Monday, October 26, 2015

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.

3 comments:

Lindsay said...

This is beautiful. Perfect even. Thank you for sharing this. You are making a beautiful difference in honor of Nicholas. Sweet boy....

Jus and Kat said...

This was beautifully written and so inspirational ... " I have learned to allow joy and grief to cohabitate in my heart."

Thanks for this Lea!

Patricia Saul said...

Thank you. My son, Nicholas was born at six months and stayed with us for 4 beautiful days. I see dragonflies everywhere all of the time.

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