A butterfly lights beside us like a sunbeam.

For a brief moment it's glory and beauty belong to our world.

But then it flies on again, and though we wish it could have stayed, we feel so lucky just to have seen it.

Tuesday, June 17, 2014

It has been over two years since I have written here. My heart has been too sad. Full of love, but sad.  Sad because my daughter was denied essential life-saving treatment the day she died. Slow code. Fake resuscitation. Horror for a parent. Fatal for a child. Nalah suffered discrimination because of her genetic condition. Doctors made value judgments about her quality of life. Those that knew Nalah knew that she was pure light, a gentle soul, full of mischief, curiosity, patience, love, and intensely bonded with her family. Nalah was simply an exceptional child. I have no regrets for choosing life for Nalah, for advocating for a 'chance at life' for her in this harsh medical system she was born into. My only regret is the discrimination she faced from others, and the hardships that brought.

I remember Nalah every day. My life is enriched by her memory. Our family is a 'family of four, embodied in three'.  Nalah will always be our baby girl, our little munchkin, our favourite star in the sky. I trust Heaven is being far more kind to Nalah than this earth every could. That is my only comfort. That and knowing that Nalah is surrounded by loved ones and other special trisomy children in her new home. Children with exceptional parents who were loved unconditionally both before, during, after birth. Regardless of outcome.

I wish I had more fight in me to battle the discrimination children like Nalah face. It has been over three years since Nalah said goodbye. She was a wise child, an old soul. I read recently that souls choose their lifetimes, and the roles they will play in their 'soul group'. Nalah choose a very tough role. She taught a role that would enrich others, while negatively impacting herself. Nalah choose to teach us about love, unconditional love, and to find a strength that we did not know we had. Having Nalah changed my life and I would not want to go back to how things were before her.

Nalah, this would be your birthday. We celebrated every "17th' of every month, as it meant another month with you. Today, we are having the usual party. Pizza, cupcakes, and a special place to you at the table. You got so bored with birthdays, I remember you rolling your eyes after the 20th party. Well, we still will celebrate you and we will never forget.

We love you Nalah. Always will. 

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