~Living life my way, one day at a time~

~I wear my truth like a suit of armour; I will not expose myself in the fig leaves of denial ~

~ ♥ if you only knew what's in my soul.....you'd never feel such doubt ♥ ~

~**~Welcome to My World~**~

Tuesday, March 8, 2011

~MARCH is TRISOMY, CDH, BRAIN INJURY, NUTRITION, & COLORECTAL CANCER AWARENESS MONTH~

~The month of March is significant to me for a variety of reasons.

It is the month that my father and brother have their birthdays.

It is the month for Brain Injury AwarenessCongenital Diaphragmatic Hernia Awareness, National Nutrition Month, and Colorectal Cancer Awareness Month.

The most significant of all is that March 29th, 2007 was the day that my youngest son Bennett-Chadlen Roy was born at Mt. Sinai Hospital in Toronto, Canada, and spent his entire 8 day life at Sick Kids Hospital NICU.

Bennett-Chadlen was diagnosed with Trisomy 13 halfway through my pregnancy, in my fifth month.  I had no idea what it was, and what it meant for his life.  I just knew that it had to be something bad judging by the look of horror and  pain on my midwife's face as she tried to break it to me as gently as possible.

How do you tell someone that their unborn child is affected by a rare chromosomal abnormality which often results in death prenatally or shortly following birth?

March is TRISOMY AWARENESS MONTH.  It is the one month of the year when all families of children born affected with Trisomy can join forces and inform our family and friends what Trisomy is, and what it means to us.

What began is the worst possible nightmare that I could possibly imagine, has turned into an unbelievable journey of unconditional love, pure acceptance, grief, healing, and joy.  Why joy you might ask?

My son gave me the greatest gift imaginable.  He opened me up to the most intense feeling of love that I could never imagine without experiencing it firsthand.  There are no words for the wonder and depth of admiration that I felt for this tiny, unborn son of mine.  Every single moment of time, every tiny little heartbeat......was graciously celebrated within my womb.  I spent each day rubbing him through my belly, speaking his name as I described what I could see and what "we" were doing.  I spent countless hours rocking him in front of the fire at night, in a room lit only by the flames.  I celebrated every kick and prayed for many more.  I shed tears that I thought would never stop.

Through the gift of my blessed boy, I learned to live spontaneously and squeeze every amount of happiness out of each and every day that I can breath.  I welcome life, I rejoice in the ability to experience the rain, wind, snow, and sunshine.  I hug my boys as often as possible, and never allow a day to go by without them knowing how much they are cherished and loved.  The same goes for the special people and friends in my life.

Through the internet I was able to not only learn about the survivors and families affected by Trisomy 13, but I was also able to reach out and 'meet' others in similar situations and seek comfort and solace within their words of support which they so generously gave to me when I enquired or requested it.

As I near my sweet boy's 4th Heavenly Birthday I can't help but feel sentimental and think back to those final days 4 years ago as I was waiting for him to be born.

I can't explain it, but I can show you the beautiful photos which were provided to me courtesy of Heather Renee Morgan of Lifespark Photography.

Love, Peace, & Nimkee-Blessings to all my special Trisomy families today, and always xxoo

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