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