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.





















































Friday, December 25, 2009

Thank-you....

Thank-you to my family for helping us bring toys and baked goods to the families at Ronald MacDonald House and McMaster Hospital today. Thank-you to everyone who has given us toys and baked goods to take with us we cannot tell you how much that means to us. Melanie, Jason and Emersyn xoxoxoxoxoxo

Thursday, December 24, 2009

Holidays.....

The pain and sorrow that bereaved parents live with every day is unbearable. This pain is even more intense during the holidays. Our "intact" family has a huge hole in it. Jason and I hurt beyond description for us and for all bereaved parents this Christmas and every day. There are no words to articulate how much we miss Emersyn and ache to have her here with us. We don't want to be strong or brave right now we want to just "be" where we are in our grief. We miss her! We are broken hearted! Of course we are! And we are not fine or ok or hanging in there, that is what we say to people to make the conversation bearable we hurt all the time, and that is the simple and painful truth.

Although Christmas can be a joyful time of year for many and that is truly ( and I mean this) a wonderful thing, it can also be an extremely painful time of year for others who are suffering for all sorts of different reasons. To all of the angels that I have had the honour to know, thank-you for the gifts that you have given us, we miss you and we love you.

Monday, December 21, 2009

"The Myth of Getting Over It" by Steven Kalas

When our first child is born, a loud voice says,"Runners, take your marks!" We hear the starting gun and the race begins. It's a race we must win at all cost. We have to win. The competitionis called "I'll race you to the grave." I'm currently racing three sons. I really want to win. Not everyone wins. I'm soon going on stage to speak before acrowd of parents and loved ones impacted by the death of a child. My address is titled, "The Myth of Getting Over it." It's my attempt to answer the driving questions of grieving parents:When will I get over this? How do I get over this?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 where in 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, yourblocking, 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 entireplay 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.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.
By Steven Kalas

Saturday, December 12, 2009

Reliving The Bomb.......

Exactly one year ago today we were at McMaster with Emersyn in the neurologists office. Emersyn was three months old at this point. Could you imagine having your three month old baby in a neurologists office? We were the only ones with a baby in the waiting room. We had never heard of SMA and it was on this day last year that an EMG test was done on Emersyn which was so painful for her that she passed out in my arms when it was done. During the EMG she was so brave and Jason held her hand while I sang to her and basically covered her face with mine. Auntie Catherine had to help work the EMG machine as the nurse was unavailable. That was extremely traumatizing for Catherine to have to do but she did it for Emersyn. We had no idea he was even going to test her for anything that day, we thought it was just a verbal consult.We were blown away that he was even performing any tests that day. Emersyn was a hero. Most adults could not have tolerated how painful the EMG was.

The neurologist kept commenting on how social and bright she was and as he was doing the EMG he was saying "come on Emersyn please pass this test sweet heart"! He was rooting for her muscles to respond strongly. It was after she failed to pass the EMG test that the neurologist looked at us and said "I am 60% sure that she has SMA, but we will need a genetic blood test to confirm it". We had never heard of SMA and when he told us that if she had it she would most likely die within a year we basically went into shock. Three days after the EMG was her blood test for SMA to confirm his clinical diagnosis. Then the 6 week wait over Christmas began.....

Monday, December 7, 2009

Decorating Emersyn's Special Spot......

Thanks for helping to decorate Emersyn's spot Auntie Cafrin, even in the rain you pulled through with us! This past Sunday we decorated Emersyn's resting place with two small Christmas trees and garland that wraps around her bench, and beside her remembrance wreath that sits on her stone stands a solar glass snow flake that lights up at night and changes colour. It was an extremely difficult thing for us to do, but with the help of our family we decorated Emersyn's special place. We hope it brings comfort to other families who visit The Garden of Angels. The Garden of Angels is a beautiful spot in the cemetary where only children are buried. We do not feel able to put up our "big tree" this year at home so we have put up a small tree that sits on Emersyn's special chest in our family room.

This tree is to honour her, she loved looking at all of the lights last year on the big tree and it brought us comfort during a very difficult time while we were waiting on her diagnosis. Emersyn was tested for SMA on Dec 13th and we received her results on January 24th 2009. We still feel that we are frozen in that ti...me period last year because for our family that is when time stood still. I remember saying to Jason last year while at the doctors office with Emersyn that it feels like we are in a snow globe watching the world go on around us while we are frozen in time with our child.

Friday, December 4, 2009

Missing You.....

Missing my little girl so much and can't believe how unyielding this pain is. However, I have lost the most precious treasure in my life so this kind of pain makes a great deal of sense. Just wish I could have one more day with you Emersyn, I miss you watching me brush my teeth in the morning and laughing at mommy's tooth paste filled mouth! If I only I could go back in time and freeze those moments.....