These past few months I have been in a tremendous amount of physical and emotional pain. Two new diagnoses have been added to the repertoire of all that is wrong with my immune system; neither one with easy solutions. Dot has gone through a mild version of hell as well this winter, resulting, amongst other things, in the skin literally falling off her foot from of an infection.

Although I am familiar with pain in a multitude of forms, I am not now nor have I ever been a fan. I am also not a great fan of change. Regardless I think it’s fair to say things have reached a tipping point and change seems inevitable. We have a vast spectrum of issues to tackle in the coming months, some a lot more important than others. I wanted to find a way to deal with each issue slightly differently than I had before, with a bit less stress. If I could throw in a bit more maturity, realism and acceptance to the mix then I’d be happy.

I was so anxious to start somewhere, change anything, do something that I ended up painting my bedroom with Dot. I took down the wallpaper inch by inch with a scraper while Dot giggled as she sprayed me instead of the underlay with warm water. We washed the wall, rinsing off years of grime and I spent two nights meticulously putting filler in each little crevice. The room was wounded; I counted 568 nail-sized holes on its four walls. We spent a day priming the wall. Dot had her own brush and pot of paint and she spent hours drawing ”octopuses” under the window. We took two baths a day just to get the paint and dust off our skin. I spent an entire night painting the room its final colour, a very pale wedgewood blue, so Dot could see it finished when she woke up. We spent the morning in bed under a duvet fort, looking at the painted walls and giggling at each other, with Dot exclaiming “we are painters mummy” as often as she could.

The process of painting a room may sound trivial in the midst of incurable diagnoses, an already chronically ill child that more likely than not also has a chronic immune disease, work chaos, enlarged organs and blood clots. For us though, the process was a silent acknowledgement of love and a tangible display of consciously deciding to choose life and joy.


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