I clearly remember when we first entered the Máxima, on the stretcher, brought by ambulance. And, how we were immediately kindly greeted and escorted. They knew we were coming, who we were, and that felt so welcome. In a way, I immediately felt a kind of peace caome over me; here they know what to do. It's a place you'd rather not want to be, but the best place we could have wished for Charlie's treatment.
Sometimes it felt like a getaway
Both Charlie and our oldest daughter Ruby never mind going to the Máxima Center. We always tried to make the best of it. We spent the longer scheduled shoots there with the whole family. And even grandma stayed over once. As bizarre as it sounds, for the girls it sometimes felt like an outing. They especially enjoyed all the play areas and the gym.
For me, the Máxima Center stands for child-friendly (all the facilities and supervision), fellow sufferers (we are there together with other parents who are going through the same thing) and expertise (the most knowledgeable practitioners and researchers work there).
Give structure to your day
If I may offer a tip: try to be together as a family whenever possible and use the facilities at the Máxima Center. What also helped me, especially on long days, is a day structure. Breakfast in bed together, downstairs to the coffee bar for a nice coffee, exercise in the gym or outside. And on the days when this is not possible: look for activities that can, such as drawing together on the whiteboard or pasting window stickers. Charlie could play for hours with the little kitchen on the bed with macaroni in it. The child life specialists brought that for her, so much fun.