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Always different

Sometimes I look at Vera and all I see is her big smile. And even though she looks different from an average child, I see a small, perfect girl. vera-lachtstrip

I make sure to enjoy those moments. Just like the times when strangers in the street think I am pushing a large baby in the buggy and I do not correct them.

Because even though we are (fortunately) currently not dealing with health crisis after health crisis like in the first two years of her life, there is still so much to take into account.

I do not like to complain and most of the time I manage to stay positive and focus on everything that is going well and enjoy the moment. And I don’t want to be an overly concerned mother either, there are times I feel I may be exaggerating in my alertness. But, unfortunately we are constantly confronted with the fact that Vera’s body does not function like the body of a healthy child. When Mieke falls, has a bruise, coughs or is cold, we take care of her and she recovers. But with Vera, our brains immediately open up a large file with areas of attention, possible scenarios and treatments. Luckily, nowadays Vera can take a fall without breaking a bone and we can weather through a cold with home care. But we cannot take this for granted, we are always alert when something is going on.

Since I am/was an art therapist I recently made a drawing of Vera and her body. For each body part I wrote down the issues we need to pay close attention to. It helps me to have an overview. And I am sharing the drawing here, so people can understand why we make certain choices and why we have to be careful. Perhaps you can light a candle for Vera and the body she has to live in. It also helps to give you a visual of all the things that are going on and we may not always talk about. Images are very helpful this way.

When you look at the drawing, understand that this is part of our lives. But when you look at Vera, make sure you mainly notice her big smile.


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