~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 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

~Where do we draw the line?~

~Tanner and I, waiting for Bennett-Chadlen, our Trisomy 13/Patau Syndrome blessing~

http://healthland.time.com/2011/01/13/can-a-new-blood-test-make-babies-with-down-syndrome-disappear/

 **Warning, this post contains sensitive content matter.**

My first post of 2011 is going to involve a controversial subject, but since this is my blog, my place to express thoughts and feelings----here goes.

"What if new tests for Down syndrome could one day mean no more affected babies are born? Is that cause to celebrate medical advances or reason to worry we are callously weeding out the less-than-perfect in our midst?"~(taken from the above link)

Where do we draw the line?  Let's not pretend that we don't understand the concept of "prevention".  This does of course require testing the pregnant woman for a 'flawed' fetus, and then reach up inside of her uterus and take away the life of the unborn baby.  Yes----this means remove the innocent life growing inside of her.

I would never choose to end the life of a fetus 'no-matter-what'----but at the same time I won't judge what someone else chooses to do.  If a woman feels comfortable with her decision ----then hey, who are we to judge?  Do what you feel necessary and I hope your choice doesn't negatively affect anyone else in your life.  I know it's a very difficult personal choice, and I mean no personal emotional suffering on anyone. 

I won't judge your choice, and I ask politely that you don't judge mine.  We all come from different walks of life, have our own burdens to bear, and depending upon where we live, our marital status, or what our income is---we just may not be able to care for a disabled child in the manner in which we wish that we could.  I will never judge anyone for what they have to do for their own personal situation. 

We are all equally entitled to our opinions, so let's exercise the freedom of expression without harm or malicious intent.  My heart is genuinely with those of you that have had to make your own heartbreaking choices.  (((HUGS)))

That said------

Is it really the woman's body, therefore it's her choice?


My personal view is to think of it as the 'unborn baby's body' and the mother is deciding this child's fate as she struggles with the implications of raising a disabled child.  This is why I would never choose when it is someone else's time to die.  It's not 'my' body, therefore it's not my life to end. 

Would I want to see someone suffer?  No, I would not, but who am I to assume what someone else's sufferance may be? 

Can we really predict what the future holds for any of us?  Is living a life with disabilities truly a state of suffering?  In some cases, it may very well be, but each case has to be examined prior to being able to make this assumption.

Does disability always equal endless pain, or illness? 

It's all a matter of personal perspective which really is unimaginable without experiencing it firsthand for yourself.

Some would say that inflicting surgery on someone is not ethical as it may cause them sufferance.  In an emergency situation, what would you do? 

Others willingly inflict surgery upon themselves in their journey towards "physical perfection", ie plastic surgery.  See, it truly is a personal choice what you are willing to put yourself through.  Childbirth was excruciating, but I chose to do it again and again.  Some may tell me I'm crazy---and yes, perhaps I am!  I made the choice to procreate and take full responsibility for my actions.  I went into motherhood knowing that sometimes a pregnancy does not result in a full-term, viable, living-breathing, perfectly, healthy child.

Some of us are born disabled.  Some of us are born 'normal' and end our lives with a disability.  Who can ever really determine how anything is going to turn out?

I know this may sound judgmental, but I'm just merely stating facts here.

This final statement says it all:     

Skotko worries that doctors won't be able to adequately counsel a pregnant woman about the reality of having a baby with Down syndrome. In 2004, a Special Olympics study found that 81% of medical students reported they get no medical education about people with intellectual disabilities.

“If that's the case and we have a new prenatal test coming around the corner,” he says, “we'll have a greater number of women being faced with a decision about which they don't have accurate and unbiased information.

“Will babies with Down syndrome slowly disappear, then babies with trisomy 18 and trisomy 13?” asks Skotko. “As a clinician, I raise it as an open question. It's a question of which forms of life are valuable.”

Should IQ really determine your value in society?

I don't know about you, but I happen to know a lot of people that just should not be allowed to breed offspring.  If we're looking into cost-effective ways of releasing the financial burden off of government programs, health insurance, and tax-payers----perhaps we should begin snuffing out the criminals that don't deserve freedom.  If they can't be trusted to walk around freely in the public, should we really pay to keep them alive?  Why is it anymore unethical to take the life of a criminal?

What about drug addicts, alcoholics, and others that continuously contribute to our already bursting at the seams population?  Should they be allowed to continue bringing life into this world when they so clearly are not capable of looking after themselves, let alone an innocent child?  Rehabilitation exists.  There are ways to end addictions and make positive life changes.  There are people in this world that make it their life's goal to help these sorts of people.....many of whom just do NOT WANT help.  Why is it unethical to sterilize these unsavoury characters?

I personally hold someone very near and dear to my heart, since early childhood when we first met.  I am so glad that his mother did not receive these prenatal tests because I just cannot bear the thought of never having him in my life.  Prenatal testing and ultrasound scans may have detected his anomalies, and physicians may have assumed a serious lack of mental development, along with the physical birth defects.  How wrong they would have been.  He's awesome just the way he is!

If it comes down to saving a buck......let's start with the undeserving amongst us and leave the babies alone.

I truly cannot imagine my life without having Bennett-Chadlen.  He may not have survived long on this Earth, but the impact of his life shall be experienced and remembered for generations to come.


Gchi-miigwech to our Creator for the gift of this precious, wee boy.  Gzaagin Nimkee xxoo

PS ~ If anyone has been unable to post their comment, it was probably MY fault.  I keep tweaking the wording as my intention is NOT TO INSULT someone that made the opposite choice that we did. I keep re-reading it and really hope that I don't cause anyone else further heartache and pain----I merely just want to state WHY SOME OF US CHOOSE LIFE! 

For me, it is not a religious matter. I am not a religious person. I am spiritual, and I believe that I have a healthy respect for life. I support pain-free, end-of-life-care for all, but will not do something to hasten the process...nor would I do anything to prolong suffering. I had to make the heartbreaking choice to take my own son off of life-support and I held him as he passed.

I love him unconditionally for all of his days, and I don't regret that choice to allow him to decide when his final time had come.

I have had personal contact with families that made heartbreaking choices for medical termination at the advice of their physicians, only to find out later that their babies may have had a chance after-all. I try to help them through their feelings to the best of my ability because their sorrow and resentment affects others around them.

A very good friend of mine lost her daughter at 6 months to SIDS, and just recently gave birth to a baby boy with Down Syndrome. He is adorable and is doing so much better developmentally than anyone would have ever predicted. He has FULL-Trisomy 21.....so the fact that he is achieving so much is just amazing! Her love for him is beyond the realm of description in mere words alone, as we all feel for our own children.

I mean really.....would any mother ever wish they'd never given birth to their child? Short of one of my children becoming a horribly vicious serial killer, I can't imagine ever having any regrets!

My eldest son was struck by a truck at the age of 4, I raised him with issues due to his permanent brain injury. The fact he survived is a miracle in itself!

My 2 other boys have a rare blood disease and Tristan had to have his spleen and gallbladder removed at the age of 5. He did suffer with painful gallbladder attacks, and his surgery was rough as he reacted poorly to the anesthetic and spent 4 days/3 nights in the ICU. I wasn't able to stay with him, but did spend the next 7 days rooming-in until he was able to go home. He was a trooper despite the 8 hr drive with all those punctures and stitches.

My 3rd son was premature, stillborn....so I really have no idea what, if anything, he felt as he passed away. Nimkee's passing wasn't as quick as we had prepared for, but he was in our arms as we loving spoke and sang to him.....his dad played his guitar---I suppose it was as peaceful as it could have been under the circumstances.

Let's not be naive. We are all going to die. When and how are always unknown. I can't feel anymore guilty about birthing Bennett-Chadlen only to watch him pass, as I do about giving birth to 5 other children that will also pass away at some time. None of us are immortal.


I believe that we all make the choices that we deem right for us.

~BREAKING THE BARRIERS~

~Infant Loss----just another 'catch phrase' perhaps?  It's easy to allow our eyes to quickly flit over the words and try not to give it another thought, for to acknowledge such a thing often conjures up images, thoughts, and feelings we'd rather not consider.

Inevitably upon meeting and getting to know others, the question of 'children' comes up?

"Do you have any children?  How many?"

{Hmm......how do I answer this one?  What do I say?  How honest should I be?  Will this person be able to handle the truth?  What might they say when I utter the words}:

"I am the proud Mother of 6 boys.  4 are still living, BUT sadly---2 of them died."

What happens next is interesting.  Quite often the response goes something like this:

.......'wow, 6 boys.  You must be a very busy Mama'.

{Uhm, excuse me......did you not hear me say "2 of them died"?  or are we going to pretend I didn't just say that?}

It's moments like this that often strikes a chord with us 'Angel Mommies' and causes many us to feel some guilt over having uttered those dreadful words that may make you squirm in discomfort.  It can often lead to this internal dialogue that skips  through our minds as we make a mental note not to mention it again in case I once again face someone that can't handle the truth, or ask themselves: 

"why would she tell me that?  Doesn't she know we don't talk about stuff like this?"

I have created a charity inspired by the Loving Memory of my own 'Angel Babies'.  I named my project after Bennett-Chadlen because he spent time in the NICU (neo-natal intensive care unit) following his birth, where he spent 8 days before he passed away in my arms.  This charity specifically deals with providing comfort and support items to other families with babies in the NICU at Sick Kids Hospital in Toronto, Ontario, Canada where he spent his entire 8 day life.

I am currently in the process of coming up with some creative ideas to spread Infant Loss Awareness, as well as hoping to inspire others to think about families like mine that have newborns fighting for their lives in NICU's around the world.  

It's not easy to put myself  'out there' and trust that others will take notice, or even care enough to donate or help out.  

I've read stories of others like myself that want to make a difference and quite often we have similar stories of experience.  Sometimes people just don't show any interest.  

It can be debilitating, and certainly soul-crushing when you share such intimate details of your life with the general public and receive very little feedback or offers of kind words, donations, or even enquire what we're up to and why?  It certainly isn't encouraging!

Why do we do this?  Why do we share our experiences, and reach out to help others??

I can certainly say without a shadow of a doubt that most of us just have this insatiable desire to help others like ourselves feel less alone in their trials and healing journeys.  We share a common-bond with these families and we wear the internal, emotional scars which we often hide so effectively so as not to discomfort others around us.  

If I can reach out and touch the lives of just one family out there, and help ease their burdens and let them know they're not alone.....then it eases my own heartache.

I know how difficult it is to share our babies with a society that isn't quite ready to "know" about Infant Loss yet.  

It is difficult to be courageous and brave, or worse yet---show vulnerability.

There is something  about birth defects and fetal anomolies that send some people into denial mode, and/or question our sanity for even giving birth to these babies at all since some of us knew prenatally what their plight in life might be.  

We just need you all to understand and respect that we love and want our babies with every fibre of our being.

With the assistance and generous donation of items, time and talent from my eldest son, his musically talented  comrades, local businesses, a local park, food vendor, volunteer bakers, a magician, the local newspaper and their writers/photographers, my friends and a handful of family members, I was able to make my 'dream' a reality!  We can't forget those of you that came out to be entertained, and so graciously donated your $ to such a worthy cause.

~Introducing Bennett opened our Benefit Concert~

So---as I sit here tonight with thoughts of WHAT, WHERE, WHEN, & HOW swirling around in this vast chamber I call my imagination---I can't help but wonder how to promote my fund-raising agenda yet once again.

While I meditate on this, images of Nimkee pop up into my head.  I can see his sweet little face, fingers and toes.  I can remember his fresh newborn baby fragrance.  I remember how good it felt to meet him and gaze into his eyes that very first time.....and how it felt to finally hold him in my arms.

While some may call me crazy for even continuing my pregnancy after his prenatal diagnosis, I have to just put those thoughts out of my mind and move forward with my goal.........

~ I hope that one day the world will be ready for us ~