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.

The Cost of Winning

Featured ~ erinmonast ~ 1 Comment

For the past several years, I have coached youth recreational cheerleading. What started as a way to ensure my child with epilepsy (and cerebral palsy) could participate has morphed into my renewed love for cheerleading and sharing it with my daughter, who I feared would never be able to dance or cheer.

Cheerleading is hard for Reagan due to her limited mobility, slow processing speed, and awareness of her abilities compared to her peers. Yet, she loves it. Coaching is hard. Coaching your child is hard. Coaching your child with disabilities among neurotypical peers is hard. Coaching fifth and sixth-grade girls as they all try to navigate life is hard.Yet, I love it.

We rarely get a front-row seat to how our kids interact with their peers during school or at practices. I have that seat as a coach and a Mom, and I will tell you it’s a fine line. You can’t favor your own kid, and you can’t favor your kid’s best friend on the squad, and for that, I unintentionally excluded my kid (and her friend(s)).

I have watched her struggle socially, emotionally, and physically. I’ve watched her sit on the outskirts, never fully being included. I’ve watched her try to make conversations only to be met with silence. I have witnessed her frustration and self-doubt turn into shutting down. I have listened to her say things like “What if I disappoint them?”, “I’m not as good as XYZ,” “This is too fast for me; I should just cheer them on.”

I have watched and listened but never spoke up for her because of that thin line between coach and Mom. In a sense, I was sidelining my own kid, my own kid who already struggles, my kid who deserves the same opportunities as her peers. I was actively contributing to the problem by not saying anything, putting her in the back, and not making parts of the routine more accessible.

My heart breaks for her while running through a laundry list of questions that echo her pain. Should I pull her? Is this fair to Reagan? Is this fair to the other girls? What if we lose? Will they blame her? What if I pull her, and we do win? Will the girls still view her as a part of the squad even though she didn’t compete? Should I, the parent of a neurodiverse, medically complex kid, be coaching neurotypical kids?

You become hyper-sensitive and innately aware of everything when your child is viewed as “different.” I have watched the divide grow greater over the years. She sits between neurotypical and neurodiverse, desperately wanting to fit in with her peers. You learn there is no place for your kid who sits in that place, as hard as you try to make a place for her. You learn the difference between sympathy and empathy. You learn the price of winning often comes with the cost of exclusion.

This coming Saturday, we will compete; I do not know if we will walk away with a trophy or advance to regionals. What I do know is that sometimes winning comes in the form of a lesson you need to learn all along.

It’s time…

Featured ~ erinmonast ~ Leave a comment

“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.

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.*