Since Red was born, I continue to struggle in how I see the world. The idea of a ‘cursed blessing’ has been an ongoing theme in parenting a child with a rare disease in that the absolute horror of the disease, has forced an immense amount of wisdom that otherwise, would never have been acquired.
On diagnosis day, my world turned black and white. All the colour, all the joy, was drained from life and I move(d) forward seeing things in stark contrast, in absolutes. In black and white, it becomes easier to identify actual problems. There becomes more Yeses and No’s and less Maybes:
- Unhappy with your job? Find a new one or quit.
- Marriage on the fritz? Make it work or leave.
- Friends frustrating you with menial crap? Confront them or edit them out.
- Struggling with Work-Life Balance? Family comes first, get over it.
- Complaining about being unhealthy? Make changes or shut up.
It just got easier.
Big life decisions I would normally torment over, had a clearer, instant path. It was black or it was white. In parenting this way, the entire human condition was lost — the softness, gone. Parenting a child with an uncertain future carries parents into a world of light and dark — so much weighty, colour-blinding darkness. The black is grief. It is anger. It is hopelessness. Rare Disease is the arsenic plumed sky of our everyday, with very little room for the light to seep in.
Seeing the world through a monochromatic lens is a form of survival. It’s autopilot. It’s evolution. And like all good evolutionary slaves, you either change or you die. It is not possible to live in colour when your child is in pain, when unnaturally, you may outlive them.
Then life, God damn it, not so much marches as dances on — behind your back, despite your condemnation, your grief and your pain. Life finds the weakest crack in your armored world and bleeds red — striking, earthy, vivid red. Ironically, the language of hope is in full colour, whether you are able to see it or not, it is there, patiently waiting to be absorbed into your experience as a parent.
Please know, after years of processing life in gradients of black and white, there will suddenly appears a wisp of yellow or a smear of pink across your field of vision. Incredibly, you begin to see fragments of life as it were before the diagnosis. The colours are mused into existence from the simplest of things — the speech patterns of your 4 year old girl; the way your sick child breathes in the fresh air after life inside hospital walls. Sometimes the colours are just a flash. Sometimes they cascade over your day in brighter patches. Sometimes they don’t return for weeks or even months. Occasionally they bombard the picture so vividly is makes it all a wonder.
Dearest parent of a rare child, the point here is twofold: 1) you will never see in full colour ever again. You are not meant to. Parenting a child with a rare disease dulls the platitudes of life and thank God for it, your energy is needed elsewhere. 2) When you do see in colour, man oh man, do you really see the thing life is showing you. You miss less moments. You feel it sharply and slowly. The message is never missed and as a result, the meaningfulness, the joy, the beauty of it all is felt and seen on a level that did not exist before you lived in a world when your child could die.
And so, on days burdened with deeper blacks and muddier whites, I continue to look forward to times when life grabs my face with both hands and turns me towards the beautiful, oily landscape of colour … if even for a day.