In addition to the many expressions of support, we also received several times the question "how we keep going as parents." Of course, this question is not unexpected, because it is indeed not an obvious thing to continue doing. And yet there are some very good reasons ... .
Ella-Marie herself
Have you already seen the pictures on the blog? What you see is
a shiny and sweet girl. First and foremost, it is Ella-Marie
herself who is experiencing this. And it is precisely because of
her strength, that we can also move forward.
It is with enormous admiration (and with very small eyes in the
morning) that we always wake up around 6 in the morning. Next to us
is a girl who has had a few seizures that night. But she wakes up
with a big smile and immediately gives a big hug. "Good morning
daddy, did you sleep well? I did!".
It sometimes hurts to wake up, but if Ella-Marie can do it, so can
we!
Olivia
It's not just the three of us. That sweet little sister is also
happily running around here. And she deserves to grow up in a
carefree world as much as possible. With her merry little gymnasts,
her relentless perfectionism at school and her cheerful nature, she
provides the necessary distraction. And even that phrasing is not
entirely accurate, because Olivia is much more than
"distraction."
She is someone who carries the family. Someone who is always up for
her sister and always sees the positive in a situation. It is for
her present personality and for her future being that we move
on.
For us
Because we have been together for so long and are moving on. Because we are doing everything we can to make our children, as well as each other, happy. Because we are a little yin and yang (a serene mom and an energetic dad), creating a nice balance for our little ones.
When you wake up several times every night, it's not always easy to get out of bed in a good mood. When you have a chronically ill child in the family, there is stress and tension at times. But at the end of the day, we love each other to death and together we go out of our way to have the best for Ella-Marie (and Olivia).
Because we have to
7/12/2022. A group of 165 residents win the Euromillions of 143 million euros. We live in Heist-op-den-Berg, about 50km from this happy village. And so we didn't win!
But all kidding aside, we already got a lot of support from our parents (in law). However, we cannot count ourselves among the Musks or Bezossen of this society. And so we also have to keep on working.
And that is just as well. We are lucky to be allowed to work. Good colleagues are often underestimated, but we are both lucky to have such a good employer. Again and again, they look at our situation with understanding. And what could be more gratifying than a (virtual) coffee chat to take the mind off things?
Big shout out to our colleagues: THANK YOU!
Family and friends
You guys. Right yes, you guys!
Thanks to your kind words, messages, gifts, offers of help, we too find strength. We still have a great social life. And in our situation, we don't take that for granted.
Choose what makes you feel best, but from this non-exhaustive list we can choose: Delightful family days where we can get together with the parents (in law) and brother and sister (in law). Having proud godparenthood and godmotherhood over great kids. Playing with the cousins. Getting to see the friends from indoor soccer every week (and seeing 1,000 WhatsApp messages pop up every day). The walk with the neighbor. The mommy weekends with a merry gang. Going to Club Brugge with a diehard fan. Going for a drink with the comrades. Good food at a restaurant, . . More than enough warmth to pull us up!
Abbreviation TINA
A good friend of ours brought up Thatcher's famous words, "There is no alternative (TINA)." And that is absolutely true. There is no benefit to anyone if we were to crash. We must move forward and we must always look for solutions.
We greatly admire our neighbor (and now unofficial plus-granny) Simonne. She took care of her sick husband for years. And she told us, "At some point you have so much misery, you don't have time to complain." And that's fitting. Every minute we complain is a minute lost for Ella-Marie and for ourselves. So we prefer to talk about solutions, fun times and positive anecdotes.
As an example to others
Very often in conversation we are told, "our problem is
obviously nothing compared to your problem." However, we are not so
much for this broken-relativization. There are other "real"
problems. You have a right to be sad. You have a right to be
angry.
If we can then be an example for just a moment and give people
courage, we are satisfied. We know only too well that a listening
ear works wonders. That is why we are always there for you, should
you need a chat.
And sometimes we don't quite make it
There are days when things just don't work out. When heavy attacks have been going on for several weeks. When you're really afraid she won't come out of a seizure. Those are moments when you lie next to her in bed. You hear her breathing softly and you keep listening until you are really tired almost closing your eyes. Then you put your hand on her chest to feel her breathing. And when you fall asleep from sheer tiredness, your last thought is, "I hope you wake up in the morning."
Dark thoughts are unfortunately part of it sometimes. But then you can start reading back at the beginning of this blog. Then you know that there is a beautiful shiny, sweet girl waking up way too early again. And with a warm hug, the day begins again.