It’s time…

“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.

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*

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.

The Space In Between

May 26, 2021May 25, 2021 ~ erinmonast ~ Leave a comment

I parent from the space of in-between. In-between “special needs”, or as I like to say disability parenting and “typical child” parenting. Therefore, Reagan lives in the space in-between, never really fully fitting in one world or the other.

In many ways Reagan is a “typical” nine year old, attending public school, going to Girl Scouts, cheerleading and CCD. At home she enjoys reading, games, her IPad, cooking and hanging with family. We even reached the stage of slamming doors and spending way too much time making sure her hair looks just so. You know the “typical”stuff.

On the other hand Reagan lives with both Epilepsy and Cerebral Palsy, the not so “typical” stuff. And when I tell people this, I get one of two reactions. One of surprise, “Oh really, she doesn’t look like she has cerebral palsy, she walks and talks” (which by the way isn’t a compliment) or one of pity “Oh, I’m so sorry” (also not helpful). Only once did I get (from another “special needs” parent”) “Look at how wonderful she is doing, you should be proud”. There is no in-between, but that’s were we live. Since Reagan’s diagnoises are mild, she is not disabled enough nor is she typical enough. She doesn’t fit.

I see it in the lack of invites to birthday parties, play dates and even the neighborhood after school hang out. I see it when she was denied therapy services during the pandemic as her need wasn’t deemed critical (find yourself a therapist that fights to have that changed). I see it in conversations with other parents, I politely listen and take interest in hearing about their child’s after school activities but when the conversation turns to therapies Reagan attends, there is silence on the other end, not due to lack of care and concern, simply because they do not know what to say. I see it when I submit her for disability coloring books and she isn’t selected. I see it all the time, in all things, in all the places. The hard part is this…Reagan sees and feels it. The older she gets the the larger this space of in-between grows. I hate this gray, weird space and it shouldn’t exist.

Why is there this space of in-between? Why are there boxes to check and what happens when there isn’t one for you? Why is this world not accepting of people as they are?

In general people are uninformed or misinformed about what life with disability looks like. Disability is a natural and normal part of the human experience, it’s only when we view it as such that the space of in-between goes away. Why do I share Reagan’s life and story? To normalize disability, plain and simple. Yes, I do also share because we desperately need a cure for Epilepsy. But guess what, so do MILLIONS of other PEOPLE. Epilepsy is the 4th most common neurological condition and epilepsy affects more than 65 million people worldwide. Cerebral Palsy is the most common motor disability in childhood. Disability is common, with an estimated 1 in 4 adults living with some form of a motor, cognitive, hearing, vision, independent living or self care disability. Common, normal, typical….you get it.

So here’s how that space goes away:

Talk openly with your children about disability
Read to your children about disability, race and perceived differences
Encourage your school district to have a more inclusive approach
Ask those living with disability about their life
Use person first language
Ask parents of children with disabilities, how they can better include the child living with the disability
Open your heart and your mind

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.