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.





















































Sunday, February 20, 2011

Home Strength

Jason and I are currently coping with the impossible task of packing up Emersyn’s room today for the move on Tuesday. It has been perfectly ‘untouched’ since she passed away 22 months ago. Every item has a memory, a smell, a meaning and is a “linking object” to our daughter. We cannot stop the tears from flowing, giant, sobbing, broken heart tears that are unstoppable and necessary to get through this. What things of hers can we share with her baby sister when she arrives? What things do we put in her hope chest? What things do we display out of reach of small hands in the future? What things are just too painful to even look at? Give her things away...NEVER not for us. The fuzzy brown and pink blanket she was wrapped in after she died, the last sleeper she wore when daddy gave her CPR, her modified teething stick that our OT made for us that she loved so much, her magical Daphne bath seat that allowed her to enjoy her baths and move her legs - can we use that again for her sister or will that be too hard? The bag we brought home from the hospital for the last time with all of her things in it that we have been unable to even look at since she has passed. Every single item in her beautiful room requires careful thought and consideration as to what we should do with them. For each precious item we ask ourselves what would Emersyn want us to do with these treasures? Making decisions for our child is a guessing game and one we HOPE we are doing right.

We know that these are just “things” we are talking about and if Emersyn were here alive, healthy and well we would not even think twice about packing up her things for our move, throwing some old things away, donating them or sharing and passing down her things to her sister but since she has passed no decision is easy anymore. Those who have lost a child can understand the monumental emotional, spiritual and physically exhausting task of changing, packing, moving or altering their child’s room after they have passed away. Every day I go into Emersyn’s room I look at it with a heavy contrast of emotions. I feel great memories as well as painful sorrow that she is no longer here, frustration at all of the things she loved that she can no longer enjoy and play with and most of all heart breaking love because this is where I rocked her to sleep in my arms, where she enjoyed her beloved bath time every night with daddy and rubbed mommies back when she was first born while breast feeding in the cozy glider chair. This is where I sat when I was six months pregnant like I am now and ‘waited’ for her every night while I rubbed my belly and dreamed of how our life with her would be. Our daughter is our world and we want to do right by her and for her. We know Emersyn has such a tremendous giving spirit and so much wisdom and love and would ultimately want us to do two things: firstly for mommy and daddy to do things that bring us comfort while coping here on this earth without her and secondly but also just as equally important, to share her life including some of her special things with her baby sister who we know she already knows and loves so much.

As we pack up today we are not moving on, we are not moving forward I hate those words they are filled with expectations, pressure and a false sense of the journey of grief that there is some kind of imaginary beginning and end to the story of our child passing away. We are “moving” with Emersyn’s spirit and heart coming with us and her baby sister growing in utero and all of our things that we know are only ‘objects’ but if they contain even a trace of Emersyn’s soft black hair, a smell of her warm baby hugs or a memory that we cherish deeply then we must care for them and honour them as these things are sacred to us as her parents. They help us to tell her story and connect with her spirit.

The symbols and ways we express love especially for our child who has passed come through so many different ways. Music, nature, people and words are some of the ways that we connect with our Emersyn every day. To quote some beautiful words that express our love for Emersyn and why everything that we do for her is so important in both her life and her passing I would like to share a few lines from our new favourite book “Thisbe’s Promise” (thank-you Victoria for this gift). “You are my wind and I am your light as a feather. You are my cocoon and I am your crawling clinging feet. You are my sky and I am your wings. You are my water and I am your gills. You are my land and I am your strong whistling legs. You are my tree and I am your long bending trunk. You are my ocean and I am your tail. And I was born with love in my heart because I was promised you”. The other half of our hearts has been taken and we just don’t work the same without you Emersyn but we are trying.

Emersyn we know your spirit will come with us to our new home and that is why we bought it. You guided us there. We could feel your love and light shine through the windows and we all agreed that there was just “something about it” from the minute we walked in the front door. Just like there was, is and always will be “something about Emersyn” that everyone talks about. We will now have a backyard for your garden; an extra bedroom for your things and a place closer to nature where we know you will always find us and send us your beautiful butterflies, dragonflies and lady bugs. We love you baby girl yesterday, today and forever and we need your strength and wisdom to guide us through these next few days as we move to our new space that we plan to fill with your love and your special things. You are the heart of any home that we will create and just like the meaning that your beautiful name represents we hope to take your “Home Strength” with us wherever we go.

1 comment:

  1. I just found your blog via Kristin's and I just wanted to say that it is so beautiful and such a touching tribute to your little girl. You are a brillant writer and express many of the emotions I feel on a regular basis. Our son has SMA also and it it a devastating disease with daily struggles and trials. Wishing you all the best with your move and baby on the way.

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