Thursday, June 14, 2018

The black and white photograph.

I have been meaning to write about many things. How the conference in DC brought back so many thoughts. You kind of stare at the demon in the face. The disease is there, in the room, palpable. and then I look at an old black and white photograph of our family members affected, and in the grain of the photograph, I see the disease seeping through, how insidious it is, how viciously cunning, it comes and permeates the entire family album.

I am back on the blog after almost 2 years of blank pages. I realize I need to write, to feel that the ball is rolling. Where should I start? Last time I wrote I mentioned the steep incline of the demands of 3rd grade, and now Zoé is entering 5th grade!
The biggest, most challenging, hurtful thing that happened is the new affliction Zoé is facing. I will call it the AA: Alopecia Aerata.

Zoé is now bald.

That's it. I said it.
No more photographs of the gorgeous brown curls, the mane cascading on her shoulders, the crown of flowers.
It is so painful to watch, so painful to accept, so dreadful because it can scar you so much more emotionally than physically.
And the stares of kids who don't understand, and the prayers of people who think she had chemo, and the indifference of peers, peers who tolerate our kids. It is not acceptance, it is tolerance.
Despite this new emotional rollercoaster, Zoé stays true to herself, holding our hands, showing us that she is still standing tall and unfazed. Or so it seems.

At school, she started mentioning the idea that her life is not worth living. She has told me numerous times; "I don't like my life, I am weird, I don't fit in." And I try to remind her that she doesn't fit in because she was born to stand out. To teach all of us a lesson so we can learn to cherish how good we have it, how we should all live life to its fullest possible core, to not let challenges beat us down, that when we are brought down by defeat, we learn to stand up again.
But the pain is still there, festering, oozing out at times, when we are caught off guard.

That's it for today. Getting back on the blog is painful.


1 comment:

Anonymous said...

Ugh, I too feel the pain of living with this horrible disease. I understand your pain. Watching my daughter struggle with everyday normal things. This is the hardest part. I never imagined this life. Sometimes I feel like no one will ever really understand but then in the next breath, I am so grateful that she is alive. Really grateful that she is able to breathe. She is my joy!