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

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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…

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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*

Bits and Pieces

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I recently went down a rabbit hole of looking through old photos for a project I’m working on. Pictures from my childhood, awkward teenage years and early twenties unearthed from dusty boxes.

I was reminded of the person I was before. Before marriage, before parenthood, before epilepsy. There was the girl who fought through an eating disorder, dreamed of a corner office in New York City and had likely said the word epilepsy once in her life. Our lives don’t always turn out as we had planned. That girl moved to Boston, a far superior city to New York in my opinion and stumbled through start-up after start-up, never quite landing a “career”. Soul searching lead to an almost return to school to become a special education teacher (how about that for foreshadowing). Almost, because life had different plans just nine short months later.

I’m not the only parent to a child with disabilities that has put their own hopes and dreams on hold to ensure their child gets all they need. But at what point do we pull bits and pieces of who we were before into the after? At what point do we say I need a little bit of that girl with me today? Certainly I would leave behind the insecurities, the RBF (‘Spina Stare – if you know, you know) and the clothes. But that girl with collagen filled cheeks, not a gray or worry in sight was full of hopes and dreams, some have evolved and changed or even faded away, but all have taken a back burner to care for my child.

The other set of pictures I wound my way through were of my own child, who is about to enter that awkward phase. Will she go to a dance? Will she be on the high school cheer squad? Will she sing in choir? Will she get her heart broken by her first love? As she comes into her own, i know her experiences will differ from mine, largely in part to us being very different people but also because of the challenges thrown her way. As she navigates this next journey I hope she follows her heart while realizing her dreams. If at some point they take a back burner , I hope that she returns to them. Bringing bits and pieces with her into each new chapter of her life, remaining true to herself.

Unearthed photos lead to the realization that while my primary role is a parent caregiver, there are bits and pieces of the girl from before that still wants to be here.

A lifetime of lessons in 10 years

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Somehow I now have a ten year old. It’s hard to wrap my head around. This post started many months ago as the 10 Lessons I’ve learned in 10 years of parenting a child with disabilities, but I kept getting stumped or going off on a tangent. Parenting looks nothing like I had envisioned it, instead of ballet recitals, soccer practice and sleepovers it’s therapy appointments, bloodwork and way too many seizures. But it’s taught me a lot!

I’ve learned, I’m not the person I used be, the new person I am is who I was always meant to be. I’ve learned that with the title Mom also comes, advocate, nurse, teacher, chef, and protector. I’ve learned kids, all kids, are far more resilient and adaptable than adults, they go blindly into the unknown without fear or hesitation. I’ve learned epilepsy is a beast that doesn’t discriminate, taking from the young, old and everyone in between. I’ve learned a good therapist (speech, OT, PT) and teacher will not only change your child’s life but yours as well. I’ve learned comparison is the thief of joy, only compare your kid to themselves. I’ve learned that people are mean, not accepting of those that fit outside of the social norms, and girls are the worst. I’ve learned ableism exists, having experienced it (as a parent), I can attest it is nasty, antiquated and time for change. I’ve learned inclusion is a mindset but it is also a right, change your mind and everything will be right. I’ve learned there are people who will open their hearts, arms, minds, resources and homes on a moments notice. I’ve learned no one and I mean no one will advocate for their child like a mother, except for another mother to child with disabilities. I’ve learned empathy is a learned skill, study up. I’ve learned there aren’t enough boxes to check and I don’t want my child to fit in one anyway. I’ve learned life throws punches, you can bob and weave, but still get knocked down, dust yourself off, get back up and fight. I’ve learned grief and gratitude can coexist. I’ve learned sharing your story is cathartic but also allows others to heal. I’ve learned I don’t need a medical degree to know what the right plan of care for my child is. I’ve learned disability does not mean inability. I’ve learned that the path my child will take is different than my own and that’s what makes it all the more beautiful. I’ve learned my 10 year old is far braver than I will ever be. I’ve learned sometimes the answer is to put the windows down, turn on your favorite song and sing at the top of your lungs (thank you Reagan, and Journey).

I’ve learned, I’ve grown, I’ve evolved, I’ve redefined my definition of success. Most importantly I’ve found joy in motherhood. A path I never thought I wanted to take turned into the journey I needed. I am softer, yet stronger, more outspoken yet not as brash. More empathetic, yet I don’t have time for any of your bs. Motherhood over the past ten years has taught me a lifetime of lessons. I’m thankful for each and every one of them, but most of all for the kid that made it all possible.

Vacation All I Ever Wanted….

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I want more late summer nights catching fireflies, playing flashlight tag and sitting by the fire. But it’s too risky, too much at stake. Sleep takes precedent.

I want real summer camp, running free with friends, getting messy and sweaty, collapsing on the couch at days end. But the heat, oh the heat and the chance that skills gained could be skills lost. Extended school year takes precedent.

I want a vacation filled with breakfast at Uncle Bills, ice cream at Springers, boardwalk fries and lemonade. But the Ketogenic Diet reins supreme.

I want to hop a flight to a far away destination, without worrying where the closest hospital is. But, Epilepsy.

Epilepsy doesn’t take a vacation even when you do. It doesn’t care that your nine year old just needs to be a kid. It’s there all the time. It’s there on vacation when you are applying sunscreen to go to the pool and bam a seizure. It’s there when you just want to grab a quick bite to eat, but you are confined to the scale, grams and fasting times. It’s there on hot days when you don’t dare leave the house without a cooling towel and tons of water. Epilepsy it’s there all the time, on vacation, summer days and nights, dictating your every move.

Each summer I go through this mix of emotions of what I want for Reagan and what she can both handle and what’s right for her. Maybe it’s that summer is my favorite, the things I want for her are what my childhood summers where filled with. Maybe it’s hearing other parents signing up kids for camps, eating ice cream for lunch or not worrying about a 90 degree day. Maybe it’s I’m a bit angry that she’s had two seizures (her seizures are long and ALWAYS require emergency meds) in the past three weeks, which is outside of her normal. Maybe, just maybe I want a break from all things Epilepsy.

For the past almost nine years every decision I’ve made revolves around Epilepsy. It’s draining, exhausting and frustrating. I want carefree normalcy, yet Epilepsy just will not allow it. I want a vacation from Epilepsy…and it wouldn’t hurt if it was on a tropical island Pina Colada in my hand, Reagan running free through the waves not a care in the world.

Just Breathe

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I remember the day so vividly, not the date or the year, just the day. I hadn’t been practicing yoga that long and wasn’t really into all the quotes and mediation stuff, I was simply trying to take back a bit of myself after the first few years of motherhood. The teacher started the class by saying, “Our minds don’t let go of trauma until our bodies do, take a deep breath and let it all go”. It was in that moment that I realized I had been carrying the trauma from Reagan’s early and scary birth with me. I had been carrying the guilt of her diagnoses, because she lost oxygen during some point of my pregnancy. I had been silently grieving motherhood knowing it would never be what I had envisioned. I never viewed this as trauma, until that moment and knew it was time to let them go.

For the first few years of Reagan’s life I swore off any type of physical activity, I felt guilty that my body was so easily able to do things and hers was not. If she couldn’t do these these things than I shouldn’t either. As she started to walk around two years of age, I slowly gave myself permission to get back out there. I started practicing more and the opportunity came about to attend a 200 hour teacher training with my sister (who was already teaching and running a studio). I thought sure, but I will never ever teach a class, this will just be a great opportunity to learn more. I spent a few months diving into poses, breathing techniques and learning about myself and fellow teacher trainers.

Over the years I have had to step away from my practice, first when I had a surgery that was necessary but solidified our family would remain just the three of us. And a year later another surgery which proved to be my saving grace, sparing me from something much more serious. During one of the surgeries I remember asking if I could have a moment to breathe, you know those really deep calming belly breaths?! I vaguely remember the anesthesiologist saying he felt calm just watching me. I found my way back to my mat eventually after recoveries that were most likely easier due to my yoga practice.

Most recently, last year I stepped away from my practice because Reagan needed me more. With age, her academic and physical demands are greater leading to more therapies and doctors appointments. And when she started the ketogenic diet, there was absolutely no room for error. Though a challenge for me personally it was the right decision, as Reagan thrived and made the most gains she has in years. This year with all the craziness of the pandemic, I have finally found myself back on my mat a lot more, often times with a partner in tow.

The physical practice of yoga lead me to a mental practice of learning when to let go, to breathe through discomfort and the importance of finding one thing that you can turn to. And while I swore I would never teach a single class, I did, and not just one, more than I can count (though I did take a break from teaching at the same I stepped away from my practice last year). The most beautiful part of my practice has been sharing it with Reagan. All those years I worried about what she wouldn’t be able to do, I never thought about what she could. Through Reagan I have learned that truly yoga is for every body. There is beauty in the ability to find stillness, grounding and peace.

What No One Told Me…

February 11, 2022 ~ erinmonast ~ 2 Comments

I recently shared a clip for a documentary, called UNseen. And let me tell you I’ve never felt so seen in my life (as a parent). Before I had Reagan, a friend gave me every labor scenario, I felt prepared. Until I wasn’t. I imagined a life filled with dance class, soccer practice, cute little girl shoes, and drop off playdates. That is not and never has been my life.

No one told me I would look in the mirror and not recognize the person staring back at me.

No one told me I would give up my dreams of truly ever having a real career.

No one told me that I would become an advocate, a nurse, an insurance guru, an OT, a PT, a ST, a chauffeur, and a medical diet chef.

No one told me that in one year my child would have 70 various medical appointments.

No one told me I would have to pin my kid down for medical procedures while telling her its okay meanwhile silently crying inside.

No one told me that the stress of parenting would put my own health in jeopardy.

No one told me that date nights and trips with my spouse would disappear.

No one told me that exhaustion to your core does exist, yet you persist.

No one told me to smile, say I’m okay and move on with the conversation, but I learned that’s what you do.

No one told me to never talk about the realities of caregiver parenting, yet no one ever does.

Why? Why don’t we talk about it? Why don’t we call it like it is? Exhausting, both mentally and physically, filled with grief for the life we thought we would have and lonely, so very lonely.

Mental health has been talked about more in the past two years than ever before. Yes, the pandemic has been hard on so many people but there is a subset of people, parent caregivers who have been battling alone for years on end. These people that have gone to their car and screamed after another disappointing appointment, have cried in their showers, have let their own needs and wants fade away, these people who may never become empty nesters. Do you know these people? Yes? Help them without asking what they need. Listen when they talk, without pity or judgement. Are you one of them? Ask for help and don’t feel bad about it. Put yourself first, because you are the lifeline for your child. You are the one keeping it all together while falling apart behind the scenes. You are still you, just with a sprinkle of trauma and a life slightly outside of the “norm”.

*I am firm believer in therapy and yoga, both of which helped and continues to help me through caregiver parenting*