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.

Friday, June 27, 2014

Tuesday, June 17, 2014

How I remember Nalah, always attentive to her family, always a shining light, always making the best of any situation.  This smile melts my heart.
A trisomy friend, Abigail's Mom Amber Almeida, posted this quote today and I find it very fitting for our experience of parenting a trisomy child. I see this as a positive. All that is non-essential washes away, only what has true value remains.  Priorities are shifted as life is tumbled upside down. You are left creating a life that has meaning, true meaning. You are left facing, and learning to love, your true self. 

"Adversity is like a strong wind. It tears away from us all but the things that cannot be torn, so that we see ourselves as we truly are"   
Arthur Golden

For any trisomy parents, especially those carrying a child yet to be born, I want to say please have courage.  Enjoy every precious moment you have together.  Know that the experience will change you in positive ways, even though it feels as though you are being ripped apart in the arms of a storm. What remains will be worthwhile. Your experience with your child is a true gift.  Nothing can take away the love you share, not death, not anything.  A loving family is something worth the adversity. I pray you will have strength and hope. 
Nalah, for your 'Birthday'

"Nothing can dim the light 

that shines from within"

Maya Angelou

Yes, I do. Always will. With love.
Nalah's name written in the Seashore of Remembrance (Christians' Beach, Perth, Australia)  by CarlyMarie Dudley, an exceptionally talented artist who creates 'heArtwork' for bereaved families. Nalah's name means 'beloved'. We choose her name to reflect our devotion to her. I will always love the sound of her name.
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.