If Today Was Your Last Day
If you knew you didn’t have long left to live, how would you spend the rest of your life? Would you travel? Would you spend every good day you had with your family and friends? Would you put yourself out there and try something you were always scared to try? Gymnastics? Dance? Would you learn a new language or live abroad? Would you be grateful for every breath you had? Would you seize the day?
What if you had a child with a severe and life-threatening disease like epilepsy? Would you allow them to try new things? Would you let them travel and go to school and get into sports? Or would you do everything in your power to keep them safe from harm? Even if it costs them their happiness?
My daughter Remy was born with a rare type of epilepsy called PCDH19. When she was nine months old, she had her first of thousands of seizures. That first seizure lasted for 45 minutes and doctors couldn’t stop it. From that day forward, my ideas of what I would allow my daughter to do changed. The only concern I had was to keep her safe.
Fear Is Paralysing
After realizing that seizures were a part of Remy’s life, those first days and months were terrifying. I couldn’t shake the fear that a seizure could take her life.
You can’t get around that fear because it is possible and happens every day. There are more deaths each year from seizures than there are from breast cancer. Crazy right?
So not only does that fear sit in my subconscious mind, every time Remy has another seizure, I am reminded that that fear is very possible.
Wheres The Bubble Wrap
I remember coming home from the hospital after Remy spent six weeks there with 50-100 seizures a day, feeling terrified. What if she passes away? That thought was so paralyzing.
We did everything we could think of to make sure that fear didn’t become a reality. We kept hand sanitizer stations in every room of our house so that no one brought in any germs into the house. We had our boys take CPR training. We took turns sleeping so even when Remy was sleeping; there was someone watching her make sure she was breathing. We held her hands going downstairs. We got her a helmet; we didn’t let her climb on the playground or run down the street. I felt like if we all just watched her like a hawk for the rest of her life, she would be safe and never be in harm’s way.
If there were a bubble wrap suit I could have bought Remy to wear every day, I would have.
Paranoia Isn’t Healthy
But the fact was, we couldn’t keep that up. The constant paranoia and fear were halting our entire lives. We weren’t sleeping, couldn’t drive in the car without looking in the rearview mirror every 5 seconds (literally). We couldn’t let Remy play alone without holding her or having her on the carpet. It was hell.
Let The Poor Girl Play
Remy is a person who needs to move and explore and the more we prevented her from doing what she wanted, the more miserable she was, and we were.
But even as we let go of the reigns a little, that fear was always there. How could it not be?
We Have No Control
But the reality was that even if we did bubble wrap, Remy, or never took our eyes off of her, there was nothing that we could do to stop a seizure from happening or let alone control the impact of that seizure. A seizure is going to do what it’s going to do, and there is very little if anything we can do to stop it.
I Met My Hero
It was during that terrifying time in my life that I met a woman named Dawn. She joined the facebook group of families affected by Remy’s disease, PCDH19. I didn’t realize that day that Dawn would soon become my hero.
Dawns daughter Madeleine was born with the same type of seizures like Remy. Dawn and her husband tried every therapy and seizure drug out there to help Madeleine, but nothing worked. They scoured the United States getting brain scan after brain scan trying to find answers and treatment.
I saw Madeleine’s pictures on Facebook and was amazed at how elegant, poised and beautiful she was. At the time, she was about 15. I couldn’t believe all the pictures I saw, that she had a severe form of epilepsy because she was so full of life and looked like a happy teenager with no worries at all. It didn’t seem possible for a person to suffer and go through so much yet be beaming with glee that radiates the world as she did.
Hope And Possibility
I was inspired. If Madeleine can live a life so beautiful, maybe Remy could too. When I looked at Madeleine, I saw hope and possibility, endless possibilities. It was the first time that I looked at Remy’s future and saw a possibility of a great life.
I asked Dawn about their story. I assumed by all the pictures that I saw that Madeleine couldn’t have been one of the girls who was too impacted by epilepsy. I imagined that she might have had a few seizures in her life but nothing like Remy. Nothing like having thousands of seizures and hospital stays and emergency medical intervention.
Sadly I was wrong. Speaking with Dawn, Madeleine had a lot of hospital stays, lots and lots of seizures and even a brain surgery to do a job that no drug was able to do. Even then, after surgery, seizures still came.
It Doesn’t Get Much Worse
It saddened me to learn all the hardships that Madeleine has endured. It didn’t feel fair to see someone have to face everything Madeleine and family had to face. But I was intrigued even more
because even with everything they went through, they always lived life to its fullest.
I learned that Madeleine was a ballerina. I learned that she was bilingual and lived in France as well as the US. I learned that she was involved in the Special Olympics for gymnastics and won many gold medals. I learned that she had a lot of friends and family who she adored and who adored her. I learned that she traveled the world and went to places I can only dream of like Ireland, Turkey, Hawaii, Egypt, Cicalee, St Tropez, Spain.
The same girl who spent so much time hospitalized, so much time being sick in bed, so much time being a medical mystery had lived a life fuller than me or anyone else that I knew.
Real Definition of a Super Mom
Dawn inspired me as a mother. I asked her how she did it. How did she manage all of her fears and at the same time giving her three children the full life that she had?
She told me that there were hard days. There were hard years and hard months. There was a lot of worries, a lot of therapies, doctors appointments, research, hospitalization. She chose to be thankful for the good things in their life because the bad things could be just around the corner.
Dawn and her family started a tradition. They began to have Champagne Thursdays. Champagne for the adults and a sweet bubbly juice for the kids. Every Thursday, no matter what was going on, they would cheer to something they were thankful for. They celebrated every spelling test, every good grade, every ‘good try,’ everything. Dawn said that life is too short not to celebrate. She told me that having gratitude for the little things is what kept their family going.
Hearing Dawn tell me about their intentional gratitude, shifted something in me in a big way. How could Dawn and her family be so thankful even after going through all they have been through? How did they find it in them to travel and let Madeleine dance and do gymnastics and go to school? How was it that every picture I saw of Madeleine, she was so happy and smiling?
The answer is because their family always knew that they didn’t know what tomorrow would bring. They always knew that if they were going to have one life, they were going to live it in the best way possible. If there was a bad day spent in the hospital, there was going to be five good days doing amazing things and celebrating amazing accomplishments.
Dawn and her families intention, to give their medically fragile daughter a life of abundance and opportunity is an inspiration to us all.
A Parents Worst Fear Coming True
On February 25th, 2017, I saw a facebook post I never saw coming. Madeleine passed away from a seizure.
It couldn’t be real. How could this happen? She was so resilient. She just celebrated her winter formal and was about to turn 17. She has had more than 20,000 seizures and recovered from all of them. Why did this one seizure have to be different? She was so full of life and so strong. It just couldn’t be real.
But it was.
I thought of Remy. I knew in my heart that this could be Remy. No doctor or person on the planet could or would say that it won’t happen to Remy because it could. This could be any of us really. None of us have any guarantees.
A Change In Perspective
It was then that my fear of losing Remy shifted. Instead of being even more terrified of something bad happening to Remy, I was inspired to change my perspective.
I went from “what if a seizure takes Remy’s life’ to ‘If a seizure does take Remy’s life, did we give her everything we could give her? Did we encourage her to take risks and put herself out there? Did we celebrate the good days and were we grateful for every single accomplishment?’
I will have to say at that point the answer was a big fat No. I spent all of my energy trying to figure out how to protect her and worrying about something bad happening even though I didn’t really have control of it. My energy wasn’t focused on giving Remy the best opportunities; it was focused on keeping her alive.
I understood right then why Dawn and her family decided to celebrate life and let their children explore their interests and dreams. I understood why it’s important for us to put our energy into dreams and not wasting it on worry and fear. I understood then how essential it is not to take our time for granted.
I understood why it’s important it is to spend none of our energy on the “what ifs” and all of our energy on “what could be” I understood just how many blessings we have to be thankful for. I understood the importance of Seizing the Day.
Of course, it’s important to protect ourselves and our children from harm, which Dawn and her family did at all times, but if there is no balance, there is no life worth living.
Fulfilling Her Purpose
If Madeleine were bubble wrapped and hidden away like I know her family probably felt compelled to do at times, she would have missed out on the incredible life she lived.
She would never have won gold medals and danced on a stage and traveled to Egypt and lived in France and attended her school dances. She wouldn’t have that glowing beaming smile she always had and wouldn’t have been able to celebrate her awards in school and her family who she adored. She wouldn’t have been able to inspire and impact so many of our lives like she did.
She wouldn’t have been able to fulfill her purpose in this life. She wouldn’t have been able to change someone like me, who never even had the privilege of meeting her in person.
What I Know For Sure
What I know for sure, is that we all can learn from Dawn and Madeleine and their family. We all can learn that there is no problem too big to prevent us from smiling. There is every reason to live our best life possible and every reason to give that life to our children, even if they are medically fragile. We all can learn how to seize the day.
I will think about Madeleine and the impact that she has left in my heart every day of my life. Her essence lit up the world and shined across countries and states, all the way to me.
She taught me that not only can we use our gifts and talents to illuminate the world, we can also use our pain and suffering too. Madeleines purpose and impact in this life have touched thousands of lives and her essence will live on forever.
I will always aspire to have the joy that Madeleine had. I will aim to be like Dawn and her family, to toast to whatever I can be grateful for, even if it’s just making it to the end of the week.
What will you toast on your champagne Thursday? What are you grateful for? What problem is too big in your life that it is impossible to be thankful for something?
Thank You Madeleine
One day when I fulfill my purpose, and my days on earth end, I can’t wait to meet Madeleine. I want to thank her for the impact her life meant to mine. It will be such an honor.
The Sad Truth
Unfortunately, there is nothing that we can do or could have done to prevent what happened to Madeleine. The truth is, PCDH19 epilepsy is life-threatening and the only thing we can do, is help the people trying to find answers.
The PCDH19 Alliance is a nonprofit organization run by parents of children with this disease. The Alliance depends on donations to fund research to understand as much as possible about this disorder.
One day there will be a cure and better treatment. I know it. But no progress can be made unless we help by contributing to the group dedicated to finding answers.
There are thousands of other children just like Madeleine and Remy that depend on us to give them a better future.
You Can Help
To learn more about what its like for a parent of a child with PCDH19, You can read below.
Also, please share this post and help by keeping Madeleine’s spirit alive. If you would like to leave a comment, if you do it on the actual blog post, it will be here for everyone to see.
We miss you, Madeleine. Thank you for being the inspiration that you were and changing our hearts and lives forever.