Happy 18th Birthday Emersyn

Dearest Emersyn,

Today, you are officially an adult. You are eighteen years old. I can't believe it.

I am sure this would have been your first year at university, wowing the world with your ideas, inspiration, and your unique self. You are doing that in your own way, from the other side, and your impact continues to be powerful and lasting. I was telling Callum yesterday that I parent 3 of you all in different ways but with the same love. 

I felt angry today driving to buy your flowers on the way to the cemetery. Angry that for all these years this is how we spend your birthday and no one but other bereaved parents can understand this feeling. It’s like feeling trapped but even if I could get out it won’t change the fact that you have missed all of these years. How do I explain to non bereaved parents that I asked AI to share with me what you would look like at 18? I can’t explain it as this journey can only be lived to understand how much it transforms you.

What will happen when we are no longer here to carry on your legacy? Where will I find you?

That is the question I asked my dear lifelong childhood best friend, Deanna, while standing in my kitchen on a winter night in 2009. We were talking quietly on the phone while you slept nearby. I remember desperately asking her, What will I do when she is gone? Where will I find her? I have learned the answer over these years.

I find you in special people and in the many places and moments that make life feel authentic and real. In the beautiful sunrise yesterday morning, there you were. In the empathy and compassion of your siblings, there you are. In the deep ache that allows me to connect with the pain of others, there you appear bringing grace and encouragement to every circumstance. In the way your sister Isla connects with horses instantly I feel your presence.

I am lucky to have the best of the best people who are my family and friends that help us to carry your legacy. Deanna is one of those people where I find you, Emersyn.

With Deanna’s blessing, I want to share a little about her today, on your 18th birthday, September 16th the day you brought your light to Earth at around 2:00pm on a Tuesday afternoon. The afternoon I felt invincible and certain I had just done the greatest thing I will ever do and it was.

Deanna and I have grown up together since we were nine years old. We went to the same elementary school and high school, and then geography took us in different directions for a few years but we always knew we were only a phone call away. Through our twenties and all the years since, we have always remained connected by heart and there when we needed one another most. The kind of friend who you may not talk to for ages but you pick up right where you left off no judgement just understanding, love and laughter lots of laughter! The kind of friend where words are not needed.

Deanna was there in the weeks after you were born, before any of us knew that you had SMA, back when life still felt more predictable and innocent. She was also one of the cherished people who was there after you passed away sitting with us in that quiet hospital room, comforting us and honouring you. At your funeral, over Easter weekend in April of 2009, I asked Deanna to bring some kind of bunny for us to bury with you. She arrived with seven bunnies, a variety of chocolate, stuffed, and ceramic all because she wanted to make absolutely sure you had just the right one.

That is Deanna. All heart and loyal to the end.

When I see a sign from you, Emersyn, Deanna is one of the people I tell. She knew you. She believes that your spirit and your impact continue to touch and help people every single day.

This summer, Deanna received a diagnosis of breast cancer. It was a terrible shock for her, her family, and all of us who love her. And somehow, Emersyn, you continue to give strength in these difficult times. Deanna draws resilience from your story and finds comfort in believing that you are watching over her and walking beside her through this which I know is true. In the moments I can’t always be there, there you are.

Her resilience and strength throughout this journey have shone through. A village of loved ones are supporting Deanna just as she has helped so many people over the years through the most challenging times. She has made authentic connections throughout her life and touched so many hearts along the way and when I look at Deanna, I see you, Emersyn.

I see the kindness.
I see the humour

I see the compassion

I see the strength
I see the joy alongside the pain.

I see how much she loves her kids the same way I love you guys.

And once again, I find myself thinking about that question I asked Deanna on that winter night in 2009, standing in my kitchen and speaking in a whisper while you slept nearby.

Where will I find you?

I find you over and over again.

I find you in life.
I find you in the people I love.
I find you in the people whose lives you have touched.

And Deanna is one of those people.

She carries a piece of you. She sees you. She remembers you. Deanna knows that today my heart is half here on earth and half in heaven searching for you. As she faces this difficult chapter she still makes space and time for you. I see you in her light and tenacity and I know I will find you right where she is. Deanna makes people feel like she gets it like she is almost living it herself, this is a rare gift.

So today, on your 18th birthday, I am thinking about how much you have taught us here on earth and how that light continues to find its way into our lives during our darkest times.

Happy 18th birthday, Emersyn.

I will never stop trying to find you and I know I will keep finding you in the people I love most like Deanna. Thank-you Auntie Deanna for being one of Emersyn's people and for being you. Emersyn is right beside you on this difficult journey.

Love you for eternity Emersyn, thank-you for watching over the people I love most.

Love,

Mom

Grief lives here..

Dear Emersyn,

I can talk to you anytime, and if I ask, you will appear in my dreams. That is what I have been told about losing you. I have not seen you in my dreams since you were alive, and I am not sure why. Today marks 17 years since you passed away on a Tuesday that had morning snow in April just like we did today. I have lived since then, but so differently than I would have if you were here. It is hard to believe you would be turning 18 this year. I can’t let grief take  me under, because I have your incredible siblings here who need me. But I also need to connect with you as a parent’s love does not stop when our children die.

Life has been too busy with work, kids’ sports, and balancing a few too many commitments. I have not made time for grief in a while. One might think that after 17 years, the need to make time for grief is not as essential as it was on April 7th 2009, and in those early days, weeks, months, and years we endured right after you passed. What I have learned is that today, perhaps even more than in those early times, it is essential that I make time for grief. To let her in, to welcome her, to offer her kindness, and listen to what she has to say. She sits with me, and we let out a heavy sigh that lingers, as if it might clear the air. I try to name what I’m feeling at that moment. Oftentimes, I can’t, so I describe it instead, heavy like a weighted blanket on my body. An overwhelming sense of disbelief washes over me when I try to process that you were here for eight months, and now you are gone.

My eyes and heart feel heavy; the fatigue of grief is real. The anger and frustration that have been bubbling for weeks have their roots right here. You would think I would remember that the anticipation and buildup to this day can be harder than the day itself. These wise words were once shared with me by another bereaved parent, and I know them well. I even share them with others when needed, yet my body resets and follows the same pattern every year, the buildup, the day itself, and the recovery.

This is also true for holidays, for your birthday, and for so many moments in between. It requires a great deal of emotional and physical energy. When I ignore it, as I have been lately, my sleep is disrupted. I become more irritable. I feel stuck and weighed down. So I let her in. I give her warmth and ask her to sit with me for a while, knowing that grief lives here too, this is her home. She was born out of love and is the lifeline between me and you, Emersyn. I ran from her for a long time, seeking help from anyone I thought could provide relief from this unimaginable pain. I don’t know exactly when I befriended her, but over time, trust was built, and grief became an aching, essential part of my heart.

Steven Kalas wrote an analogy of grief that I connected to right away in the early years of grief. Here are some of his words that I carry with me…

“Your grief is awful, but it is also holy. And somewhere inside you, you know that. The goal is not to get over it. The goal is to get on with it’.

You and grief together can begin to compose hope.

You don’t get over it. Getting over it is an inappropriate goal. An unreasonable hope. The loss of a child changes you. It changes your marriage. It changes the way birds sing. It changes the way the sun rises and sets. You are forever different.

You don’t want to get over it. Don’t act surprised. As awful a burden as grief is, you know intuitively that it matters, that it is profoundly important to be grieving. Your grief plays a crucial part in staying connected to your child’s life. To give up your grief would mean losing your child yet again. If I had the power to take your grief away, you’d fight me to keep it. Your grief is awful, but it is also holy. And somewhere inside you, you know that.

The goal is not to get over it. The goal is to get on with it.

Profound grief is like being in a stage play wherein suddenly the stagehands push a huge grand piano into the middle of the set. The piano paralyzes the play. It dominates the stage. No matter where you move, it impedes your sight lines, your blocking, your ability to interact with the other players. You keep banging into it,surprised each time that it’s still there. It takes all your concentration to work around it, this at a time when you have little ability or desire to concentrate on anything.

The piano changes everything. The entire play must be rewritten around it. But over time the piano is pushed to stage left. Then to upper stage left. You are the playwright, and slowly, surely, you begin to find the impetus and wherewithal to stop reacting to the intrusive piano. Instead, you engage it. Instead of writing every scene around the piano, you begin to write the piano into each scene, into the story of your life.

You learn to play that piano. You’re surprised to find that you want to play, that it’s meaningful, even peaceful to play it. At first your songs are filled with pain, bitterness, even despair. But later you find your songs contain beauty, peace, a greater capacity for love and compassion. You and grief — together — begin to compose hope. Who’da thought?

Your grief becomes an intimate treasure, though the spaces between the grief lengthen. You no longer need to play the piano every day, or even every month. But later, when you’re 84, staring out your kitchen window on a random Tuesday morning, you welcome the sigh, the tears, the wistful pain that moves through your heart and reminds you that your child’s life mattered.

You wipe the dust off the piano and sit down to play”.

Today I invited grief back home. She never really left, I was just too busy to share space with her. For me there is not a day that my grief is not with me. So I sit down, invite her in, and together we play the piano for you, Emersyn, composing a song of love, hope, and sacredness that binds us together, always.

I love you and miss you so much Emersyn.

Love,

Mom