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, September 16, 2019

Happy 11th Birthday Emersyn

September 16th 2008 is your day Emersyn. Today represents the sacred day you were born and a day I will never forget. I can recall every detail of that day and the transformation that I felt meeting you for the first time. I remember my 22 hour labour and look back on this as the most sacred experience of my life. You would be 11 years old today and in Grade 6 and no doubt an amazing girl with a magnetic spirit and dreams bigger than I could fathom. Some may wonder why 11 years later I still write to you on your birthday but you know it is a not a choice it is a fundamental need I have to connect with you and share your legacy.

At every birthday celebration I go to I think of how you only had one when you were 5 months old when we decided to have a big party for you. After you were diagnosed with SMA at 4 months old we did not know how long we would have with you. We marked each day and month with mindful gratitude amidst the sorrow of your diagnosis. I felt like I could conquer anything the day you were born and I remember feeling like the rest of me was born that day along with you. Bursting with pride and hope we brought you home our perfect  baby girl and we could not wait for our friends and family to meet this incredible little human and the best part of ourselves. Just like that feeling of wanting to share you with everyone then I still have that desire to share you with the world so here I am on your birthday like I do each year sharing you.

I share you through the lessons you continue to teach me and I reflect on the way I have changed. At 42 I feel very different than I did at 31 but what has not changed is the love and empathy you rooted deep within me. When I find myself getting caught up in the day to day schedule I stop, close my eyes take a deep breath and ground myself with you. In a time of technology overload, social media saturation and less face to face time with each other I think about those 7 months with you. We were tuned into you and our family and friends on a sacred level of connection that we will never forget.

Humans are meant to be together and you taught us that ten fold. We may travel the world in search of new places, things to see and people to meet but nothing will compare to being tucked away at home with you watching the snow fall and feeling your warm snuggles and chubby hands holding ours. You grounded us in a love and mindfulness that I strive to feel at that level again in a world where we need it more now than ever.

May your life, legacy and spirit continue to be that grounding force for us and others who may need it in their journey. You taught us that we didn't have to be anywhere special to feel love, connection and peace we only had to be together. Today as we always do Isla, Callum, Daddy and I will be together and remember the amazing day you were born. We still cannot believe you were born 11 years ago as it felt like yesterday I was calling daddy to tell him I was in labour and beyond excited to meet you. The first granddaughter in our family was arriving and everyone was elated. As long as I live your birthday will continue to be sacred and I hope that your message of grounding love, togetherness and peace helps anyone who might need it. So today we will close our eyes, take a deep breath and think of your life and spirit to help us to cope, navigate and appreciate this extraordinary journey we are all on together.

Just after I wrote this message to you this morning I received an email from a family thanking us for the sheepskin we donate to newly diagnosed families through Families of SMA Canada care packages. The family shared their gratitude and said that their little boy is feeling comfortable and cozy on his new sheepskin and is also enjoying holding your card with your picture on it. It is no coincidence that I opened the email from this special family today. Emersyn you continue to amaze us with your gifts that continue to help others and us when we need it most. Thank-you to this special family and their sweet boy for reaching out to us and sharing your beautiful pictures we are so grateful. Thank-you for letting us share your pictures on Emersyn's special day it means the world to us.

This song is for you Emersyn on your 11th birthday we love you and miss you always. Thank-you to all of our family and friends who continue to help us carry Emersyn's legacy. We are eternally grateful for all of your love and support.

Mom, Dad,Isla and Callum xoxoxoxoxo

Sunday, April 7, 2019

10 Years an Angel - Carry You

10 years is a significant number. It is a milestone number usually recognized in celebration of something special. I wish this 10th milestone was a celebration but today it’s a reflection and a time of grief and remembrance for our family. Ten Christmas mornings, 10 Easter’s, 10 birthdays, 10 first days of school, 10 Halloween's, and here we are 10 years to the day of your passing my dear Emersyn. I have always been honest in sharing our journey and in that honesty is healing which I hope somehow helps others in their struggles.

Oh the journey we have traveled over these 10 years since we walked out of McMaster Children’s hospital and held you all the way to the funeral home. In the days leading up to your funeral I remember Auntie Erin and Auntie Catherine shopping at a boutique downtown Oakville to select outfits for us to dress you in. I remember the store owner closing the boutique so they could assist in finding you something special. In the end we chose the soft pj’s and laid the dresses over you as dresses never were your thing although you loved options..just like your Mama. I remember sitting in the Glen Oaks office trying to pick your spot, stone and bench wondering if every flickering light was you. I never realized the two angels engraved on your bench on either side of your name were a boy and a girl Angel until after I had Isla and Callum. Everything is 20/20 in hindsight as I look back on the journey over the past 10 years.

Our souls are ancient and our hearts are both heavy and full. We have danced with grief for 10 years and it is a part of our family that needs space, time and attention. Both love and grief live in our home. If it were not for grief we would not have healing so we have let grief in and made a place for this misunderstood human entity. I am proud of us for carrying our grief and I am so grateful to our family and friends for carrying it alongside us. It takes a village to raise a child and it has taken a village to support us in losing you. We understand that we have a lifetime of navigating and integrating our loss by making room for grief care. We will forever balance tending to grief while not letting it harden us because when that happens you can’t reach us. The softness in the sorrow is you and we know for certain the other side of love is grief so we go where it takes us just as we always have for the past 10 years.

This weekend grief has taken us away for the first time on your Angel Date. We have never been able to be away on this day before as we needed to be home in retreat.This year we wanted to come to Gravenhurst Muskoka to go back again to the Children’s Memorial Gazebo that we magically came across in our early grief before your brother and sister were born. To do this we carved out time away from the usual weekend commitments. When we came home from work each day this past week we stayed up late to do the housework, laundry, my course work and groceries so we could have the gift of time together this weekend.

We know ten years in that we need time as a family without the regular weekend checklist that we always tend to. Road Trips and driving have always been helpful for us over the years since losing you. Road trips allow us to sit quietly, listen to music, take in the scenery and just be with our thoughts. On our way up we stopped at Glen Oaks and cleaned up from the long winter. Ten years has taught us to always bring water and gardening supplies to clean your bench and stone properly. This year was the first time that bagpipes played in the background as we cleaned and decorated your spot while another family began their grief journey. Bagpipes are special to us and are a tribute to your Scottish roots, they are something that a milestone of 10 years deserves. Thank-you for that moment Emersyn we felt you with us.

We are here now in Gravenhurst at the same hotel near the spot your Dad and I found when we were in a very low point of hope after you passed. This was a turning point in our journey as we knew for sure you were always with us. Discovering the Children’s Memorial was one of the most sacred experiences for us next to the day you and your siblings were born. This morning we will go up to the gazebo overlooking the water that is just beginning to thaw. We will journey up the little trail with Isla and Callum and we will find you there. The certainty of you we have after ten years is something we did not have when we first lost you. Was that butterfly or bird you? Was that song at just the right time you or was I making something out of nothing? We no longer ask others or ourselves if it is you as we simply know. We know how to be parents between worlds now and we know how to carry you. It is a skill I wish we did not have but out of necessity we have developed the ability to carry you here, there and everywhere we go in everything we do. A few years ago I posted this poem by E.E. Cummings as it captures our journey on this earth without you physically with us.

“I carry your heart with me (I carry it in my heart) I am never without it
(anywhere I go you go,my dear; and whatever is done by only me is your doing,my darling)
I fear no fate (for you are my fate,my sweet) I want no world (for beautiful you are my world,my true)
and it's you are whatever a moon has always meant and whatever a sun will always sing is you
here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud and the sky of the sky of a tree called life; which grows
higher than the soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart
I carry your heart (I carry it in my heart)”.

I cannot change that you passed my sweet girl and each time I try it creates an indescribable level of pain. Ten years in I know this Emersyn. So instead I will share gratitude for your teachings over the past 10 years that have shaped the person I am….my flaws, wounds and all. I have so much gratitude for the support of our family, friends and people we continue to meet who remember and carry you with us. The community who carried us on the day of your diagnosis, throughout your life on earth and on the day of your passing on April 7th 2009 and everyday since then. To the hundreds of souls who carried us the day of your funeral we will never forget your heartfelt support. To the love we feel today sent to us from so many lives you have touched Emersyn. We have deep gratitude for our village we know you feel the same. You have carried all of us when we need you and you remind us that what matters most is caring for each other. When we care for each other we are doing our best work.

Thank-you Emersyn for inspiring us to reach deep and do our best even when we feel at our lowest. I hope everyone who has been touched by your life and our journey over the past 10 years feels our gratitude for helping to carry your heart. We will carry you to the Gazebo this morning where something greater will carry all of us just like the day you passed. A sacred moment where earth will meet heaven and our hearts will intertwine and we will be carried together by love.

Ten years later Emersyn I carry you here, I carry you there and I always will because you are my heart. Ten years later we do not move on from your passing we carry on with you in our hearts until we meet again.

We played this song at your funeral and the significance is felt so strongly today beautiful girl ~


Love you always and forever,

Mommy, Daddy, Isla and Callum xoxoxoxoxo