Those Days

The days when we struggle... struggle to make sense of it all... struggle to accept that one of our precious babes is no longer with us... struggle to see the good... the positives.... the hope....

Those days when we ache... ache for the weight of our baby in our arms... ache to feel the jabbing kicks one more time... ache to smell their smell again... ache to kiss them... ache to have them back....

Those days when we fail to see light.... when the darkness seems too powerful... when the silence is too deafening....

Those days when the horrific, unthinkable memories emerge... rear it's ugly, dead baby, head... when the guilt brings you to your knees... unable to breathe... unable to think...

Those days.... those days... they have to happen....

Those days we have to bare

Those days we must face

Those days make way for the brighter days

Those days lead us to a path of gentle healing

Those days will always exist

Those days will always co-mingle with the new found joy

Those days knock you down, sometimes much further then you wish

Those days are a cruel reminder of your reality, your new normal

Those days....

Happy 8, Nicholas!

Nicholas' 8th Birthday ~ Balloon Release 2016
Thank you to all the beautiful lights that took time to celebrate Nicholas with us this afternoon.... the sun was perfect, warm and comforting and the energy was indescribable.
We are very humbled to have such wonderful, supportive and loving souls in our lives ~ those that wrap their friendship around our entire family <3 span="">
Love you all.

Strength and my "Why"

I have been led on a different path the past several months.  A more positive path.  A more productive path.  A more energetic path.  A path that finally feels like 'home'.

My "why" on this new journey has transformed along the way.  It has reshaped many beliefs and  molded new ones.  I have learned so much about myself and continue to strive to live out of my comfort zone.

In analyzing my "why" and the hills and valley's along the way I continue to come back to this; 

I often don't feel like I was very 'strong' when faced with the devastation of Nicholas' death.  I felt numb mostly.  Certainly not strong.  When I look back at the raw days, months and years after saying hello and goodbye in one breath, to one of my own... I didn't feel strong.  I felt broken.  For a long, long time. 

In the journey of grieving Nicholas I feel like I have cultivated strength.  Strength from the many friends and family who have supported us 100% along the way.  Strength from the perfect strangers around the world who remember our boy when they look at their baby's angel wings.  Strength from Nicholas' legacy.....  the strength and perseverance of that little baby boy could not be matched. 



My ‘Why’ ~ Story of Change

In May of 2015 my life and the life of my family was enhanced on so many levels. We decided to embrace a new, simple lifestyle in an effort to put more pure, whole food nutrition into our bodies. The results of adding a variety of over 30 additional fruits, vegetables, grains and berries into our daily routine has been incredible. Not only are we feeling exuberant amounts of energy to get through our normally crazy days, but we are losing excess weight, gaining muscle, experiencing smooth, vibrant skin, etc. etc.…. Most importantly, we are focused on maintaining a lifestyle filled with joy, fun, love, health and fitness!

I immediately fell head over heels with the way we were feeling and started sharing our experience with the people I love and care about most. This is when my ‘why’ transformed. My family is my ‘why’, yes. However, in this journey I have come to realize that my ‘why’ is so much more, so much deeper than I had ever dreamed. This opportunity has allowed me to get my ‘why’ back. I have found me again.

Just over 7 years ago I lost a big part of me when our son, Nicholas, died. For years I have gone through the motions, enjoyed my family and living children, absolutely, but something was always missing… I often felt like I was in a fog, always carried a tremendous amount of guilt and grief. Reaching out, comforting others in similar situations and creating a legacy through Nicholas’ Touch has helped to soothe my soul, but this recent journey into a healthier me/us has helped me to rise up on some many levels.

It has allowed me the confidence to believe in myself again. It has allowed me to strength and the will power to reach for the stars. It has allowed me the chance to touch people’s lives in such a profound way. It has allowed me the opportunity to be a part of such a strong, supportive and loving community of inspiring people. The energy that fills the room when we are all together is phenomenal and infectious. I am so very grateful that this new road found me several months ago….

Onward and upward!

Feeling empowered.

Missing you today....

One of those days.

Those days that you feel like the breath is being sucked out of your soul....

I miss you everyday, son, but today I feel something looming over my heart.

Mommy grief.

Grief that thickens and threatens and intimidates.

Then I look at the date.

January 7.

Funny how the heart just 'feels' those markers differently.

xx

This time of year....

I have been asked to speak to some health professionals at our local hospital as a piece of their perinatal bereavement training.

Here is my speech.

Love you, Nicholas.

Hospital Talk - 2015

Good Afternoon, Everyone and welcome,

I am honoured to be here and I would like to thank Kemayla for inviting me to share our story with all of you today.  Thank you to all of you as well.  I am sure you have had a long, emotionally draining day.  I appreciate your time and your willingness to engage and learn about a subject that is often thought of as taboo or too difficult to deal with in a compassionate way.

As this date approached I felt a little uneasy.  For obvious reasons, of course, but the more I examined my heightened anxiety I realized the date.

7 years ago tomorrow.  I was 35 weeks pregnant with our third son.

October 28, 2008

The day our world stopped. The day we were told that part of our baby boy's brain had not formed. The day we had to make the most unimaginable decision of our lives.

This time of year marks the most tortures, unforgiving emotional ride as we re- live the days leading up to meeting our baby boy.    The grief thickens.  It’s deep.  It’s raw.  We are desperate for just one more glimpse.  We ache for one more touch.   We imagine his face at each family gathering.  We feel him in our souls.

Our journey through grief began 7 years ago when our youngest son, Nicholas passed away .

This is our story…..

Seven years  ago my husband and I received the most devastating, unbearable and confusing news any parent can hear.  Our third son, the baby we had planned.  The baby we grew with, the baby we loved… was in a desperately grave condition.  We were forced to face any parents worst torture ~ the unfathomable reality that our beloved child was unable to survive outside of the womb.  The fact that our son’s ultimate fate was death – even before he drew his first breath.

My pregnancy was eventful.   At almost 20 weeks I was rushed to the hospital and had emergency surgery to remove an 8 cm cyst that had twisted my ovary.  Life-saving surgery for both myself and baby.  Several doctor’s, nurses and technicians assured us that our baby boy was just fine.  Safe, healthy and totally oblivious to the pain mommy was experiencing.  I remember constantly thanking God for that.  I gladly took every ounce of pain just knowing that our baby was thriving.  As much as his strong kicks hurt my incisions, the tears I shed were those of gratitude.  I remember every kick …. Every hiccup and I rejoiced in the fact that we had survived such a life threatening event.

I was released from the hospital and went home to rest.  Quite a few weeks later, during a routine scan, my OB requested I be seen by a high risk doctor to rule out any possible problems with our baby’s ventricles in the brain.  My OB was fairly certain everything was fine, but with everything we went through to get there, he wanted to be sure.  I wasn’t worried.  I hardly thought about it.  Just an over cautious doctor, which I was grateful for.

In just a few short weeks our lives changed from anxiously expecting another beautiful, healthy son very shortly to living a nightmare in which we would never wake from.

The high risk doctor confirmed that our baby’s ventricles were indeed enlarged.  Grossly enlarged….  She immediately sent us to Mt. Sinai hospital where we endured many questions, tests and long, agonizing waits. 

I don’t remember much about that day, especially the latter half.  I remember being escorted into an office.  There were pictures of African animals everywhere…. A trip the owner of the office had taken, no doubt.  Pictures of smiling children, happy families… seemingly taunting us.  I remember my eyes being glazed over like they have never been before.  I remember holding my husband’s hand so tightly.. for fear I would melt to the floor.  We sat and we listened through the sobs to the doctors talking about our baby.  Our perfect little boy.  The baby who we were told was perfectly fine just a week ago.  We listened as they told us that his sweet little brain had ceased to develop or it had recessed after my attack, my surgery.  All that continued to run through my head was that I deprived my own child the very oxygen and blood necessary to grow….  I failed him.  I failed my husband, I failed his brothers who were so desperately awaiting his arrival.  I failed his grandparents…his Aunts, his Uncles….. I failed myself.

A week later, at 35 weeks pregnant, I was induced and our beautiful baby boy was born….. sound asleep.  I will always remember that overwhelming feeling, just moments after I felt him leave my body, of hoping beyond hope for a cry… that somehow the doctor’s were wrong… that he fought through… I prayed for some kind of miracle as the primal screams of desperation escaped me.

We were able to spend so much precious, memorable time with our boy.  We named him Nicholas Warren and he was perfect.  He’s still as perfect as ever.  He has such a strong presence in our lives.  Nicholas is loved, remembered and honoured every single day in our home.

Fast forward to today.  I wish I could say that this all makes sense now.  That there is some greater purpose of forever walking this road of missing our baby boy.  I’m not ready to say that.  I’ll never be ready to say that.  Today, none of what happened makes any sense to me.  I will never accept that our baby had to die for a reason or that God has another plan for him.  I don’t believe that.  I certainly don’t embrace it.    What I do know is that somewhere along my journey I made a promise to myself, my family and especially to Nicholas.  I promised that the anguish that resides in my heart over losing him will not define me, but rather, the gratitude and distinct honour of being chosen to be his mommy will soar above all else.  

As a baby loss mom the message I try to convey today to others facing this devastating tragedy is that after surviving the unimaginable, there is hope.  There are lighter and brighter days down the road.   No matter how far along we are in this journey we must remember to be gentle on ourselves.  Be patient.  Be kind.  Remember.  Love and be loved.  The sadness, the desperation, the anger… these feelings are all a part of the process.  Let yourself go to those dark places, but please, remember the light too.  As difficult as it is to accept that time marches on while our world has seemingly come to a crashing halt…. time is our ally.  Time softens the pain.  Time allows us to remember the good and not always the bad.

I know that I will always physically ache for Nicholas.   For his body in my body, his soul in my soul.   A mother’s love is endless. 

 No one else will ever know the strength of my love for you, buddy.   After all, you're the only one who knows what my heart sounds like from the inside. ...

As much as I long to have Nicholas here, playing among his older brothers and protecting his baby sister, I feel like the“ache” has transformed.  I have learned to allow joy and grief to cohabitate in my heart.  It never ceases to amaze me how such definitive opposites can co-mingle so gracefully.

A very old friend once said to me; “I am not a religious person, however I have always believed in Guardian Angels.  How bittersweet that you got to meet yours”…  what a truly beautiful perspective.  It’s an image that speaks to my heart.

I can’t say that my personal journey has always been graceful or kind.  And I can most definitely say that it hasn’t been easy.  Some days are just plain hard, cruel and messy, but others are full of hope, joy and an abundance of love.  I suppose it will always be that way. One feeling trying to overpower the other.  Two completely different sets of emotions delicately balancing in my heart.

Four years we had a very special vision to celebrate and honour Nicholas on his birthday.  Our family, along with some very generous friends and family, have created some special Hospital Memory/Comfort Boxes for the labour and delivery ward at Southlake Regional Health Center. Although my feelings are mixed (I wish these types of boxes weren’t needed at all) the donation of the Comfort Boxes has become a tradition on Nicholas’ birthday… as well as if there is a need.  It is my understanding and my experience that not too much exists in terms of tangible care and support when you are forced to leave the hospital with empty arms.

It is our hope to provide items in these packages to newly bereaved parents that may help in memorializing their babies.   When parents are forced to face the unimaginable; saying goodbye to their children, tangible things such as pictures and hand/footprints aren’t often thought about until it’s too late.   Our goal is to offer comforting options... options that are not typically thought of in the fresh stages of grief.  

I was told years ago that one of the first boxes had to be gifted…. What an intrinsically bittersweet moment that was.  I only hope that the family knows how genuinely and incredibly sorry I am that they now find themselves on this journey… one where I have walked and wept.  I desire that knowing others have walked through this anguish gives them hope… that they know that they are not alone in what often feels like a very lonely journey.  I hope that they can feel my arms around them as I weep with them.

We have gone from deep, deep despair and sadness to feeling a sense of strength for enduring such heartache. We have gone from utter hopelessness to hopefulness in bringing a new baby home to our family. We have gone from missing our baby boy so intensely in the ravages of new grief to remembering him, talking about him and including him in our family every chance we get.

The past seven years have been intense, unpredictable and full of unimaginable grief, but they have also been filled with hope, inspiration and an incredible amount of healing.   Although it is painful to not have Nicholas here with us, his spirit and his legacy have infused our family with indomitable strength and immeasurable love over the past 7 years.   We remember him often, we honour him daily, we love him unconditionally.  He is forever a part of our hearts and our souls.

I believe that our loved ones are never too far away.  They are in the whispers of the wind, the first spring bloom of the season… the fluffy, white snowflakes that melt on our nose…they are in the crimson sunsets and marshmallow clouds…they are flying on butterfly wings and they are in the ladybug that lands and decides to stay for a while.  They with us always… holding our hearts tight and offering sweet comfort as we remember and pay tribute….  They are in the light of our flames  as we light our candles… they are in the tears that fall and they are in the embraces we receive.  Where ever you choose to “see” your Angel is the perfect spot… embrace those moments… there are always more to come.

I can only imagine that when faced with such shock and sadness ,your job, as health professionals, becomes a very difficult one.  One that most do not want to face.  One that most feel incredibly uncomfortable with.  I hope that today has been gentle on all of you.  I hope today’s training and our sharing has provided some encouragement of how to approach such profound loss… it is never easy, nor should it be.  Being in the positions that you are in , you already have a special and compassionate heart….  Trust that heart.  Feel it.  Connect.  Be present.  Love.

“Bereaved parents never forget the understanding, respect, and genuine warmth they received from caregivers, which can become as lasting and important as any other memories of their lost pregnancy or their baby’s brief life.”

This is also, of course, true for the flip side.  I can honestly say that we experienced both extremes.  From inconsiderate platitudes, accusations and utter lack of compassion to above and beyond care for our baby and our hearts…

I will forever be grateful for both perspectives.  They allow me to appreciate the human spirit in a beautiful light…

Thank you for taking the time to share in Nicholas’ story.

You are apprecitated.

You Are My Greatest Adventure

I have been horrible.

I yearn to write, yet the words seem stuck.  I feel when I write, yet I am unsure of what I feel.  I have to write, yet I don't make the time....

Guilty, guilty, guilty.  Seems to be the common theme.

The holidays were heavy.  I felt like a gloomy cloud hung over my head everywhere I went... like the weight of my heart would collapse at any given moment.  The reality of heightened grief over the holidays threatened to cave me...to knot my soul and destroy my spirit.

Sometimes it sneaks up on you.  The uncontrollable emotion of hopelessness.  Other times it lingers and slowly breaks you down no matter how hard you try to conquer it.  This year I felt defeated.  Like my positive attitude wasn't enough.  The powerful foe had gotten under my skin.  Invaded my thoughts and had just plain gotten me down.

Through the years I have learned that grief.... this tumultuous journey we are on doesn't always make sense.  In fact, it almost never makes sense.  The feelings in my heart and head are contradicting ones.  There are times when I feel part of a tug of war... joyous and blessed in one moment yet anxious and beaten down the next.

I picked up a sign the other day... a rustic, barn board type of sign.  It says "you are my greatest adventure".  I loved it as soon as I saw it.  It drew me in and my mind began to race at all of the possible meanings this sign has in my life.  Life is most definitely an adventure.  A ride full of ups and downs, sharp turns, steep hills and stormy seas.  It is also full of joy, love, kindness and many, many blessings.  Our middle son, Kyle, read the sign when I brought it home and asked me what it meant.  I told him that 'you' are my greatest adventure.  Daddy, Evan, Kyle, Nicholas and Madison are my greatest adventure in this life... my greatest loves and my greatest adventure. And then the question; "what about 'Blossom', is she not part of your adventure?"  Be still my heart.  From our fabulous, insightful, gentle Kyle....

I felt a pang and the guilt and reality of it all quickly set in again... my sweet boy is right.  'Blossom' is a part of our adventure.  She gently came into our lives and then left in an unspoken moment...

Our adventure is ever changing.  An adventure full of glorious things and an adventure full of horrendous things...  whatever my adventure is it is certainly worth fighting for.

October 28, 2008 - The Beginning of the End ~ His Journey's Just Begun

 Today ~ October 29, 2014

These next 2 weeks mark the most torturess, unforgiving emotional ride....  This time of year is hard.  We love you sweet boy.  Today, always and forever.

His Journey's Just Begun

Don't think of him as gone away~
his journey's just begun,
life holds so many facets~
this earth is only one.

Just think of him as resting
from the sorrows and the tears
in a place of warmth and comfort
where there are no days and years.

Think how he must be wishing
that we could know today
how nothing but our sadness
can really pass away.

And think of him as living
in the hearts of those he touched...
for nothing loved is ever lost~
and he was loved so much.

~E. Brenneman


October 28, 2008

The day our world stopped. The day we were told that part of our baby boy's brain had not formed. The day we had to make the most unimaginable decision of our lives.

We were scheduled into the high risk pregnancy hospital that afternoon for a number of tests because an ultrasound had shown that the ventricles in our baby's head were larger than normal. My husband and I made the 1/2 hour drive into Toronto and, to be honest, our spirits were hopeful. We certainly had a million questions, but how bad could it be right? I was 33 weeks and had several ultrasounds throughout the pregnancy - every single one was "fine" - until the last one. How could something so catastrophic not been seen earlier??

When we got to the clinic I had blood taken, then we had the amnio... and then the "detailed ultrasound" performed by one of the head doctors. He studied our baby for a long, long time (all the while making small talk). I remember him telling us about his daughter and a big house they had bought not too far from where we lived...I look back now and wonder how in the world he could talk so casually when he could clearly see the trouble our baby was in.

The doctor was called away for what felt like hours and during that time my husband and I tried to remain calm... we didn't know anything for sure at this point. My husband looked at the transcript from the previous ultrasound and figured things were fairly positive (he has some training in the medical field and can read the jargon). When the doctor finally returned he probed my belly again and asked if he and the doctor we had been seeing (who was now in the room) could speak with each other freely. Sure. I didn't understand a single thing they were saying, but something deep in my soul knew that none of it was good. I kept looking at my husband for some kind of reassurance.... nothing. He just kept shaking his head and looking really concerned. When my husband looks concerned I know there's trouble.

The doctors finished up and we were sent to wait in the waiting room... for what we now know was the worst news of our life.

We were taken into the genetic councilor's office and shut the door. Oh God...

"Part of the baby's brain has not formed at all" the words went through me like a sword. "There was some kind of insult to the baby", probably during or after my emergency surgery at 20 weeks, "There is a high chance that the baby will not make it through labour or for very long once he is born" .... my vision is blurry now, I am staring blankly at who knows what, I don't hear them anymore. "If the baby is born alive we cannot guarantee what quality of life he will have... with half the brain missing...." "Everyone has different views and ideas of what quality of life is....there are options for you." Options, are you serious??!!!

After a while we were left alone in that office.... to scream, to sob, to shake uncontrollably. Our first and foremost thought was that we did not want our precious baby boy to suffer. We did not want him to be born gasping for breath, struggling to stay alive. We did not want him on life support and we did not want our beautiful boy to be attached to tubes and needles. We also felt like we had to think about our two boys at home... there were 5 people to think about. I will never forget my husband saying that. I don't remember too much, but that I remember. It struck a chord and resonated in my breaking heart.

The decision to let him go, without a doubt, was the most heart-wrenching, soul-searing, horrendous decision we have had to ever, ever had to make, but I truly believe we made it out of love. I have to believe that we spared him the pain, the suffering that he would have inevitably endured, regardless of the outcome.

I pleaded with the doctors not to send me home that night.... I really didn't know how to face anyone. But there are policies, of course. We were sent home to writhe in our pain... to start grieving our little boy who was still actively kicking and pushing his mommy's belly.

We waited 4 days to get an MRI scheduled. The MRI was to 110% confirm the findings (which we were all for).

That was Friday, October 31, 2008 - Halloween Day. And that is for another post.

My heart and soul ache for you Nicholas..... we love you more every day... xo