~March 13th ~ TRISOMY 13 AWARENESS DAY~

~Today, myself and many other families around the world took part in remembering and honouring our Trisomy 13 angel-babies and miraculous survivors.  The 13th day of the 3rd month signifies the addition of the 3rd COPY of Chromosome 13 which contraindicates Trisomy 13.

This is a beautiful commemoration of other Trisomy 13 families that celebrate and cherish the blessings that we share. Thank you to Micayla, Angel Faith's Mommy, for putting this together and sharing it with others.

Love, Peace, & Nimkee-Blessings to all on this special day and ways xxoo

I love you Bennett-Chadlen xxoo

~The Story of Unconditional Love Through My Eyes~

"Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It's about understanding that he is exactly the person he is supposed to be. And that, if you're lucky, he just might be the teacher who turns you into the person you are supposed to be." ~The Water Giver

I came across this quote today and it brought to mind my youngest son Bennett-Chadlen.  Upon further inspection, this Mother wrote this book all about her son that nearly died in an accident and struggles with an Acquired Brain Injury.  

It is the story of a Mother's love and determination to assist her child to succeed and re-learn all the things that many of us take for granted.  Through her writings we are able to observe not only her feelings, but the healing journey and poignant look into this family's day to day experiences.

The Water Bearer is a story that I could have written myself, and maybe one day I will, as I too am the Mother of a son that has struggled through life with the residual effects of his own Traumatic Brain Injury received after being struck by a teenage driver at the age of 4.

It is a story that I became re-acquainted with when I learned of Tristan and Tanner's 'Hereditary Spherocytosis', and again when Bennett-Chadlen was diagnosed prenatally with his Trisomy 13.

The love for my son's has sustained me, and pushed me to persevere through excruciating times in our life.  There were days I felt utterly alone and overcome with emotions.  Some days I could only sit alone and cry and wonder WHY?  Why so much heartache?  Why me?  Why us?  WHY, WHY, WHY?

In the silence that followed the deep purging of fearful tears and the ever-nagging, complex questions I had for the universe......I felt renewed and gained the strength and courage necessary to take each burden and create a challenge to overcome.

I was born and blessed with a fierce determination to identify and tackle all of life's challenges to the best of my ability.  I create a list of 'things to DO', and I won't stop until I have exhausted that list.  When I cannot think of one more thing to DO, I will then take a deep breath and chalk that up to a learning experience and do my best to function and cope with the daily struggles.

I appreciate each and every day, and cherish the small things in life.  I start and end each day with an awareness of the miracles surrounding us and I'm grateful for the pure gift of life.

My boys have taught me to love deeply, unconditionally.  Because of them I strive to be a better person.  There are no words that can capture the true essence of my love and admiration for all of the special  people in my love that I hold near, and dear to my heart.

I shall leave you with these words.......

Face each challenge.  DO your best.  Be brave, courageous, and compassionate in everything you DO.

And always remember ~ There is no such thing as failure.

~photo courtesy of Heather Renee Morgan of Lifespark.ca~

~Bennett-Chadlen ~ NICU Days~

Photo and video editing at www.OneTrueMedia.com

These pics were taken during Bennett-Chadlen's stay in the NICU at The Hospital for Sick Children in Toronto, Ontario, Canada. Much love and Nimkee blessings to those who understood and accepted our unconditional love and pure desire to have Bennett-Chadlen in our lives for as long as possible.

The days and nights were long, but I just couldn't get enough of him.  I stood for hours and hours just gazing upon his beautiful face.  He had gorgeous dark, wavy hair and the silkiest baby skin imaginable.  I loved to feel the warmth of his hand in mine as he gripped onto my finger.  I will never forget the times he opened his eyes and looked at me, and stirred his arms and feet ever so slightly.  I still remember his sweet new baby fragrance, and the way he felt in my arms.

I didn't get a lot of the "firsts" that all eager parents await when their babies are born.

I didn't ever get to hear him cry.  He was 4 days old the very first time I got to kiss him, all captured by the photographer's lens.

The first time I held him was the day I rocked him to his forever sleep.


Our lives have been forever touched by this beautiful, courageous soul.

Gzaagin Nimkee, Baamaapii Gawaabmin, Until We Meet Again xxoo

~Waiting For Nimkee~

Make an on-line slide show at www.OneTrueMedia.com

~In my quest to fulfill my healing journey, I can't help but be drawn towards memories of life-altering events which had to be put-on-hold as I addressed the far more pressing matters which forced their way into my path and required my unbidden attentions.

During my 5th month of pregnancy with Bennett-Chadlen I received the heartbreaking prenatal diagnosis of Trisomy 13. As I struggled with the implications of what this could mean, I did my best to prepare for an unknown future with my darling, unborn son.

These photos depict our prenatal journey from beginning to end. I share with you such a rare glimpse into the world of the unknown that I, and too many others, have chosen to experience.

How do you prepare to say Goodbye before you've even had a chance to say Hello?

**photos courtesy of Heather Morgan of Lifespark Photography.

~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 ~

~OUR INHERIT RIGHT TO LIFE~

http://youthprotectingyouth.com/2010/10/27/echoes-of-a-lecture/

~My first article is going to be about a blog which I have just completed reading.  I know this is a controversial subject for many---but this is MY blog, so this is about MY 2 CENTS.  Here we go---

I'll just jump in with both feet and share a quote from this blog:

"I have a friend who’s second child had trisomy 13. She was traumatized by the pressure that was put upon her by her doctor and the hospital staff who urged her to have an abortion. She was given little support when she refused. My friend entrusted her child to the care of those medical practitioners, but they considered the child of no account. But the child was accepted and loved by his family from the time he was conceived until the day he died. His little heart did not have the strength to keep him alive more than a few months after his birth, but his parents’ hearts had the strength to love him through his short life."

I too was faced with this negativity and condemnation, all because I saw the value in my unborn son's life.  I had to fight for his right to live and be accepted amongst those which we were relying on to save him.  In this modern day, we have the medical technology to save lives against all odds, why not just try anything possible to allow my son to survive? 

It's a self-fulfilling prophecy to say a life is "medically futile" when you've not done anything to the contrary to try and stop this from occurring.  To me, "medically futile" means that you have tried everything medically and scientifically possible and it just didn't make a difference.  Then, and only then, can you determine medical futility in my eyes.

She goes on to say:

"So it came to my mind that it is not possible for us to judge people according to their capabilities. Often, neither we nor they will have any control over what those capabilities are. We can only judge others according to our own capability to love them. That is all. Whether man or woman, black or brown, gay or straight, intelligent or simple, born or unborn: our judgments are nothing other than our own successes or failures at love."

I believe in this so strongly, because I too had my own prenatal journey with my unborn son that was also diagnosed with Trisomy 13.   Bennett-Chadlen has been a beacon in my life, pointing me towards a greater understanding of unconditional love and complete acceptance of all humanity.  He has changed me as a person, us as a family, and opened up my heart in a way that no one has ever been able to.

I too had to fight for my son's right to life and treatment options within our medical community.  I was offered termination, and refused to even consider such a thing, for I did my own research and I saw the faces of these beautiful living children, and saw photographs and videos of these innocent children with their parents, siblings, grandparents, and family friends.  I read the stories of the families whose lives have been touched by Trisomy 13, Trisomy 18......or any chromosomal disorder---and they all had the same message:  What a blessing these children have been to their lives!

How could I not want this opportunity for myself and my own family?  I knew it wouldn't be easy to raise a developmentally challenged child, but I was ready to give it my all.  Ever since early childhood the only thing I wanted to do when I grew up was to be a full-time, hands-on Mommy.  It has been my goal to be the best, most-loving Mother that any child could ever dream of having.  I was not afraid of the commitment and time that would be required for my son.

He's my son!!!  I loved him from the moment I knew he was coming into my life, and nothing was going to change that or take it away from me.

I remember how devastated I was to find out half-way through my pregnancy that he was probably going to die from all sorts of horribly, disfiguring anomalies that sometimes come along with a Trisomy diagnosis-----but the truth is, he had none of those things.  What a miracle he was.  He was perfect all the way to his tiny extra pinky fingers and baby-toes! 

I just have to say that I pass no judgment on anyone for their own choices when faced with a similar diagnosis or birth defect.  It's a difficult choice to make either way, for facing the unknown future can be very scary and some just don't want to take the risks involved and/or fear the 'end of life care' that often comes along with this diagnosis.

I figured that if my son's life was going to end, I'd allow him and our Creator to decide the precise moment and fashion in which this would occur.  I could not choose the date or time, and left that up to the universe to decide and I'd just prepare for it the best way that I could, arming myself with faith, knowledge, courage and strength to get through it.

Why does our inherit worth in life have to revolve around how much money we earn, which occupation we have, and the material possessions which we may, or may not, possess?  I truly do not understand what a selfish and narrow-minded society that we have become.


I'll end it here, because I truly could vent all day on that topic---but I'll save that for another post, on another day.

"Don't judge me for my choices, and I won't judge you for yours."

Let's all just love and support each other unconditionally and oh, what a better world we will create for ourselves and our loved ones.

Love, Peace, & Nimkee Blessings to you all.......M

Bennett-Chadlen, forever 8 days old.  March 29--Good Friday, April 6, 2007  Rest in Peace, Sweet Nimkee, Gzaagin xxoo