A year ago, a beautiful blonde girl's world was drastically altered. Many opportunities were unintentionally, but oh so necessarily, taken away from her. During quiet moments we sometimes see Ella-Marie staring ahead of her. What would be going on in her head?
Why me?
Things are not always going well. Ella-Marie often struggles with her limitations, which unfortunately lead to frustration. There are sometimes harsh words, weeping and often running away. When we go to see her after a few minutes, we find her lying on her bed with tears in her eyes. After some talking, there comes the hard and justified question: "Why me? Why did I have to have epilepsy?"
Back to the past
"Daddy, I want to go back to the time when I didn't have
epilepsy. Back then I could run around, jump, play and dance."
There is a lot of sympathy for that comment. Until she was 3 years
old, Ella-Marie was always just in time with the well-known
"children's jumps." Sitting, crawling, stepping ... each time
Ella-Marie showed that she could do it after all. That was because
she was a little fighter even then. She was born 6 weeks early, she
was less than a kilo and a half in weight and at 40 centimeters she
was really a tiny doll. But that little doll did receive the best
care from day 1. Midwife (and still good friend) Maxime was there
first to pamper Ella-Marie properly. The many visits to Pulderbos
show that there is still a lot of love between them. In the
meantime, physiotherapist Griet has also known Ella-Marie for many
years and there, too, the fine bond will remain for years to come.
And so we can mention many more people who have meant a lot in
Ella-Marie's life.
Rationally, we know all too well that the world never looked entirely rosy. With Ella-Marie's illness, the right hemisphere continued to deteriorate anyway. Time was not in our favor and the attacks kept coming on at an accelerating pace.
There is no conclusive answer to that question of the past. A hug and much understanding is all we can give then.
Unhappy
Ella-Marie is really unhappy in Pulderbos right now. When she comes home on Friday evening, we notice that a lot of frustration and fatigue must be coming out of her. Weeping, quickly irritated and full of incomprehension, she walks around the house very restless. It is only after the traditional Belgian fries and when we are sitting in the couch with a blanket that some calm comes.
The reason why there is so much frustration, we should not look far. After a year, she is completely fed up with her little room at the rehab center. The one-on-one sessions take a lot out of her strength. Just dreaming away, as is possible in the anonymity of the classroom, obviously doesn't work here. During playtime, she likes to play with other children, but her good intentions do not always come out in a positive way. She does not know her strength when she plays with small children, and the big children are not present in the rehabilitation center long enough to build a (trusting) bond with them.
When a comment is made about her behavior, she gets angry rather than calm. This has everything to do with a sense of injustice, through powerlessness and through sadness.
It should be obvious that the people in Pulderbos deserve a
trophy. They really show angelic patience with Ella-Marie. And
surely that has brought (very) much progress. We are eternally
grateful to these people for their daily efforts. Without them,
Ella-Marie would never have gotten this far.
So the frustration and unhappiness has absolutely nothing to do
with the people in Pulderbos, but rather with the current
situation.
Points of Light
And yet we see some light at the end of the tunnel again.
Because the last 3 Sunday afternoons could only be about one topic:
home school IMG.
On Monday, Ella-Marie got to visit her old classmates and enjoy the
attention to the fullest. Then she came home very proud because she
already scored 10 out of 10 twice on a test. To be fair, the other
time she had an 8 out of 10 :-). Anyway, such a success experience
is really an added value for her.
For Ella-Marie, March cannot be over soon enough. The countdown has really started. 12 more sleeps in Pulderbos, 24 more days and she will close the door permanently (?) behind her.
And she will do so while walking. Because with all the many exercises, she can already get around well without a wheelchair. Friday's exercises, in which Ella-Marie hangs out in a robot suit, provide confidence. She can climb stairs and even descend stairs (with support of her right arm on a handrail).
Never give up
We never give up. Ella-Marie has shown that you can move forward. Even in difficult situations, she has kept going.
So we as a family will do everything we can to give Ella-Marie an updated and happy house and home. What is now a huge cloud of dust should become a beautiful bedroom and bathroom within a few weeks. A place of her own for Ella-Marie where she can grow. A place where she can learn to cope with her limitations, where she can find stability and peace and where her future can be worked on.
We cannot see into Ella-Marie's little head, but we hope she knows that there is light on the horizon. Beautiful rainbows will appear and even if the path is not always easy, we will always be there to help them.
Keep that new world coming!
