The Door Opened

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 her 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 cheer leading, 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

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

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

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.

Epilepsy Awareness Day

I haven’t posted in awhile because well, life.  Since today is Epilepsy Awareness Day, it seemed fitting, but to be quite honest every single day is Epilepsy Awareness Day in our house.  I am sure there are many people who see me posting these very personal parts of parenting a child with Epilepsy and think “wow, she’s sharing a lot” and I will be the first to tell you that prior to having a kid with multiple disabilities I thought the same of over-sharers.

Then boom, your child has a seizure and you feel alone in this space that you never imagined you would be in.  I turned to so many special needs groups to find answers and I did, but it wasn’t until I shared our story did I not feel alone.  I have “met” wonderful people through Facebook and Instagram who are in this same Epilepsy Parent club as me, the club none of us wanted to be in but yet here we are.  I also found from sharing our story that I could help other parents whose child just had their first seizure and are going through those same emotions of fear, worry, anger and loneliness.  I no longer feel alone, my Epilepsy Parent club has grown, though every part of me wishes it hadn’t.  I don’t want you in this club, I don’t want you to know what this is like, I don’t want this for your child.  But I can promise you this, should you find yourself where I was six years ago, call me, text me, message me, you won’t be alone.

For more information on Epilepsy:

https://www.epilepsy.com/learn/about-epilepsy-basics

https://www.cureepilepsy.org/

The Ebbs and Flows

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This picture popped up on my Facebook page from a year ago.  The caption read “Favorite spot with my favorite human. Lots of doctors and specialist appointments recently, celebrating moving in the right direction.” This was before Reagan started a medication that we would quickly learn had side effects that included slower processing speed, extreme fatigue and a constant state of being in a fog.  Yet, I didn’t know that on the day this picture was taken and on that day I was hopeful.

Hopeful that we had found the medication that was going to give Reagan both seizure control and the freedom to be a kid.  Though this medication did give her some seizure control, it did not give her any freedom, that was taken from her.  You see this medication caused such extreme fatigue, she would fall asleep for hours after taking her morning dose, causing her to miss school and events.  With some tweaking of the dose, the fatigue faded, and again we were hopeful. Then we started to see the other side effects, the mental fog and lose of knowledge that once was. My little girl would be standing right in front of me, but it was almost as if she was hiding in plain sight.

These periods of extreme fatigue and mental fog have come and gone and come back again over the past year. This medication has been a blessing and curse, a blessing that Reagan has had seizure control and curse because it took her with it.  Thus, it’s time to start a new treatment plan and with this one I am hopeful. Hopeful for seizure control and hopeful that my little girl comes out of hiding.

Keto: Not a Fad, a Medical Treatment

Articles are circulating about how people are using the Ketogenic diet to lose weight and in-turn finding mental clarity, which equates to sudden know-it-all status.

Here’s the thing, the Ketogenic diet wasn’t developed for you or me or even to lose weight.  It was in-fact developed in the 1920’s to treat Epilepsy and control seizures by switching the body’s primary source of metabolism to a fat-based energy source as opposed to glucose.

I’m pretty fired up by all these articles and celebrities/people in general thinking they found the magic pill in the Ketogenic diet.  Why, you ask? Because within months Reagan will begin the Ketogenic diet.

No, I cannot start this at home, she will be hospitalized for 5 days, this is a medical treatment.  No, I cannot decide what and how much she eats, a dietitian will give us the guidelines. And, yes it will be similar to the Ketogenic diet all over the news, but I can tell you this, it’s also very different.  Reagan will need to change her medications from liquid to pill form, yes the liquid counts as carbohydrates.  Reagan will need to change her personal hygiene products, yes they too contain carbohydrates.  Reagan will need to eat on schedule so her blood sugars don’t drop and her glucose levels will need to monitored daily.

Reagan is seven, this diet is extreme for a child her age.  Especially for  a child who embraces food, eating out, cooking and baking the way she does.  Reagan is doing everything she can to understand what this diet entails, asking questions and making mental notes of the changes ahead of her.

Maybe Keto is your magic pill, I certainly hope it is ours too, especially since this is what this diet was intended for.

Dear Doctors, We are Moving In…

This picture was taken at roughly the 75th appointment we went to in 2018.  Yes, you read that correctly 75 appointments for one person and to be honest that number should have been higher but illness, vacations and sometimes a cancellation because a kid just needs to be a kid.

Parents of neuro-typical kids are probably reading this and wondering how is this even possible, while parents of medically complex kids are nodding their heads and going to check calendars to count the number of appointments they took their child to.

These appointments entail all the standards: the pediatrician, the dentist, the eye doctor,  and the ENT but then there is the Neurologist, the Orthopedic doctor, the physical therapist, the occupational therapist, the hippo-therapy lessons, the blood draws, the anesthesia evaluations and quite possibly one or two I forgot.  It does not include the surgery that came as a result of many of those appointments.

Yes, this picture was taken at roughly the 75th appointment in 2018, and yes at this appointment we were told there would be four other appointments…big ones.  Yes, there is a smiling kid and a Dad who spent several hours of his birthday talking about his daughters medical history.  What you don’t see is a Mom who though she is drained from the driving, the appointment scheduling, the medical jargon and the after visit summaries is beyond grateful to have a team of people who have cared for and supported her child.

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I am not Living with Epilepsy

I do not live with Epilepsy, but I live with Epilepsy.  I do not take the medications, but I call them in to the pharmacy, I administer them three times a day and I track the awful side effects. I do not experience the brain fog, the loss of cognition, the slow processing speed and the difficulty to keep up with peers, but I see it, every single day. I do not have seizures, but I do feel them deep down in every ounce of my body.  I am not sleeping for hours on end after a seizure, but I am exhausted to my core. I do not live with Epilepsy, but I live with Epilepsy.

I am a parent to child with lives with this awful neurological disorder. I am a parent who is angry, sad and frustrated and knows that my child and every person living with Epilepsy deserves a cure. I am not living with Epilepsy, I live with Epilepsy.

Why Now?

I have started and stopped this blog countless times.  I have turned to it to write about good days, bad days and the support of family and friends.  I have turned to it to get all the emotions out.  This week I broke down, like full on needed to be in bed crying all day, broke down. Epilepsy is hard.  It’s hard on the person living with it, it’s hard on the caregivers, it’s just down right freaking hard.  There aren’t many answers and often times it’s a guessing game.  Hardest of all, there is no cure.  Sit back and imagine if your child was diagnosed with an incurable neurological disorder. Here’s the thing you wouldn’t just sit back, you would fight.  You would fight for answers, you would fight for a cure.

So today,  I want to let you in on my fight and in on the world of Epilepsy.  Why today?  Because today, I finally had the guts to hit publish.

I have followed many Special Needs blogs over the years and their stories have helped me to know that I am not alone on this journey.  Thousands of other families are going through similar but different struggles on a daily basis.  If anything I hope this helps another family know they too are not alone.  The struggle is real and the weight and worry we wear (as parents) is heavy, but our kids are the greatest blessings, blanketed in strength, resilience and grace.