donderdag 25 juli 2013

Things have changed, but on the other hand...

... essentially nothing did.

Liko is doing great, vibrant and happy as he is. You are still so struggling to make it through your days.
We're all trying to get ready for another Van Bijnen/Markowski-offspring to be born October 2013. How about that?

The meaning of a life, what's that about? We even got interviewed about it, being your parents, the mom-and-dad of a child whose life is so much about surviving. Still we cannot tell anyone what all of this is like. Focused on you and you alone: why should someone suffer so much, being so uncomfortable during the days, and nights too, let's not forget that.

Nothing gets to you, yet anything can be too much noise or a hassle to you.
Still I know, my face next to yours, not too close 'cause that'll bother you, gives you peace. The way only your mother and I can hold you, usually soothes you. My fast-trembling feet in the night, trying to ease you, or "Kalle, Kalle, Kalle... Kalle mannetje........ Kalle sußer.... Kallelein.... Kalle knappe man... Kalle" because still we hope at least óne word will enter your brain.

It's just so sad, all of this seems to slowly slip out of our hands. Things are getting more and more complicated, epilepsy-wise and body-wise too.

Looking at you, your beautiful feet and legs, now moving so spastic, your sweet lips, your cuddly cheeks and hair, your great buttocks (thanks Google Translate, I'd choosen ass :-) instead) and eyes that only lit in a seizure I feel so sad: we made you so damn perfect.

Just love.
But all the crying, the wailing makes it so hard to keep on going, day after day.

Though we know there's nothing for you to give, we need your love.


2 opmerkingen:

  1. Lieve mensen,

    Ik had er eerder nooit zo over nagedacht maar toen ons zoontje, door toedoen van medicatie, veranderde in een apathisch voor zich uit starend jongetje, realiseerde we ons dat we eigenlijk helemaal niet veel nodig hebben... Contact, een teken van herkenning, en misschien zelfs een glimlach... dat is ALLES waar je op teert als ouders. Dat maakt al alles zo veel lichter. Als dat er niet (meer) is, dan is dat zo ontzettend zwaar. Ik wens jullie heel veel kracht toe om Kalle's zware lot, samen als gezin, te kunnen blijven dragen.

    Groetjes Ilse