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.





















































Tuesday, April 7, 2026

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



Tuesday, September 16, 2025

17

 Emersyn is 17 years old today. I remember thinking the same thing on the day she was born and on the day she died - the world needs to stop and honour our beautiful girl. The world has continued at a rapid rate since her passing in 2009 and the cliche of “times flies” is all the more real with each passing birthday, angel date or regular day when the waves and truth of grief show up. When I was at her spot this morning where she was laid to rest, I asked for something out loud that I needed help with. A few minutes later I got in my car to leave the cemetery and the phone rang and my request had come true. There it was - the knowing and trust that she will find me on these days because I am counting on her to lift the veil and almost touch my shoulder so I don’t slide too far down in my grief. I needed that message this morning and in true first child form she found me clear as a bell with her assurance and help. Would I have asked for this help had I not created space for mourning today…..I don’t think she would have found me in the same way. 

Everywhere we look in our new world the pace is fast. In a world of chat GBT and the rapid speed at which we can receive support and answers, I find the art of thoughtfulness and expression has been impacted. I feel that I have permission to talk about Emersyn on her birthday or angel date. I need the openness to talk about her everyday as naturally and unedited as I would my living children. Only another bereaved parent truly understands the depth of this need. It feels like a deep well that overflows in a bereaved parents heart that we try to carry and not spill over until we feel safe to share. We need space to share where others can truly allow us to talk about our kids. That is how we parent our kids who have died, we share not only who they were but what we imagined for them and how we need to honour them. Grief is the other side of love; it must be as talked about and normalized in the same way.


I talk about Emersyn to help others who are struggling. This past summer we had an unexpected loss of Freddie, the beautiful heart horse that Isla was part boarding and deeply connected with. Isla and I were there when he passed unexpectedly and I remember saying to Isla and others there that day, when we lost Emersyn the most sacred thing we could do was be there for her during her passing. This helped Isla as she was able to lean into this during a traumatic event and I saw Emersyn’s wisdom and impact helping in this moment which is what she does best. I was not able to return to the barn for a month as it was really hard to see Isla, Freddie and the other people who loved him go through that terrible loss. I returned this past weekend to watch Isla ride and not one but two gorgeous butterflies swooped and soared over me. This was Emersyn letting us know that Freddie was with her and she was taking good care of him on the other side. I needed that and so did Isla. Isla your resiliency is remarkable.


And now I will speak directly to you Emersyn……I often think - why do really awful things continue to happen to the same people. How much suffering can one human take? I know I will never have answers in this lifetime but I can only imagine it has to do with guiding others. You have taught us to carry the unmeasurable pain of losing a child while also enduring hardships along the journey while reminding us how to love ourselves and each other. You have taught me to speak out using compassion and kindness and always imagine ways to make things better for others or help ease suffering. Life moves fast and you remind me that I don’t have to and I can set the pace and in doing so thoughtfully choose where I pour my heart work. Carrying pain and expressing it wholeheartedly while using that pain to help others heal is the real teaching. 


I hope you and Freddie are flying high knowing you continue to heal others and teach about the importance of slowing down for one another in this fast life. You remind me to pace each day as it is not promised to any of us. On the days sweet Freddie cheered me up as I looked in his knowing eyes I always felt closer to you. I know you are taking care of each other and jumping big on your 17th birthday in heaven. I will never need AI to capture your legacy. I promise to forever speak from my heart and hopefully even help one person carry their grief, hardship or pain a little lighter.


Happy Birthday Emersyn we love and treasure you always,

Mom


P.S. Thanks for the butterfly you sent to Isla this week that landed right on her hand. You pick your moments and we see you perfectly.