Ella-Marie is a special girl. Almost 3 months ago, she faced a tremendously difficult challenge and the last days before surgery were a mix of mixed feelings. After the surgery, despite the pain and paralysis, she faced a new life with good spirits. That positivity was enormously contagious and the previous two and a half months flew by. The great ordeal was looked straight in the eye and with pride we saw Ella-Marie take steps forward. But of course, it can't be party every day....
Really homesick for the first time
Last week it was then. During the extended weekend, we saw Ella-Marie become a little quieter. Some frustration was already surfacing and English curse words were shouted at just about any object that got in the way. Not that this wasn't the case before (an unexpected object on the chosen path might already be in the wrong place and provoke some reaction), but it was noticeably more so and it came sincerely from a deeper anger. Thinking at first that she was just tired, we put Ella-Marie to bed a little faster to rest. And it was at one of those moments of rest, sitting between Mom and Dad, that we saw real tears.
"I don't feel so good. I miss you guys so much and I don't want to go to Pulderbos anymore. Why do I always have to sleep alone and you guys go home? Can't you stay here or can't I just stay home?"
The difficult choice between "being there for the family" and "being there for the family"
As a dad, I take the blame. The last 3 weeks have been hectic. At work, we are on the eve of a hugely positive and handsome challenge. And precisely to meet that challenge, I was in Strasbourg, Budapest and Gdansk. On top of that, I have also been in Toronto, Chicago, Bielefeld and Desenzano in 2023 and you soon know that unfortunately I cannot always be there to put Ella-Marie to bed.
It is an enormously difficult exercise to make. Because of the
situation, we realize all too well that Ella-Marie will not be
among the big earners in the job market. So we are trying to "be
there for the family," by working hard and building up a nice
savings for later. But on the other hand, we also want to "be there
for the family," by being physically present.
No trips abroad for the next two weeks, so the schedule is a little
quieter. Time to be there for the family!
Hugs and talk
There we sat on the bed. Listening together to Ella-Marie express her frustrations in a very clear way. "I really hate my wheelchair! People look at me and I just want to be able to walk." Ella-Marie's harshest statement was yet to come. "Why did we do all this anyway? I feel bad!". At that moment, a thousand negative feelings go through your body. And really there is only one good solution then: say nothing and give a hug. Because sometimes no words can help and silence is the right answer.
Back in the right direction
June 3, Thursday night, was the low point. Yelling and raving, crying, frustration ... everything had to come out. Ella-Marie, however, had had a great day, with wonderful kubben and a nice visit from Maxime, Louise and Kamiel. During dinner, Ella-Marie was still laughing and talking and she seemed relaxed again. But when mom Annelies went to put her to sleep, nothing seemed right anymore. Then, after a very long evening, she did fall asleep... and the next morning was the beginning of a new positive chapter.
Parent contact 2: we are starting to like it
Papa Pieter was back in the country and in the late afternoon we
were expected for a new parent contact in Pulderbos. Mama Annelies
had spoken with teacher Conny a few days earlier and when there was
singing, it was the praise we heard.
Ella-Marie is reading briskly and well. Writing is going smoothly
(small note that she clearly did not inherit the beautiful writing
of the mom) and she follows very well during class. Mathematics we
are trying to rebuild from the basics, but as reported, nuclear
physics will not be part of the future curriculum. Still, in
general we see a positive evolution, which allows Ella-Marie to
process more and more material faster.
The ergo and physiotherapist were also extremely satisfied. It was especially noticeable that Ella-Marie gives everything every class. She never complains, will do everything as it is supposed to be done and even wants to do extras to learn some more. As a result, she is already more in control of her left arm. An object on the table can already be moved with a kind of tennis motion. And the physiotherapist is working hard on a good walking technique.
When stepping, we pay particular attention to getting the technique right. If we want to go too fast, Ella-Marie can learn a wrong way of stepping. Getting that right is a hopeless task. So it is very important not to step as fast as possible, but as correctly as possible. With the help of a leg splint this actually works quite well, although sometimes there are some abrasions at the heel, which can cause some pain.
Scared for a moment, but not actually worried yet
For the first time, we were also told that epilepsy was
suspected. Once, Ella-Marie was talking on the phone and had put
her cell phone next to her. She blinked her eyes a bit and there
was little response. The supervisors had seen this on camera and
walked to the room. But there Ella-Marie did appear to be perfectly
responsive. Even during a conversation with the psychologist, she
blinked her eyes a few times.
Whether it is epilepsy, we absolutely do not know. The supervisors
prefer to keep an extra eye on everything and better to warn once
too often than not to report it. In fact, we still assume there is
no epilepsy. At our house, there hasn't been a single signal yet.
We do still keep the monotherapy at the same level, but we are not
going to increase it. In theory, that increase should be, because
Ella-Marie is growing solidly, but as long as there are no obvious
seizures, we will keep everything as it is.
Double celebration
Last weekend was particularly busy. On Saturday morning, we had
a very special breakfast planned at our house. After all, the
dearest grandma in the whole world retired! And to celebrate, we
invited them to our house as a surprise.
Still a special extra word about and for Omi Marleen. Every day she
is ready to help us. Babysitting the children, helping in the
household or a cheerful chat? She does it all with a smile. Having
worked at City Hall for decades, she is secretly also a Famous
Heistian. For it is often with some pride that I can report that I
know "Marleen from op 't gemeentehuis." For those who are looking
for a sweetheart, I can only recommend that the criteria also
include "a good mother-in-law" on the list. If you can clone them
with Marleen you will get a wonderful woman who is tremendously
supportive, shares life experience and will go out of her way to
make everyone happy.
Thank you dear Omi!
In addition, we also got to celebrate our uncle Danny. The young man turned 60 and gave a wonderful party in one of the well-known party halls of Hulshout. A nice gathering, good food, beautiful weather ... everything was as it should be. And Ella-Marie enjoyed being with the other children. A very nice moment was when she was approached by a peer from another party going on there to join a game. This positive approach to Ella-Marie in her wheelchair could not have come at a better time.
Working!
Opi Alex, neighbor Simonne, Olivia and daddy Pieter started the first real works on the house. The whole driveway had to come out and in 3 days we managed it. A broken back, painful knees and a few tears later, daddy Pieter had to give in to the over-60s. Brave people, those retired peops! :-)
We have also been visiting kitchen makers and bathroom specialists. The quotes are starting to come in and we hope to make a final decision very soon. Next week the first excavations will also be done, so everything is really starting to take off!
Small Luck
Annelies or myself are going to put Ella-Marie to sleep every night in Pulderbos. Since the weather was still nice, I decided to take another walk with Ella-Marie. On the way out, our hefty daughter very proudly pointed to some paintings on display in the entrance hall.
A project called "Schoolart" is running at the school. The students create works of art and from today (June 5, 2023) you can also buy them yourself. By doing so, of course, you also support Pulderbos a little.
- Ella-Marie participated in one painting. More specifically, she drew the circles at the bottom right (near "only"). Needless to say, we MUST purchase this painting!
- As you know, we are remodeling all of our downstairs. Ella-Marie is getting her own room on the ground floor and we are still looking for decoration, so this fits perfectly!
- Could there be anything more symbolic like an "eye" done in two? Ella-Marie sees half the world
- Despite the half eye, Ella-Marie remains super positive and there are "good vibes"
- Ella-Marie can finally start dreaming a little again. Dreaming of a better future, without severe attacks
- It is a girly painting and the pink tones suit our happy girl well
- We support Pulderbos and the school
So now what?
A combination of work, Father's Day celebrations, attending gymnastics parties, a meeting with the UMC and many other things are on this week's very busy schedule. The focus in the evening is very clearly on Ella-Marie so that she does not feel alone. At least this evening she was falling asleep very peacefully, when I said to her with a last kiss: sleep tight beautiful girl, I love to see you.