Emersyn's 13th Birthday Letter

Dearest Emersyn,

We simply cannot believe that you would have been 13 years old today. Very similar weather today as the day you were born. Sunshine so bright it was as if Mother Nature was just as ecstatic about this magnificent day as we were. I always thought before having kids that the "time flies by so fast" saying was a cliche until I had you and lost you. I can honestly say it feels like yesterday that I was in Oakville Trafalgar hospital beaming from ear to ear feeling like the luckiest human on earth to be your Mom. 

I remember saying to Dad in the car ride home sitting in the back seat with you "if anything happens to this beautiful baby I will not be able to cope". I had no reason to say that on the sunny peaceful drive home as 13 years ago on this day we did not know what SMA was or that you had this horrible tragic genetic disease. We had no idea what was ahead and I am so glad we had no clue what was to come as this time 13 years ago was euphoric and indescribable in terms of the joy we felt at becoming not only parents but YOUR parents. We knew you were incredibly special and sensed that you had a soul and mind much wiser and older than your newborn age. 

You are a teenager now my dear beautiful magical child. I can sort of picture you with your deep brown eyes, dark hair and magnetic beaming smile. I have often considered asking an artist to sketch for us what you might look like now as there are many times I am desperate to know. It really hit me hard getting your flowers and balloons this morning at Longo's thinking about how you should be entering a whole new amazing phase in your life as a teenager. Your Dad and I feel so sad to have missed all these years with you and talked about how awesome it would have been to see you thriving and growing up. We are picturing you in grade 8 entering high school and graduating and wondering what path and journey you would  have embarked upon and it really hurts. We are so deeply sorry that you have missed this my dear daughter. 

If only the treatments that are available today for SMA were available 12 years ago. I think about that everyday and try to feel just happy for others but I can't help but feel deep pain, anger and guilt as a parent that these treatments were not available when you were diagnosed. We carry this with us and still feel our hearts overflowing with love and joy for you. The heart is incredible to carry all of this at once. That is the thing with grief it stays deeply embedded in our souls and hearts alongside the love and pride we have as your parents. We know that you understand our grief is a lifeline to you and your legacy and story lives through both our love story for you and our grief journey.

You certainly chose your siblings well as they woke up this morning asking to go to your spot after school as this is their normal with our family. Isla and Callum don't know what it is like to have "non bereaved parents" and they like to go to the cemetery and bring something special just for you. When they were toddlers they used to run around Glen Oaks and we would have to stop them from stealing the toys and stuffed animals from other children's spots and now they go and they sit on your bench and sing to you and bring something to show their love. Both of them created little paintings early this week and added butterflies and dragonflies just for you. I had no idea where they found these supplies and I just found their creations on the kitchen counter with your name on it.

The teenage years are for self discovery and so much excitement in the years ahead. You, my beautiful girl, already knew who you were and what your purpose was before we did. Your ongoing inspiration and resiliency continues to encourage so many people to "just keep swimming" and stopping to take it all in. No matter how difficult things may seem, you ground our family and so many others with your story and your spirit which continues to surface when we need you most. Similar to "time flies by so fast" the other saying I used to deem a cliche was "life is short". This saying could not be more true and I know the teenager you would want people to be grateful for each day and embrace the moments so I will be sure to pass this message along on your birthday. You have taught us that life is hard but it is also beautiful.

Thank-you for the sun rays at Glen Oaks this morning and for reminding us that cliches are cliches for a reason. "Time flies by so fast" and "life is short" so to anyone reading this embrace the day, never give up and spread love because we need it now more than ever.

Happy 13th birthday Emersyn your legacy is still going strong and I can't wait to see what other great lessons and signs you will send the Universe.

With love beyond this physical world,   

Mom ,Dad, Isla and Callum xoxoxo 

12 Years ~ Lemonade

Today marks 12 years since you passed away Emersyn. I contemplated whether I should write on your blog that I have written on for the past 12 years. I talked to your Dad about not writing today and asked - why am I still writing 12 years later? As always he brought things into perspective for me when he said that I should only be writing here if it helps me and possibly even one other person reading this. As he said this I remembered what you have taught me which is the only way through is through.The pathway to healing is in the journey and oftentimes it may feel like we can’t do it but when we continue to try we grow. I really do find great comfort in knowing that you have helped others. So here I am 12 years later writing to you because it honours your legacy while also helping me and hopefully others to find meaning and comfort on this journey. 

What a year this has been reinventing ourselves during our global pandemic. Digging deep we have all found resiliency, sorrow and gratitude all whirled into one as we navigate this ever evolving time in history. It has been a long road and although we are almost nearing the end of the pandemic we are not there yet. On the hardest days when we miss the normalcy of visiting carefree with our loved ones I think of you and remind myself there will be nothing harder than losing you and we will all make it through this. However, making it through does not come without a greater need and awareness for true self care and compassion towards others and ourselves. I have learned that I cannot passively make it through a journey. I have learned if I do not play an active role in navigating and acknowledging where I am it is more challenging. This does not negate the struggle but it does make it lighter. As a bereaved parent I have learned that stepping aside and making space for grief has allowed me to take some time to be mindful, breathe and reflect on how far we have come and remember you. When I hold space for grief I find you there.

Losing a child and experiencing a global pandemic are very different. I do however, find myself turning to some similar coping strategies and also notice the persistence of hope appearing again and again. Gratitude and mindfulness have been two touch stones that you have given us that I continue to turn to. The power of a few deep breaths is so simple yet grounding and powerful.

You nudge us to remember that sometimes instead of doing more we can just “be”. Just be there for a moment and take some deep breaths. Gratitude and hope tend to surface in these moments. I have also noticed that hope is stubborn and will find a way to ignite itself even as a small flicker it lights the journey. I know now that grief is the other side of love and as time has passed my grief for you has become as important and treasured as my love for you. 12 years later I miss you as much as I did the day you passed away and with time even more so.

 “Grief, I’ve learned, is really just love. It’s all the love you want to give but cannot. All of the unspent love gathers up in the corners of your eyes, the lump in your throat, and in that hollow part of your chest. Grief is just love with no place to go” ~ Jamie Anderson. I have all of this love and grief and I continue to find ways ways to share it. As a family we have taken the most sour lemons as they say and tried to create lemonade that by nature will always be bittersweet yet filled with love. So to answer my question  “why am I still writing 12 years later” it is because it helps me to feel connected to you and hopefully helps someone else who may need some comfort along the way. Our lemonade isn’t perfect but it’s perfectly ours and if it helps even one person then it’s worth sharing.

We miss you to the moon and back Emersyn and we feel your absence and your presence daily. You are the hope that continues to ignite within us.

Love,

Mom, Dad, Isla and Callum xoxo