People often ask me if it isn’t hard for me, doing all of this on your own? And I think by myself, why hard for me? I’ve a full live, a great job, nice friends and family and yes, I’ve got two chronically ill daughters. But that is in the first place very hard for them. They’re the ones having to deal with all the pain and suffering and limitations in their daily life. And off course it hurts me to see them struggle through the day or when they have to cancel plans because the body just doesn’t cooperate. But still, it especially effects them and is hard for them. I can’t complain. But lately I’ve come to understand the question a bit more. In my last blog I mentioned my coping mechanism, a cabinet. And I’ve learned that most people cope in a different way. So when someone asked me this question yesterday, I thought; Yes, it is hard. Cause I miss my daughters. My daughters before they’ve become ill. My daughters full of energy who wanted all and preferably now. I miss the sparkle of life in their eyes. When I see pictures of a few years back their eyes are full of life and open for the world. Their eyes used to fill my heart with joy. Now when I look in their eyes I see fatigue and a dull look. I see in their eyes everything that has been and now no longer is possible.

And there was a time where a lot was possible. They took swimming classes, competitive diving, athletics, soccer, baseball. Not all at the same time, but sometimes it was. There was a time where the weekend started with competitive diving, then straight to soccer for Rosa, athletics for Jane, picking up Rosa, picking up Jane. Doing real quick some groceries, packing a picnic basket and eat at the beach. We enjoyed it very much. Taking long strolls along the beach and eating Dutch mini pancakes at Kijkduin and then go to sleep at night because you were tired of doing all of that. The days were to short, back then.

Competitive diving was the first thing that stopped. Jane traded athletics in for soccer due to pain whilst running, Rosa traded soccer in for baseball due to all the injuries, but loved soccer to much so traded back a year later. Unfortunately Jane had to stop soccer at all and not much later Rosa also stopped with all sports. School became too difficult, Jane couldn’t attend to her job anymore. Meeting friends became more difficult. More and more every aspect of their live was traded in for a little energy to get through the day. And so we are here now. The three of us, mostly together at home. A visit is nice, but costs a lot of energy. A little ride with the car, also nice and regrettably costs energy. So yes, you’re right. I find it hard, hard for them and hard for me to see my daughters struggle. You want the best for your children and you want them to have everything. But most of all you want them to be happy and healthy. And when I look in their eyes I don’t see happiness and I feel a sharp pain in my heart. So yeah, I find it hard to see my daughters this way. And I miss my daughters to the bone. But still I have to say that though I find it hard is not hard. Because everything I do for them I do with all my love. And I couldn’t do it any other way. Thing are now as they are, and we’re going to do everything in our power to make things better again. So please, share, donate and help get the sparkle of life back in their eyes.


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