my forehead. My body and mind are fatigued, the emotion that lies behind all the “stuff” is draining and all consuming.

You see self care is easier said than done, especially when there are complexities to your life that take precedent.

I didn’t take the best care of myself , I didn’t do all the things I wanted to do before I turned 40, I didn’t do anything for me. And I was more than okay with it because Reagan was thriving (and even with break through seizures, still is). I was okay until I wasn’t.

In the past six months I’ve found myself in the emergency room twice and at more doctors appointments than I can count. The general diagnosis was this….”you have stress and anxiety and need to dedicate time to yourself”. Now, there are a few really fun (sense the sarcasm) underlying female things going on as well (hello perimenopause at 41), some that require every six month checkups but at the core was stress and anxiety. I think any “special needs”, medically complex parent can relate.

This isn’t “oh a pandemic happened”, this has been going on for years and it finally came to a head. Looking back I never asked for help, I just kept plowing through. Travis and I haven’t been away just the two of us for even an over night in well over three years, maybe more and I can count the amount of date nights on one hand. I didn’t ask for help out of fear. Fear of not being there for Reagan. Fear someone else wouldn’t be able to handle all the stuff. Fear a seizure would happen and I wouldn’t be there. Fear a seizure would happen and whomever was with her would experience the same trauma I did after witnessing her first seizure.

I also didn’t ask for help because I didn’t realize I needed it. Sometimes help comes in the form of letting go of what doesn’t serve you. I’ve let go of a job that caused undue stress, I’m learning to say no, I’m learning to see things as they are and not as they should be. I’m learning that self care doesn’t just happen on Sundays in the form of a bubble bath and face mask. Self care is doing the things that make you, feel more like you.

This post isn’t for pity, it is a cautionary tale for those living in this world. In the midst of doctors appointments, specialists, new diagnosis’s, therapies, IEP meetings, etc., make space for yourself, for your spouse, for the person you were before this crazy ride.

This post sat dormant for well over year, a year that I lost, don’t lose the year, don’t lose yourself.

A little bit of change, a lot of hope

March 3, 2021March 3, 2021 ~ erinmonast ~ Leave a comment

It’s been few years since I started this blog and almost eight years since Reagan was diagnosed with both Epilepsy and Cerebral Palsy, our lives have evolved and it’s time for this space to as well. Aptly titled, This is Epilepsy, as this is seemed to be the “it” phrase at the time, I wanted a place to show was Epilepsy really is, because it most certainly is not just seizures. Reagan’s (and our family’s) life is not all about Epilepsy, even though it is pretty all consuming. The past year brought so much perspective as to what is important and what is not. The yoga teacher in me is letting go of anything that does not serve me. Thus, change, albeit just a little.

So what’s changing… well you probably already noticed… the name! I was looking for a catchy team name for tee-shirts for awareness events, we’ve been at this for awhile now so it was time. I crowd sourced (my family), and my brother-in-law came up with Rea (pronounced Ray) of Hope. My talented friend, also an Epilepsy Mom quickly threw together a logo for me and it all fell together.

INCLUSION. Having a child with a disability gives you a view of the world you otherwise wouldn’t have. It opens yours eyes, your heart and allows you to see people for who they truly are…people. Yet, even today in 2021 the world is not accepting of those with differences. Let’s change that, NOW!

Advocacy and awareness. There are more than twice as many people with epilepsy in the U.S. as the number of people with cerebral palsy (500,000), muscular dystrophy (250,000), multiple sclerosis (350,000), and cystic fibrosis (30,000) COMBINED. Yet, research for a cure is extremely underfunded. So we will walk, run, hold a lemonade stand, paint pumpkins, shout from the roof tops…you name it to raise money to find a cure!

Yoga for every body. Yoga brought me through the dark, lonely, often scary times early in Reagan’s diagnosis. It’s what I go back to for grounding, but it also has been place for Reagan and I to connect. Through Reagan I’ve seen that yoga is for all abilities, every body moves differently yet can find the same peace and centering through incorporating breath and movement.

Cooking with my Keto kid. My greatest fear in putting Reagan on the medical ketogenic diet was taking away one of her passions, cooking and baking. Instead, SHE embraced it, acknowledging what she cannot eat and finding ways to keep her passion alive. She watches Top Chef, Beat Bobby Flay and many other cooking shows, reads cookbooks, creates cakes out of play dough and constantly asks me to create new meals based on her ratios.

Both Reagan and I have some other fun things in the works, but you’ll have to wait in those. Plus, we’ve got tee-shirts! And hope, lots and lots of hope.