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.

Saturday, September 16, 2017

Butterflies Fly Away ~ Happy 9th Birthday Sweet Emersyn

Today is Emersyn’s 9th birthday and my sweet girl would be in Grade 4 and no doubt just as funny and adventurous and unique as Isla and Callum. 9 years ago today after a long labour I felt like I could do anything because I had her. I remember having so much confidence that I actually slept in the hospital that night and sent Jason home while Emersyn and I slept soundly until morning. No one else was in our room and the maternity ward was slow that night and my daughter and I slept peacefully. I have never slept as soundly as I did that night and I wonder now if that was meant to happen as I would need my rest for what was to come. I may engage in life more now and carry my grief more privately but it is always there in all of it’s intensity a living breathing life line to Emersyn. Today I exhale and take my armour off and let myself fall as today I cannot carry the backpack of grief and juggle all the things that life involves not today. Today I am all about you Emerysn.

I woke up this morning had a shower got dressed went downstairs and let it hit me in all it’s impact. Isla and Callum got up and Jay made our usual Saturday morning pancakes while Isla wrapped her existing toys and put them in gift bags to take to the cemetery. Callum said he wanted to give you 8 cars how cute is he? We then went to the store and Isla came in with me to ask for balloons to be blown up and when the cashier asked who they were for Isla replied “my sister she’s 9 and she is in heaven and we are visiting her today so tie them tight”. Just as I was about to give my rehearsed response which I am more prepared for now 8 years in Isla chimes in and is sharing her sister’s legacy and I stood in Longo’s and I cried. I could barely speak as Isla smiled at the helium balloons being blown up and was in awe as she watched them float up to the moon as she says. The cashier stopped and looked at me and Isla differently and said “I think our next ribbon should be a gold one just for your sister she sounds pretty special”. I could tell our cashier wasn’t having a good day but as soon as Isla shared that these balloons were for her sister’s birthday in heaven it was like a light went on and Emersyn’s gifts were opened right in front of us. Isla was sharing her sister's gifts on her birthday.

It is what I like to believe is perspective, my little 9 year old Angel gives me this daily when I think things are stressful or too difficult I remember what she went through and how short her life was and I remind myself of perspective. I remember what we as a family have gone through and I think although my reserves are nearly tapped out I am able to carry on because nothing could be as bad as losing my daughter. I saw this woman who I just met stop and look at us and literally change as her eyes welled up and a smile came across her face as she chose the gold ribbon for the last balloon. She suddenly stood taller and more present and said “let me cut your flowers down to the right size for the cemetery I will be right back”. I could feel her sense of desire to help us as she cut them down to just the right size for the vase. She then found a bag for us to carry the balloons so they wouldn't fly away in the car and helped us carry everything and wrapped the flowers even though she knew where we were taking them. I felt her watching us as we went back to the car to meet Callum and Jason and I thanked Emersyn for reminding all of us that it is the little things we can do for each other that can make all the difference. I was also given perspective and felt gratitude to the kind stranger who carefully prepared her balloons and flowers for us today.

In a world that is crazy, hectic, media overloaded and constantly changing Emersyn is my mindfulness. She is my gentle compass guiding me back to what is right, what is kind and what really matters. She is the root of my empathy and the multiple lenses I look through when I consider different perspectives. She is also the root of my advocacy in my career that I love as a Special Education Teacher and as an advocate for my own children. Emersyn you are my lighthouse in the storm and my gold ribbon that ties me together when I feel weak.

Sometimes I can’t quite process that the greatest loss has happened to us because it is just too big to wrap my head and heart around. I think consciously and subconsciously I am always trying to integrate losing Emersyn into everything I do to continue surviving her death. I take her story and my love for her and I weave it into as many people, stories, songs, butterflies and special moments as I can. I make meaning not of her death because that is unexplainable but of her life and her gifts. Emersyn’s gifts are something I talked about in the eulogy I wrote for her funeral yet as I wrote those words I was not sure how her gifts would find me in such devastating pain.

Emersyn you are 9 today and it should be us showering you with presents and cake and fun crazy birthday celebrations with your friends but instead you keep giving to us. I hope I get it right as I reflect on your gifts so far as I feel you want us all to be reminded today of hope, bravery, compassion, gratitude, empathy, resilience, authenticity, humility, perspective and most of all love. I feared that my pain would dominate everything but I have learned that my pain does not need stifled or removed as it can live and breathe right next to my love for you. As long as my love is there my pain can exist and be channeled into helping others and myself to grow.

And Isla and Callum also wanted me to add that they noticed as we were driving out of the cemetery today the song Party in the USA came on and the line “the butterflies fly away” played on the radio just as a Monarch Butterfly flew over our car! Leave it to my 3 to throw in some pop wisdom for us today ;) I hope as you fly away Emersyn you know that we see your gifts and we hope we received them right my little/big girl.

I hope our gift to you today is continuing to challenge ourselves to do better and  be better because we are all a work in progress.

Happy birthday my sweet, funny, charismatic beautiful Emersyn you are my heart and I hope I am your hands here on earth.


Mommy, Daddy, Isla and Callum xoxoxoxoxo

Friday, April 7, 2017

8 Years an Angel

8 years ago today on April 7th 2009 our Emersyn passed away in our arms at McMaster Children’s hospital while snow fell in slow motion outside our window of the ICU. Jason and I laid on either side of her for two days and watched her chest rise and fall and listened to her heart beating. From the point we knew she was passing we did not want machines telling us her vitals because we already knew. We were her parents and we knew every move and sound she made, that is what you do when you are the parents of a child who is medically fragile and who had very specialized needs. That is what you do when you know your child better than you know yourself.  

The hospital room was dimly lit and warm and the mood had shifted from crisis management to palliative care about 24 hours before she left us. My 7 month old daughter had the heart and soul of a warrior she was on her journey and this was her choosing her time and to this day I do not know how Jason and I did it but we journeyed as far as she would allow us to go with her. Our family and friends took their post outside the ICU and held space for us.  

We knew when Emersyn was about to take her last breath and we felt her physical self leave us as we both announced at the same time around 2:00pm “she’s gone”. The snow that day in April continued to fall just like today and we lay there with Emersyn and slowly started to come back to earth without her physical self and felt like aliens in the unfamiliar shoes of bereaved parents. This was so much to take in so we didn’t take it in shock kicked in and anesthetized us until we were able to begin to process very small bits over time and in many ways we still are processing and always will be.

We were starting over from the ground up and looking back now I know she carried us up and down those ditches, valleys and flatlands of grief. She strapped us to her wings and carried us when she could but as we know now grief is the leader and we couldn’t go around it, we couldn’t go over it we had to go through it and let those waves hit us. We respect grief now she is an old friend and life line to our girl and we know that grief doesn’t care about timing it comes when it chooses and teaches us every day. As we sit here today and look at the journey we know our grief is not in hindsight. It is a part of us as much as Emersyn is part of us and it is important to us that people get that and are ok with it. We are very lucky to have really good people in our lives who do get that and we are grateful.  

I have been incredibly blessed to be able to reflect my grief and healing in the work I do every day. After teaching Grade 1 for many years I am very grateful to have the opportunity this year to be one of our Special Education Resource Teachers at my school supporting our students, teachers and families. I feel extremely connected to Emersyn in my new role as I always think about the supports she would have needed if she had survived with SMA and gone to school. My brilliant little girl would have needed really amazing people who truly got her and her needs and I also know as long as those supports were there she would have loved school. Emersyn would have roped everyone in with her captivating eyes and her zest for life and fun! She would have loved all of the advancements in technology as she would have had some amazing opportunities to communicate in new ways and share those ideas that I know she would have been so full of. I will forever consider myself a parent of a child with special needs and I hold that title with great pride. To me being a parent of a child with special needs means you know your child better than anyone, you are a fierce advocate and you develop a keen sense for good people very quickly. I have been so lucky to have been surrounded on my journey with good people and I know Emersyn has had a hand in guiding us towards these kind and wise souls.

Emersyn continues to shape who I am and what I stand for both personally and professionally. Emersyn will always inspire Isla and Callum who have empathy and compassion on a level that comes through in the most beautiful ways. Just the other day Callum retired his favourite duck as he said it was time for it to go to heaven and keep Emersyn company. Isla said I looked sad today and needed one of her stuffed animals because I miss Emersyn. I think making meaning from suffering is what keeps us going and gives us purpose. We all have stories and that is what brings us together as humans and makes us feel connected. Emersyn’s story is far from over as every time I work with a student I think about her and what I would have wanted for my child. My hope is that Emersyn knows that every time we strive to do better and grow she is our driving force and fuel and our reminder to continue to seek the road less travelled.

When people share with me that Emersyn has inspired them and her story gives them strength and hope that is the greatest gift I could ever receive. Thank-you beautiful Emersyn for continuing to teach us that we are all a work in progress and our grief can also be our greatest source of love and growth.Thank-you to my beautiful little girl who did not get to live long in this physical world but continues to find creative and brilliant ways to reach us on a level that far surpasses what we can see or touch because it can only be felt in our hearts. I promise you Emersyn that I will continue to spread that feeling because your love is too good to tuck away it needs to spill over and shine just like you.

We love you my dear child and I will always see you in the eyes of the students I work with and in the good in the people I meet and care about so much.

Fly free and spread your love you are missed and loved beyond measure,

Mommy, Daddy, Isla and Callum xoxoxoxoxoxo