Our beautiful daughter Emersyn Paige passed away from SMA Type 1 on April 7th,2009 at the age of 7 months old. This blog is dedicated to her life, legacy and spirit and our journey as a family through grief.

Monday, April 7, 2014

Five Years Ago Today ~ Footprints

I can remember five years ago today like it was yesterday. It was like my husband Jason and I had left our physical bodies to travel to the world in between heaven and earth for 22 hours as we “carried” our beautiful daughter Emersyn over to the other side. 22 hours….the same length of time as my labour with her. We were not screaming or panicking or even pleading at this point with God to make her stay like we had been in the days and months after her terminal diagnosis where I remember curling up into a ball on the floor in her room beside her crib crying, screaming and begging for this to be a bad dream. We were lucid unlike the days after her diagnosis when my mom and sister literally had to carry me with my feet limp and dragging on the ground to go back to our pediatrician’s office to talk in depth with him about Emersyn’s SMA diagnosis. We did not fall to our knees and collapse at that moment with grief like we did on the kitchen floor when we returned home from the hospital after she died. For that moment it was like Emersyn took our hands and guided us to what was important and sacred and above all of the noise and distractions of this physical world. She overrode fear, doubt and medicine as she zoned in on us as her parents, her advocates and her voice. Something bigger than us, bigger than SMA bigger than breathing machines and her collapsed lung was grounding us as every parent’s worse nightmare was coming true. Emersyn knew it was her time to go and like the brilliant, surreal, savvy and captivating little girl she was although only 7 months old she made sure we as her parents received her message, tuned into her energy and were present enough during those moments to walk with her to heaven and honour her wishes.

I look back now and cannot imagine doing this journey again without frantically screaming at the doctors in the PICU at McMaster to save her, help her, do whatever it takes to keep her here regardless of the outcome - JUST KEEP HER ALIVE DAMNIT!! But I know in my heart and in my gut that we didn’t do that not because we “gave up” or because we were in shock and all of the other cliché’s that big movie or TV series dramatize when they portray parents losing their children, but because our intense love and instincts to meet Emersyn’s needs were so extraordinarily heightened during those moments. It was like Emersyn although just a baby had taken the wheel and we were her passengers. If you were there the day she passed away then you know this sacred feeling and sense that I am talking about. It was palpable.

Every time I wonder if we should have intubated Emersyn despite her constant coding and collapsed lungs and rejection of her g-tube feeds, every time Jason and I need to talk about all of the trauma and the choices we as her parents had to make in her final days which as bereaved parents comes with the territory unfortunately, ongoing lengthy exhausting heart wrenching discussions, every time I start to feel like I have no idea how we held our daughter as she passed away in our arms for 22 hours without dying ourselves, every time I look back and think about Jason her super hero dad carrying her out of McMaster Children’s Hospital after she passed wrapped in her sheepie looking like a beautiful princess as our dear friend Nick drove our car to Oakview Funeral Home while we held her so quietly and calmly in the back seat, every time I think about how I had to eventually leave her body at the funeral home before coming back the next morning to sit with her and hold her again, every time I think about Jason and I being driven around our cemetery to choose a grave in the children’s Garden of Angels to lay her precious body to rest, when I kissed her beautiful face for the last time, every time I honestly, truly, genuinely have no idea how we were able to do any of those things. What parent could possibly get their brain around doing any of those things?? What parent could possibly function at all while losing their child?! Were we completely and totally disengaged and certifiably insane?

The only conclusion I have is this----no amount of shock or denial could prevent Jason or myself at that time from totally and completely losing it which would have been 100% undeniably understandable and beyond justified and believe me those feelings inevitably came crashing in shortly after losing our beautiful daughter. The only one explanation that could possibly make any sense is Emersyn and her powerful ability to reach us on a level that guided us through this moment in time. On this day five years ago we cried, we ached, we held our daughter peacefully and without interference from the “outside world” as she passed away. Emersyn made her mark and chose her time and made sure we heard her and honoured her chosen time of passing as painstakingly tragic as this is for me to acknowledge out loud I will acknowledge it today for her. I will acknowledge this sacred truth because I know she would want me to.

Although we were in the PICU it didn’t feel that way. All of the machines disappeared, the doctors and nurses faded away and we had the horribly painful yet beautiful and sacred honour to walk with Emersyn to heaven as Brahms lullaby played and our loving family and friends waited outside the room. We will have no greater purpose or calling in this life than to carry our child to heaven. We honored that moment for her and with her and the shattered pieces, unwavering pain, fear, guilt, anguish, loneliness, sadness, doubt, trauma and the knock you down again and again and again relentless grief of being a bereaved parent would come later when we returned from our journey of walking Emersyn to heaven. As parents we all put our children first and ourselves second even if that means spending the rest of our lives trying to cope and function without our little girl.

Five years ago today for those 22 hours on April 7th 2009 Jason and I who are not religious had the most tragic and spiritual experience any parent could imagine. We walked our little girl to heaven and as she passed we felt her soul filter through us and that is as close to God as we will ever come. Every time I feel immense anger and rage at God for taking my precious little girl I remember Emersyn is as close to God as we will ever come in this life. She is our Angel who watches over her sister Isla and baby brother Callum and if you have met these two gems you too will be certain that they were handpicked and heaven sent by their big sis. Jason and I who are not religious, but spiritual people relate to one quote that sums up the only answer we have when we think about how we could have possibly walked this journey with Emersyn five years ago today on April 7th. My dear Emersyn we did not walk with you to heaven, you carried us and we are forever grateful for you our courageous and amazing little girl. We miss you we love and we thank-you for being YOU and leaving your Footprints behind in our hearts forever.

~ Footprints ~

One night I dreamed I was walking
along the beach with the Lord.
Many scenes from my life flashed across the sky.
In each scene I noticed footprints in the sand.
Sometimes there were two sets of footprints,
other times there were one set of footprints.
This bothered me because I noticed that
during the low periods of my life, when I was
suffering from anguish, sorrow or defeat,
I could see only one set of footprints.
So I said to the Lord, "You promised me
Lord, that if I followed you,
you would walk with me always.
But I have noticed that during the most trying periods
of my life there have only been
one set of footprints in the sand.
Why, when I needed you most,
you have not been there for me?"
The Lord replied,
"The times when you have
seen only one set of footprints,
is when I carried you."