The Space In Between

~ 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

~ 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

~ 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.

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.

Perspective

~ erinmonast ~ Leave a comment

The past two months have been quite an adventure for our family. You name it, it happened. Everything from a water damaged basement (x2), to a broken oven, to a broken hot water heater, to several ER visits, to muscle spasms, and the very first broken bone. It’s been a real doozy!

On top of that Reagan’s seizures have been a little more frequent requiring some medication tweaks and we learned, after a very long day of appointments with the CP Clinic, she may need surgery in the next few months.

I’m not going to lie, it’s been stressful! But parenting a medically complex kid has given me perspective (not to mention purpose) on what is truly important in life. Was I pretty annoyed we had to re-do our finished basement twice, absolutely! But, fortunately it’s fixable. Same goes for the oven and the hot water heater, without those I felt inconvenienced, but was it going to take up the space I needed to focus on other more important things, no. Even that broken bone, while certainly unexpected, a quick surgery, full arm cast and a story to tell later, Reagan is on the mend.

You see as a parent of a medically complex kid, you hear worse, you see worse, you know worse. We lived worse a few short years ago when Reagan’s Epilepsy spiraled out of control. Of all these things that have happened in these past few months, truly all I care about is how we get Reagan’s seizures back under control and the steps we need to take to prevent an extensive surgery.

This year I think most of us have felt inconvenienced and maybe even slightly annoyed. As we move into, November, a month known for giving thanks, may we all take a moment to reflect on what’s truly important and what we are thankful for.

I am thankful that all those unfortunate events were fixable! I’m thankful for parenting a medically complex kid, that is resilient, strong and positive, who reminds me daily to smile and laugh even when things are stressful and overwhelming. I’m thankful for family and friends, who have supported us not just now but through the years. I’m even thankful for that broken bone, because for a moment I wasn’t a medically complex parent, I was just a Mom who’s kid broke her arm.

When it all falls down

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I’ve started and stopped a post about what our life in quarantine over the past six weeks has been like, which until Wednesday had been going rather well, all things considered.  Then it all fell down, not the past six weeks but the past nineteen months.

Yesterday I watched an Epilepsy webcast featuring a local Mom whose child lives with a rare form of Epilepsy hosted by a Mom who lost her child after battling Epilepsy for nearly four years I felt an immense sense of guilt, our life has been hard, but not to the extent of some of things both of these women and their families have faced.  I also felt grateful for the past nineteen months of seizure freedom, no idea that later it would be taken away.

As a parent of child with Epilepsy, you know a seizure could happen at any given moment, but you hope and pray that it won’t, only it does and it did.  It was a hard fought battle to get those nineteen months. It took trial and error of many anti-epileptic drugs over many years, the Ketogenic Diet and perseverance.  Prior to this Reagan had never in her eight years of  life been nineteen months seizure free. We had a few honeymoon periods over the years but they  ended as quickly as they began. Her  documented seizures started when she was just sixteen months old (she was likely having them for months prior).  She wasn’t ever having seizures daily, she’s not diagnosed with a rare form of Epilepsy, she is not on a G-tube, she is able to walk and talk and attend a typical elementary school, but she will never outgrow Epilepsy or Cerebral Palsy for that matter (this is a fact, so please don’t come back at me and say have faith, you never know, I know, the doctors know, that’s it).

It sucks. It sucks to have a child living with two medical diagnoses both of which have no cure and not one in sight. Its sucks that yesterday was day one and we start all over again.  It sucks that she knew the seizure was coming and to watch her aura of terror before the full blown seizure ensued.  It sucks that my first thought was what if we need to get her to a hospital, nowhere is safe.  It all sucks, no matter the circumstances of the diagnosis, Epilepsy is a beast. The taker of time, turning moments once filled with childhood joy into fear, anger and frustration.

Reagan is resilient, she always has been.   She is  still tired but enjoying spending the day in pajamas (I mean isn’t everyone these days), coloring, watching movies, doing a little school work and receiving well wishes from her classmates.  Last night I fixed myself a drink, celebrated the past nineteen months but cursed and cried a bit too. It all fell down, it has before and it may again. We are still standing, hoping we wake up tomorrow to day three.

The Door Opened

~ erinmonast ~ 2 Comments

Over the past few weeks I’ve watched as Reagan has run to the car after school, pulling the door open, throwing her backpack and lunchbox in, then jumping in her seat proclaiming she had a great day.  Almost every single day I hold back tears, I’m of course excited that she had a great day at school but it’s the independence of getting herself in and out of the car that has me welling up. It’s a normal act for most families, but it wasn’t for us until recently.

As I reflect on 2019, I see a lot of what is considered normal in our lives, for the very first time.  I feel an immense amount of gratitude and pride and over all appreciation for the small things. I know we didn’t get here by chance, I know that we (mainly Reagan) worked hard and put in the time and effort for this payoff. I credit her commitment to the Ketogenic diet for the positive changes in her cognition, overall mood and seizure control.  I commend her for not fighting me on going to summer school, attending intense therapy sessions and having a tutor for nine straight weeks. I am in awe of this person who is  my child, and my hero.

I’ve watched as she has rejoiced in the normal activities that most children have been taking part in for years.  She found a love in cheerleading, so much so she keeps asking when it starts back up.  And I found driving to and from cheer practice and games is much less stressful than driving to and from therapies and doctors appointments.  She found her voice, quite literally, learning how to sing on time with the words to the song. And I’ve found that even if we have to listen to the same song over and over, it has helped her belt it out.  She found her strength, by jumping off the side into the deep end and back to the wall again. And I found, that no matter how many times I watch the video of said jump, I’ll still cry. She has found her independence, not just by opening the car door (with special thanks to a teacher at school who gave her the push), but by attending a play-date on her own and even suggesting she can walk down the street to the neighbors without me.  And I’ve learned letting go is so hard, but also so necessary. She found a confidence through getting to be a kid, not a kid defined by her challenges. And I’ve learned that through challenges, we can rise up and be the best version of ourselves.

2019 will forever be ingrained in me as a year marked with change, positivity and normalcy.  It will be the year Reagan opened the door to all the wonderful things yet to come.

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Ability over Disability

~ erinmonast

I don’t often talk about Reagan’s Cerebral Palsy, because her Epilepsy has been the medical condition with the most amount of need. But that’s doesn’t mean it’s not there, it’s been there all along (even before Epilepsy) and in my mom gut I knew it even before she was officially diagnosed.

When Reagan was just seven months old I noticed she wasn’t meeting her gross motor milestones. As any concerned first time mom would do I took her straight to the pediatrician, who told me to wait to panic as it was still early but he would refer me to a pediatric physical therapist just to get a second opinion. She started physical therapy the next week and has been attending weekly sessions ever since.

Months later after getting MRI results, I again did what every first time mom does and took to the internet. Based on her results, Reagan had Cerebral Palsy. A week later when I asked the neurologist if she did infact have CP and the answer was no. So we forged on, continuing physical therapy weekly, with a developmental delay diagnosis.

It wasn’t until we moved and changed neurologists was my Mom gut-diagnosis confirmed on a piece of paper. Reading through the after visit summary report I saw it, diplegic Cerebral Palsy. Immediately I called the neurologist and asked what this meant for Reagan. “She mostly likely won’t be a ballerina but she’ll live a very full life”. All I heard was she won’t be a ballerina and my heart sunk. The thing I loved so much as a kid my own daughter wouldn’t be able to do. This diagnosis came about a month before Reagan turned two and weeks before she started waking independently.

In the years since that diagnosis I have watched Reagan dance around our living room, kick a ball, catch a ball, run, swim, trudge through snow and get into yoga poses that some may say are difficult. I have also watched her push through the fatigue and tight muscles and recognize when her body needs a break. She has never let her disability get in the way of her ability.

Yesterday I watched as she participated in her first ever cheerleading competition. I watched as she ran onto to the floor, got down on one knee and up again, as she slid into the front on her belly and then returned to her spot. These things are hard for her, they take a lot of motor planning that we as able bodied individuals take for granted. We often don’t recognize what a gift it is to just take a walk.

Today is World Cerebral Palsy, take a walk, move your body, appreciate the ability that you have. Focus on what you can do, not your perceived notion of what you can’t.

And that neurologist she was right, Reagan does lead a very full life, one step at a time.

** Who knew cheer shoes and AFOs work so well together! ***

Many thanks to the Wayne Wildcats Cheer organization for providing an inclusive program.

Summertime Gladness

~ erinmonast ~ Leave a comment

Summers as a kid for me where filled with swimming at my grandparents pool with my cousins, running after the ice cream truck and staying up late catching fireflies. I look back and think how lucky I was to have such an incredible carefree 18+ plus summers, with people who are not just my family but I also consider my best friends.

This past weekend Reagan and I traveled to Connecticut to celebrate my Uncles 70th Birthday. It was reminiscent of my childhood, swimming, playing and staying up late for most of the little kids. It gave that warm fuzzy feeling until I looked around and my own child was missing out. She missed out on running through the yard playing games, because sometimes it’s hard to keep up and that can cause frustration and emotional breakdowns. She was missing out on the night swimming and snuggling up on the couch with cousins watching a movie because she tires easily from both her CP and her Epilepsy medications and was tucked into bed a mere 20 minutes after her standard bedtime. She was missing out on sitting and eating dinner with everyone because she has to stick to a strict meal schedule. She was missing out on cake because it’s not Keto. Many times throughout the night I wished she could just experience one night of my childhood summers.

I asked Reagan when we got home what her favorite part of the weekend was, she responded “spending time with my family”. It was only then did I realize she didn’t see the weekend as I did, she didn’t feel like she was missing out because she’s never known any different.

Reagan is pretty self aware she understands her limitations and what is just too much for her. She knew running around after a day of swimming and boating may be to physically draining for her so playing barbies it was. She knew staying up and singing happy birthday only to not get to eat the cake probably wouldn’t be fun, but having a sleepover in one room with her cousin, mom and aunt would be. She knew, but I didn’t. My head was clouded with what I wanted her childhood summers to look like and how they differed from my own.

Reagan has always had the ability to find beauty in the everyday or things we often take for granted. Things like running through the rain, feeling the wind on your face as you speed through a lake on a boat, or taking a morning walk with family.

Our childhoods are different because we are different people. But we both get to be apart of a big, crazy, fun, loud and loving family that accepts everyone just as they are.

A Block of Cheese

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I have this vivid memory of walking into my sister-in-law’s house years before Reagan was born.  She was watching a friend’s son after school.  He sat in front of the TV with a block of cheese and she set a timer for him to finish the food.  At the time I remember thinking it was odd, but now it makes complete sense to me.  That child was living with Epilepsy and treating it with the Ketogenic Diet.  Fast forward eight or so years and that child is seizure free and we are one month into our Ketogenic Diet journey. It’s odd how some memories really stick with you, or is it? Is it life showing you that this is something you need to remember for your future?

Reagan does not sit in front of the TV and eat a block of cheese, but she does sit in front of the kindle with a homemade Keto meal.  We do set a timer for 30 minutes and her meal must be completed within that time frame.  And since the portion sizes are so small, it’s never really an issue.

A month ago when we returned home from our 5 day hospital stay I was nervous and tired.  How would we do this?  What if I screw it up?  What if she grows to hate this? Today, we are doing it, we are making it work.  I have screwed up, I bought the wrong heavy cream and have thrown away entire batches of keto gummies and cloud bread (it’s like pumping and freezing breast milk to find your freezer stopped working).  Instead of growing to hate it, she has embraced it and has asked to help make the meals.

That little boy I remember so vividly from years ago, is now my little girl, living with Epilepsy and treating it with the Ketogenic Diet.