Dead - Simple

I would like to take you along on our journey with Justin. A journey that as far as we are concerned may last for a very long time....

Today is Fat Tuesday so we are eating pancakes. Justin sits next to me and tugs on my sleeve. He always eats his hot meal before we go to the table, but stays with us as we eat. Pieces of pancake disappear into his mouth and he can't get enough. His toes are covered in chocolate sauce and his fingers are shiny with grease. A warm feeling of happiness runs through me as I watch this little guy feast so deliciously. Enjoy it, Justin, and please do so for a very long time......

This afternoon, I received a call from our Just's childcare centre. Normally they always email, so there must have been something special this time. Several times his behaviour was so disturbing that this could not be done via email. Now, we have seen quite a few white coats come by since October last year and we are still in the middle of the investigations and then I have to say that I am not waiting for these kinds of messages. The feeling of being itching somewhere but not knowing where to scratch then comes pretty close.

Justin is sitting in his chair. It is not yet bedtime but he is restless again. I turn on his electric blanket and take him into the lift. His face pulls a weird grimace like only he can. He doesn't feel well and I resolve to email his daycare later and go upstairs a bit more often tonight. In the bathroom, he walks into the shower corner and immediately grabs the thermostatic tap. A small smile emerges. He knows that when he turns the tap there will be a waterfall of rain coming down. Lovely child. I'm glad he can still go crazy.

Because craziness, there has been too much of that lately. In the time of three quarters, three children have gone to heaven. Two Cornelia-boys plus a Cornellia-girl with the same gene change as our Justin. There is talk of this in our family, we cannot escape it because I cannot hold back my tears. This is hugely confronting, if only because outwardly our children look so much alike. Can be siblings.

Dying is open for discussion with us. Where another family might talk about gym class or the new dog, we talk about Justin dying. Just dying. We waited for the children to ask questions themselves and chose to be honest and clear. Even with a loving distraction. Because really, our children are far too young to be faced with this. And so am I. And so are we. Because deep down, I am also incredibly scared sometimes.

But fortunately, we also discuss the carnival day at school and that grandiose football match. The eldest's good grade and the ‘what are we going to do next holiday’ We really are a nice family. Still, when I put Justin in his cot tonight and he enthusiastically greets his warm safety, tucks him in and gives him an extra cuddle, I think, stay with us; little child, for as long as possible. We want to keep you with us for a very, very, very long time!