~MARCH is TRISOMY 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 Awareness,  Congenital 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

Make video montages at www.OneTrueMedia.com

~CLAIRE'S HOPE~

http://www.claireshope.com/

~Claire's Hope is a beautiful website created in Loving Memory of a little girl named Claire Hope Cox.  Like Bennett-Chadlen (prenatally diagnosed with Trisomy 13), Claire was born with a rare chromosomal syndrome called Trisomy 18, or Edward's Syndrome.  Despite her poor prenatal diagnosis, her parents welcomed her into their waiting arms, and continue to feel blessed for the gift that Claire is in their lives.

Claire's family has created not only this beautiful website, but also a real place where families can go to remember and memorialize the lives of their own babies who left this world all too soon.

Claire's Hope, and Hope's Corner, are located in Mobile, Alabama, in the halls of a 3-story building which used to house an abortion clinic.

(taken from the website)

-"On November 28, 2008, Hope’s Corner was opened to the public as a memorial, a museum, a tribute and a place where women, couples and families affected by crisis pregnancies can get the information they need to honor the sanctity of human life."

Like me, Claire's family does not judge or scorn a parent's decisions regarding the lives of their unborn children.  We all have heartbreaking choices to make, and everyone is welcome to pay tribute to their loved ones amongst the halls of Hope's Corner---whether it be on the "Wall of Forgiveness", the "Children's Garden", or "The Virtual Wall".

"Claire’s Hope is your sanctuary and you are always welcome and will always be uplifted here."

~JOSIAH'S JOURNEY~

~As many of you know, my son Bennett-Chadlen was born with a rare chromosomal abnormality called Trisomy 13, aka Patau Syndrome. The following is a fundraising effort in Memory of Josiah, another Trisomy ^Angel^. Please click the following link, and learn more about this wonderful family, and their beautiful son Josiah. Help them, to help others. Families like theirs, and mine, will be eternally grateful for your thoughtful donations.

With Love, Peace, & Nimkee blessings.....Gchi-miigwech ~ Big Thanks ♥

http://www.josiahsjourney.ca/

http://www.prayingforjosiah.blogspot.com/

~The following is taken from Josiah's website:

"Welcome to Josiah's Journey!

Josiah's Journey is a charitable fundraiser in memory of Josiah Morash who died on July 28th from a rare genetic disorder known asTrisomy 13 or Patau's syndrome.

Proceeds from Josiah's Journey support the Neonatal Intensive Care Unit at St. Joseph's Hospital in London, Ontario.

As a result of this diagnosis, Josiah was given only a 3% chance of surviving the pregnancy. Beating incredible odds, Josiah grew close to full term and was born alive. Due to the many complications of Trisomy 13, Josiah also died this very same day - his birth day.

Josiah's life was the Greatest Blessing to our family. He brought more love, joy and faith to our lives than we could have ever imagined. Please join us as we continue with Josiah's legacy - a precious little red-headed boy whose spirit was filled with courage. Let us always remember Josiah as we reach out to help other families in need of neonatal intensive care."

~**~FACES OF TRISOMY~**~

~FACES OF TRISOMY~(click here for link to website)

~As we near the end of MARCH, which is also TRISOMY AWARENESS MONTH, I'd like to share this beautiful video montage with you. Please watch it with compassion in your hearts, and know the unconditional love that we Trisomy parents feel for our children.

Bennett-Chadlen was born with Trisomy 13. His 3rd birthday is approaching in a week's time, March 29. My heart is heavy with the pain of his loss, but these images give me HOPE that we are entering into a world where these children will be widely accepted, and parents will be understood. We cherished the gift, the blessing, that our beloved children are to us. Nimkee's spirit is alive and well in our home, and in our hearts forever.

~Much Love, Peace, & Nimkee blessings to you and yours......Melissa xxoo

Here is what the photographer shared on the Hope for Trisomy 13 & 18 site:

"Faces Of Trisomy by Jude Wolpert

March is Trisomy Awareness month. I photographed this series of portraits at the SOFT (Support for Families with Trisomy 18, 13 and Related Disorders) conference in Roanoke, Virginia during July 2009. I am trying to raise awareness that while only 10% of these kids survive their first year the ones that do live a rich life. Expectant parents are often told that Trisomy is incompatible with life and I am trying to share their unique beauty through these digital images. These children and young adults do not pose for photographs but can be captured being themselves, living in the moment. Most are non-verbal so I see it as an honor to help tell their stories visually."

~TRISOMY 13 AWARENESS VIDEO~

~THIS is a beautiful video created by a friend and fellow Trisomy 13 Mommy---Micayla, Mommy to Angel Faith. Please watch and share with others, so that everyone can see the true face of Trisomy 13.

Sadly, many never hear of Trisomy 13, aka Patau Syndrome, until their own prenatal diagnosis. Trisomy and nature do not discriminate. There is currently no way to prevent this, nor is there a cure. Quite often, Trisomy 13 is not diagnosed prenatally until half-way through the pregnancy---as is what occurred with my own prenatal journey with Bennett-Chadlen.

We formed a bond with our sweet boy and then the devastating prognosis was delivered. I have to say that despite the fact that I knew his time here on Earth may be short, I looked forward to every prenatal visit. I cherish the memory of each peak we had by ultra-sound, and I remember the sound of his heart beating inside of me. The birth of my son Nimkee was one of the most amazing days of my life.

As you will see in this video montage, many families love and treasure the time that they have received with their little ones.

Many children are continuing to thrive, and you may see some of their beautiful, smiling faces here!

Much Love, Peace, & Nimkee blessings to all, especially our special Trisomy families....XXOO

http://www.youtube.com/watch?v=OE0IVJjPidM

~Meet Nathan~A Trisomy 13 Survivor

~Nathan is a beautiful little boy, living with Trisomy 13.  He is living proof that this chromosomal condition isn't always "incompatible with life".  

Please watch this video, and for more information, check out Nathan's web album at this url:  http://www.livingwithtrisomy13.org/album53.htm

~Thank you Amanda, for allowing me to share your gorgeous wee boy, and his loving, blessed family with so many.  XXOO

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Now I Lay Me Down To Sleep

If your unborn child has been diagnosed with a poor prenatal diagnosis, please consider seeking out this organization. I was blessed to have met a wonderful woman who did some prenatal photos for me, as well as during Bennett-Chadlen's time in the NICU.

I also had the opportunity to have a photographer come to the NICU on the day that Bennett-Chadlen grew his tiny, perfect wings. He stayed for hours..........

These photos are so very precious to me for so many reasons. These photographers captured the very essence of my emotions at that place in time.

These photos will provide me with a lifetime of irreplaceable memories......

My photos may be viewed here on this page......to the left.

The following video is a sampling of photographs of other precious babies whose lives were touched by Trisomy, just as Bennett-Chadlen was.