Saskatchewan·Point of View

My daughter's disease is terrible, but I refuse to hate it

Like an awful hurricane, I just stand in fear and awe and resolve to keep living through it.

I have no extra energy to give to hate

Amanda Marcotte (left) and her daughter Evie, who has Atypical Rett Syndrome. (Mike Zartler/CBC)

I refuse to hate my daughter's disease. 

She has a terrible genetic condition called Atypical Rett Syndrome, a one-letter typo in one part of her DNA. It is the cause of her autism. It messes with her brain, muscles, coordination and communication. 

The list of potential problems is long. Some kids with the disease lose the ability to walk or talk. Some can't even digest food all that well. Many lose use of their hands. We have no idea if or when my daughter will lose these abilities.

I am part of a Facebook group of Rett Syndrome families. It's overwhelming at times: the joy, the frustration, the anger, the utter exhaustion of a collective group of families. 

Some want to hate the condition. Maybe you hate cancer. Maybe you hate Alzheimer's. I cannot judge another person's reaction to a harrowing experience.

I've realized that, for me, hate is an unnatural state. 

'I cannot hate nature'

I am a character thrust into a story I wanted no part of. It is surreal to walk around like a normal person for 40 years, only to find out one cell went rogue when I was an embryo. That gene carried the Rett Syndrome mutation and peppered her mutant daughter cells throughout my body. I have been carrying a dark secret in my DNA all this time.

I am in shock. I am exhausted. My guts are knotted with worry and sometimes anger. My body is sore from the care required. I am fascinated and curious. I am wracked with both sorrow and joy. 

I have no extra energy to give to hate. 

Amanda Marcotte (left) says her daughter's Atypical Rett Syndrome affects her brain, muscles, co-ordination and communication. (Mike Zartler/CBC)

Hating Rett Syndrome is like hating nature. When you zoom in, aspects of nature seem cruel. When you zoom out and look at the whole picture, it is perfect in its imperfection. The circle, the balance is a dance that has been going on for billions of years to get to this point. 

I cannot hate nature. 

Rett Syndrome has, in some ways, ripped our lives apart.  It is a genetic storm whipping us in the wind and rain, pounding our home and threatening to blow us to smithereens. 

Still, I cannot hate it. Like an awful hurricane, I just stand in fear and awe and resolve to keep living through it. 

You don't have to hate your enemy in order to win. A fighter knows their greatest gift is to have a worthy opponent looking at them across the ring. The fight is an awful gift. It is a chance to see what you're made of. It is a chance to get bloody, to live, to lose, to keep punching and one day, maybe, to win.

'She deserves respect and dignity'

Amanda Marcotte (right) says her daughter deserves "dignity and respect." (Mike Zartler/CBC)

Dealing with Rett Syndrome is gut-wrenching, but curiosity and fascination is part of my salvation. There is an incredible story written in everyone's DNA. That we can unravel it and read a tragic page in our daughter's story is a terrible wonder. 

An even greater wonder is that now, science is allowing us to change her story. Researchers are mapping out a cure for Rett Syndrome. The condition was reversed in mice in 2008. After that major breakthrough, researchers have put a big focus on this one genetic condition. Clinical trials for a cure are starting next year. 

Even though we are looking to a cure, I want her to be accepted as she is now. There is nothing wrong with the beautiful person living inside her cherubic body. She deserves respect and dignity.

I believe science can work with nature and innovate to make the lives of our girls better. I have no doubt there will eventually be a cure. Still, we are desperate for treatments NOW. Dark doubts nearly eat me up as we wait. And wait. 

It comes down to this: I can choose hate or I can choose love. I can live in anger or I can get to work and pursue enlightenment. 

Most days it's a struggle, but it is still a beautiful life. On the good days, I put my money on hope and give the big wheel of fate a hard spin


This column is part of CBC's Opinion section. For more information about this section, please read this editor's blog and our FAQ.

About the Author

Amanda Marcotte is a former CBC journalist. She is a freelance and creative writer, active in the special needs community and mom to a very special little girl.

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