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.

Saturday, October 24, 2009


It’s been a while since I’ve written. Mostly because I am overwhelmed with all of the upsurges of emotion and thoughts that come across my mind. Just as I want to share one thought fifty more flood my mind. Too much to say not enough words and too tired and sad to really try. Trying to process the enormity of our loss is impossible. My head is trying to explain to my heart what has happened and my heart is having none of it.
One would think that with time a linear progression of healing and wellness would start to happen but as Jason and I are learning that is not the case. Grief swirls and loops and dive bombs you with uncharted territories of pain. Just when you think you are having a better day or moment the rug is pulled from beneath you.
It has been 6 ½ months since Emersyn passed away and it feels like minutes and in many ways we are “worse” now than we were then. We had the anaesthetic of shock and numbness to carry us in those blurry first few weeks and months and now we are slowing trying to understand what has happened. Was she real? Was this all a dream?
Memories, crystal clear memoires swirl around in my mind like a constant movie. Every detail as crisp and clear as if it were happening in real time. I can see myself carrying Emersyn down our stairs every morning and opening the shutters to show her the start of the day.She would listen intently as I would point out the sun or clouds or rain or whatever was happening with the weather that day. A stain glass wind chime shaped like an angel now hangs from the spot where I would pull the shutters open. As I open the shutters now the chimes ring, the angel’s sways and my heart swells as I picture my daughter and I looking out the window together. I remember watching her face as she listened very carefully to what I was telling her. I wonder if she knew that I was fighting back tears with the breaks in my voice as I was trying to hold it together as I was describing the weather beyond our shutters. Again the joy and pain side by side in those memories are so real. The exhausting pull of one emotion to the next to the next, the never ending dance with grief. Sometimes we just want a break from this dance, this pain but at the same time it can seem that it is this dance that connects us with Emersyn.

Friday, October 9, 2009


Today is our fourth wedding anniversary and Jason and I almost forgot. Not surprising for you other bereaved parents that are reading this that we are so out of touch with what day it is right now. I wish I could tell you that we are getting ready to have a relaxing Thanksgiving but we can't. We don't have the same love of traditions and special occasions that we used to. This time last year Emersyn was 3 weeks old and we were with my family having a fun Thanksgiving at my sisters totally unaware of SMA. Not trying to be negative here just really honest. I don't know if we will ever get excited about traditions and holidays again. That is ok though as I am learning that the name of the game is "survival" when you have lost your child. You do what you can to survive. So, if not celebrating these occasions is less painful then that is what we will do. We will create new traditons that are meaningful to us in a different way. Sorry to vent but feeling very low....

A Thousand Tears ~ Author Unknown

A thousand tears or more these eyes have criedand a thousand more lay in wait -I am bathed with them and yet my heart is still broken, and all that is within me aches with the loss of you, the wanting of you.
There is never a time for this that is right-never a way that can prepare the heart for this reft -you have passed through my arms too soon, like sand flowing through fingersI could not hold you here, though I would try.I know that your spirit flies freeand in the quiet depths of my heart, I can see you still in the rhythm of the waves upon the shorein the crisp fall air that fills my chest,in the iridescent gleam of each dragonfly skimming the surface between heaven and earth.~ Author Unknown