In Roman times, milestones or milestones were placed along the famous paved long-distance roads. These stones indicated the distance to the nearest major site. In today's project management world, milestones are often used in function of important moments or announcements in the project's duration. We never thought of Ella-Marie's surgery as a project, but a lot of milestones have popped up in her life over the past year.
Milestone: 1 year after surgery, still seizure-free
On March 11, 2023, hundreds of people anxiously read the first
information about Ella-Marie. It was the day after the major brain
surgery.
It was also suddenly the first day of a very nice series of
(without exception) seizure-free days! Many of you had also noted
this in your diaries, because on March 10, 2024, we received many
fine messages and a bottle was cracked! What made it even nicer was
the message a few days later with the decision to phase out all
anti-epileptic medication. So the main reason for the surgery
clearly achieved its goal! We hope that the severe disease will
stay away forever. Follow-up will be done through the University
Hospital in Leuven, where we will now not only go to pediatric
neurology, but also pediatric orthopedics may welcome
Ella-Marie!
Milestone: 1 year of Pulderbos
The surgery had a huge impact on Ella-Marie's life. From that day on, she only saw half of the world, struggled with a particularly severe physical disability and would permanently be left with a lot of mental work.
From the UMC in Utrecht, Ella-Marie moved directly to the UZ in Leuven before ending up in Rehabilitation Center Pulderbos. On April 3, 2023, eternal enthusiast Sam was waiting for us on behalf of the guidance. That well-prepared guidance welcomed Ella-Marie with a beautiful Efteling picture in her little room.
March 29, 2024 will be a day with an incredible double feeling. FINALLY Ella-Marie may go home, but of course now it is up to us. Together with Griet van Akketuut, the IMG teachers and, of course, everyone who cares about Ella-Marie, we are going to work hard. Working every day to make sure there will be as stable and independent a life as possible.
The works in the house are almost finished. Ella-Marie will have her own ground floor room and a custom bathroom will also be within reach. The costs, despite tremendous efforts by friend-at-home-Danny, have run high, but for your children you will do anything.
Milestone: 1.5 years of this blog
Through this site we have always tried to keep you informed. We always tried to paint a picture of how Ella-Marie was doing in a beautiful and honest way. We showed our fears and hopes, our good and bad moments and of course we shared various highs and lows.
The support we received from you during our search for a cure for epilepsy was insane. Many of you took the time to read the blogs, sent encouraging messages and how happy Ella-Marie was with the gifts she received from you!
After the final interviews in Pulderbos, it became clear that the situation will remain more or less as it is now. Great progress we do not have to expect anymore and it is now time to look for a stable living situation. So there will be little news to report and that is why we have decided to stop this blog.
We will keep the site open for a few more weeks so everyone can read back. We are going to put the collected work into a booklet, so Ella-Marie can always look back on this period.
Milestone: Forever
Dear Ella-Marie,
How we would have loved to give you a normal life. One where you can happily skip through life. Where you can easily make friends and sweethearts and where you can run and ride your bike, dance and jump recklessly. A life where you can see the world fully and where the caress of the wind on your soft hands gives the same feeling on both sides.
We had to make a choice we never wanted to make. You were born a little fighter, but even the strongest go-getter couldn't stand up to the brain damage you had. The epileptic seizures were too frequent, too severe, ... too much.
A long time ago, you indicated to yourself that the seizures had to stop. I will never forget the look you gave during the hospital visit. Beautiful blue eyes, but how tired they were. "Dad, please make the trembling stop. I can't anymore." It was those words, said so clearly and so powerfully, that gave the courage to embark on this journey.
It was exactly one year ago. A sweet, beautiful girl entered the hospital knowing there was no turning back. You were so brave as you were brought into the operating room on the bed. For a moment I thought I had lost you, but 9 hellish hours later you showed a first smile.
A year later, there is no longer a little girl sitting in front of us, but a strong, handsome young lady. In every way you have changed so much. Still as handsome, still as cuddly, but 15 inches taller and oh so much more life wisdom and experience added.
The path you will have to follow will not be easy. Both
physically and mentally, the road ahead will be full of obstacles.
The world is a beautiful place, but it is not always and everywhere
perfect. And you will have to deal with additional difficulties due
to your post-operative condition.
But know that you are forever our dear daughter. We will do
everything in our power to overcome the obstacles together. There
are also so many people who love you so much. Besides dear family,
top friends and ultra-professional (school) counseling, you will
encounter people who will want to help you.
We hope you will have the strength to change what you can change,
the courage to accept what you cannot change and the wisdom to know
the difference between the two.
We will be there. Forever.
Afterword
Thank you for reading this blog. Regularly you gave me feedback on my writing. The blogs were also a way for me to be able to process things, organize thoughts and bring structure to the chaos of this world.
It really hasn't been an easy time and the realization is all too real that life is not going to be smooth sailing. When we chose children, we assumed we could "live with" the daughters. We certainly will, but for Ella-Marie, we will also "live for her."
A special thanks to my parents who always checked the texts. Without them, there might have been some mistakes more often than not.
I am closing the writer's story. Who knows, maybe someday I will come back. Just let me know if there is anything I can do for you.
And until then, I hope to see you back in the real world soon and with a nice smile on your face. Because the world is no pony camp, but a friendly greeting always makes the sun shine a little brighter anyway.