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