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The Truth About PCDH19 Epilepsy (From a MOM)

The Classic Definition of PCDH19 Epilepsy Goes Like This…

PCDH19 Epilepsy is a condition with a broad spectrum of severity in seizures, cognitive delays and other symptoms, which are all caused by a mutation of the PCDH19 gene on the X chromosome.

PCDH19 Epilepsy To a Mother is an Entirely Different Definition. To Me, it’s…

The phone call from the neurologist saying “you better sit down for this.”

It’s your picture-perfect life quickly turning into a nightmare that never ends.

It’s looking at the seizure log and realizing your child had 75 seizures in one day.

It’s the color of blue that fills your child’s face because they aren’t getting any oxygen.

It’s agreeing to try a drug that turns your child into a vegetable and knowing that you have just made your child a human Guinea pig.

It’s sitting in the hospital cafeteria to eat your first meal in 3 days and hearing from the intercom “code blue, room 244” and knowing that’s your baby girl, again.

It’s leaving your other children at home with their grandparents for six weeks, while you sit at your seizing child’s bedside in the hospital and knowing it’s going to cause emotional damage to your other children.

It’s realizing that your child can’t be fixed.

It’s learning that PTSD doesn’t just apply to people in the military.

pcdh19 epilepsy

It’s pleading with the hospital not to discharge your child home, because you don’t know how to take care of your own child by yourself.

It’s finding that showers, food, and sleep are luxuries that you simply can’t afford.

Its signing your 8-year-old son up for CPR training because you know at some point, he will need to use it on his sister.

It’s Coming Home From the Store to Find an Ambulance in Front of Your House and Knowing it’s Going to be a Long Night

It’s seeing your child die in your arms and waking up in a cold sweat relieved that it was just another nightmare. A nightmare you have had hundreds of times.

It’s turning that “college” savings bank account into a “special needs trust” so that your child with pcdh19 epilepsy can be taken care of the rest of their life.

It’s cursing at God and demanding that He “DO SOMETHING!!”

It’s devising a plan to actually trade places with your child only to realize that you might be going crazy.

It’s doing everything you can and knowing it will never be good enough.

It’s planning your vacations around places with good pediatric hospitals.

It’s hanging on to the false hope that one day your child might ‘outgrow’ her seizures.

It’s that U-turn you make while driving to your cousin’s wedding because the babysitter just called you to tell you that your child just seized, and you need to come right away.

It’s the 4-hour IEP meeting at school pleading with the district to provide a 1:1 nurse to follow your child around while dragging an oxygen tank, just in case that seizure hits on the playground.

It’s seeing the milestones in everyone else’s children and knowing that if one gene were different, your child would hit those milestones too.

It’s Forcing Drugs down Your Child’s Throat While Both of You Are Crying Because You Don’t Want to Give Her Drugs, Just as Much as She Doesn’t Want to Swallow Them

It’s the celebration of each seizure free day and the stress of the growing behavior problems because of it.

It’s crying in the shower, at the grocery store, the library, the doctor’s office, the backyard, your car, Costco, your bedroom and everywhere else you have ever been.

It’s seeing the life being sucked out of your child’s face as they seize and stop breathing and reporting back to your husband that it was ‘just a typical seizure.’

It’s raising a child with epilepsy and being called a supermom after you just spent the last hour wondering why you ever decided to have children.

It’s crying out for help and support and receiving blank stares and pity.

The Truth About PCDH19 Epilepsy

It’s waking up at 3 am to check if your child is still alive.

Its wishing you had taken your child to the park when you thought of it because now it’s too late, she is stuck in the hospital having seizures.

It’s the vacations and parties and events and outings that you cancel because your whole life is now a family emergency.

It’s Dreading the Day That You’ll Talk Your Child out of Ever Having Biological Children of Her Own Because She Doesn’t Want to Pass This Disorder On To Her Kids

It’s that extra zero at the end of your electricity bill because you haven’t turned off the AC in over five months due to heat being a seizure trigger.

It’s jumping at the opportunity to “try” that experimental drug that’s never been tested on humans, because nothing else out there is helping.

Its googling “signs of concussions” after another fall from a seizure.

It’s your friends just ‘not knowing what to say.’

It’s seeing the doubt in the neurologist’s face when you ask, “what do we do now?”.

It’s the text you send to your child’s teacher at 3 am because your child is going to miss school for the 4th time this week.

It’s that thud in the next room and you wonder if what you will find on the floor when you run in is teeth or blood.

It’s directing the hospital on how to treat your child and the hospital thanking you for giving them advice.

It’s looking through the Facebook pictures of that party that you were supposed to be at.

It’s the 40 pounds you gain and shrugging your shoulders because you just don’t care.

It’s knowing the time to educate yourself and knowing when it’s better to just stay ignorant.PCDH19 Epilepsy A Moms Perspective

It’s the Unconditional Love You Have for Your Child and Being Willing to Do Anything for Them

It’s your child teaching you more about strength and resilience than you could have ever learned from anyone else.

It’s the email you receive from your friend telling you “you got this!”

It’s hearing your child say POP when she has never spoken a single word in her four years of life.

It’s watching your child sleep so peacefully after the 5th seizure in a row and realizing it’s the most beautiful sight you have ever seen.

It’s learning to be just as strong as your child is because weakness is not an option.

Its thanking God for placing the most precious child in your hands and wondering how you ever got so lucky to know such a beautiful soul.

It’s the lifelong bonds you make with the other PCDH19 Epilepsy families because they just ‘get it’.

It’s your church bringing dinners, your family taking time off work, friends donating money, strangers offering assistance, teachers crying, charities providing support, nurses giving hugs, doctors giving advice, paramedics holding your child’s hand, communities coming together, strangers offering hugs.

Its phone calls and emails and text messages and visits and care packages and flowers and cards and donations.

It’s more love and compassion than you ever knew existed, being poured onto your family.

It’s knowing that if you could do things over again, you wouldn’t change a thing because your child is one of the best parts of your life.

It’s the impact your child has on everyone she comes across and watching her as she helps change the world.

What does PCDH19 Epilepsy mean to you? Leave a comment below and share your experience.

Live well,

pcdh19 genetic mutation

To donate to the non profit organization that is helping to find better treatment and a cure, I ask you to help however you can with the PCDH19 Alliance.  Thank you so much

  • Zach Warshawsky

    You are Amazing Jody Warshawsky! Thank you for putting it all out there and documenting our journey, I am so excited to continue seeing your writing and stories here 🙂

    • Jody Williams Warshawsky

      Thank you Zach. Those words mean the most from you because you are so amazing yourself through all of this. Thank you for all of your support in this new venture and for helping me stay sane through this parenthood stuff.

  • Henry Hamamjy

    Jody thanks for sharing your story. You are an amazing women and Remy and the rest of your family are very lucky to have you. I hope you continue to share Remy’s progress so you can educate others and give them the courage they need.

    • Jody Williams Warshawsky

      Thank you so much Henry. You are the one who planted the seed in my head about starting this blog and sharing our journey. I am so grateful for your friendship and advice. Thank you.
      I really hope it can help those in similar situations.

      • Henry Hamamjy

        It will help more people than you think! It is always encouraging to know that someone you can relate to has gone through it! That alone will give people hope! A Lot of people hear ideas, but never follow through, great job on following through and actually doing something about it by informing others! Good Job Jody!

  • Sarah White Wolf Whalley

    I don’t understand this type of epilepsy. However I do totally understand some of the fears. The what was that thud. The not breathing and turning blue. Is he going to remember who I am? I remember the 85mph drive down the thruway because he fell down concrete stairs at work. It’s been a ride and a half. I’m thankful it’s over. My husband used to have seizures. That is hard enough. You most definitely a strong mom to be able to talk about what your daughter goes though. Hopefully one day very soon she will be healed. Eh eh eh. Please don’t say it can’t happen. For now Love and cherish that beautiful life you’ve been given

    • Jody Warshawsky

      Hi Sarah, I am so sorry for your husband. I am glad he doesn’t have seizures anymore. How long has it been?
      A fear I have is how much more remys seizures will impact her the bigger and heavier she gets. It’s better though that I don’t go down that rabbit hole. It’s hard not to though
      Thanks for your comment and sharing part of your journey.

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