~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

~Reflections of Cystic Fibrosis~

http://www.cysticfibrosis.ca/(click here for more info)

I remember a visit to Sick Kids Hospital in Toronto, Ontario back in 2004.  Tristan (5--diagnosed with Spherocytosis which is a blood disease) was there to have his spleen and gallbladder removal surgery and we had to spend 11 days on the surgical floor as he healed.

I took advantage of having someone to sit with Tristan and I took a brief jaunt to grab a coffee and a snack.  In the nurses/admission area I saw a woman holding a very sick looking little baby.  He was several months old, and had tubes attached to him.  The mother had a very sad glint in her eyes, but smiled at me and said "Hi" as I approached.

My mommy senses kicked in and I just had to take a peak at her baby boy and let her know how cute I thought he was.  I then asked her what was wrong.  She told me he was born with Cystic Fibrosis and his life expectancy was nearing its end.  My heart took a leap and I felt my eyes instantly fill with tears.  I instinctively reached out and placed my hand on her arm and looked at her and told her how sorry I was to hear that as I had also lost a baby to stillbirth and it was a pain that I could relate to.

How does a parent maintain composure as they know their child's life is ending?  At that moment in time I couldn't even conceive of experiencing and surviving such a thing.

She thanked me for listening as she shared her son's all too brief life story and explained that all they could do at that point was provide him with comfort measures and hope for the best.  The only thing which may prolong his life was if another family lost their baby and donated the necessary tiny lungs to another family in need.

I walked away with tears and just felt such an incredibly overwhelming sense of sorrow and heartache for this woman.  Thoughts of her and her baby stayed with me over those next several days, weeks, months, and even years.  Every time I hear the words 'Cystic Fibrosis', this woman and her beautiful son instantly appear in my mind.

Despite the sadness which she was experiencing, she was still able to smile and truly appreciate that I had stopped and allowed her to speak with me.  She said most people just keep on walking and go about their day.  She just needed someone to listen, show compassion and empathy, and provide that little bit of comfort in that moment.

This link gives hope for the future for many families that are struggling to survive with Cystic Fibrosis.  Click here for more personal stories of hopes, dreams, and determination.

As we are in the midst of our holiday season, please remember all those that are spending their holidays in hospitals around the world, watching their loved ones slip away. 

What can you do?  Consider the generous, self-less gift of organ donation to help another family in need.

Life----it's in you to give.

~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 ~