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, November 22, 2009

Poem by Another Bereaved Mom.....

Please, don't ask me if I'm over it yet I'll never get over it. Please, don’t tell me she's in a better place she's not here with me. Please, don't say at least she isn't suffering I haven't come to terms with why she had to suffer at all. Please, don't tell me you know how I feel unless you have lost a child. Please, don't ask me if I feel better, bereavement isn't a condition that clears up. Please, don't tell me I had her for so many years or months, what year would you chose for your child to die? Please, don't tell me God never gives more than we can bear. Please, just say you are sorry, please just say you remember my child, please just let me talk about my child, please mention my child's name. Please, just let me cry.
~Author Unknown.

Thursday, November 19, 2009

Healthy Anger!

It has been a really rough couple of days. Missing Emersyn like crazy and thinking about all of our memories together. It really is moment to moment and hour by hour in terms of how we are coping. One minute we feel a bit better and the next minute we are plunged back into pain. So exhausting. Our grief reminds us that this is not a "choice" or a thing we recover from, it is like a life long disease that you learn (or at least try to) manage. Time for us is still standing still. Each new day right now feels like one day further away from Emersyn. We are really dreading the upcoming New Year because in 2008 & 2009 she was here. We are wishing that this was all just a really bad dream and that we will wake up and have our beautiful daughter here with us safe and sound. The only way we won't become "bitter" is to let out the entire range of emotions, especially the anger. Big difference between healthy anger that our child is gone and bitterness.

Wednesday, November 18, 2009

Video from The Annual Angel Gala for SMA

The Annual Angel Gala for SMA was this past Saturday, November 14th. Please take a moment and watch the video that was made for this special night
Theresa you did an amazing job!
Melanie, Jason and Emersyn xoxoxoxo

Friday, November 6, 2009

Keepers of Significance........

Parenting from the beyond is what bereaved parents struggle to do after the loss of our children. We cannot watch our child take their first steps, open report cards, clap at dance recitals, cheer at soccer games or see them graduate. A person who lives a full and long life has a life time to create their own kind of unique Significance. We as parents need to marvel with pride as our children learn, grow and mature right before our eyes. We don’t need to announce to the world all of their amazing accomplishments as they are doing it for themselves and how proud we feel to be their parents! We as parents can let our children tell the story of their own Significance.
However, for us bereaved parents our children can no longer create Significance on their own, we bereaved parents have been given the new task of being the “Keepers of Significance”. As Emersyn’s mom I need to make sure that she is understood, appreciated, honoured and remembered by others. Not just on the day of her funeral or on special occasions but every day I need to know she is and always will be a part of this world interwoven into the fabric of who I am. Parents drop their children off at school and wonder and hope that their children are ok. Jason and I feel like we dropped Emersyn off at daycare 212 days ago and we have no idea if she is ok.
Simply thinking that her life will be remembered is not enough for us as parents. We have a desperate need to parent from the beyond and ensure that she is and always will be Significant. It matters that people talk about her, it matters that people say her name even 100 years from now, it matters that she was here and when her name is spoken it brings our child’s legacy to life and what a gift that is. As Emersyn’s mom it is my basic need to know that Emersyn was, is and always will be Significant.
I had another bereaved parent say to me recently that if the physical reflected the emotional right now they would be in the ICU. We can only relate to that feeling all too well.

Monday, November 2, 2009

New "Normal"

Last Halloween Emersyn was about six weeks old and dressed up as a pumpkin. I picked out two pumpkin outfits as I could not decide which one I liked the best. We took pictures of daddy and Emersyn in her costume and it was obviously more for us than her as she was sound asleep for most of our Halloween fun but we could...n't miss the opportunity to photograph our daughters "First Halloween".This year Jason and I spent the day at Michaels's picking out a winter remembrance wreath and stand for her spot at the cemetary. As of November 1st we are no longer allowed to bring flowers as it is too cold and the ground vases will crack.

We picked out a beautiful wreath and had it customized with sparkling copper butterflys and shimmering pine cones for Christmas. Just as I was feeling proud of myself for being able to do this gut wrenching shopping trip I stopped and looked at all of the "earthlings" doing their Christmas shopping and happily browsing the aisles and had the sudden urge to tell them what Jason and I were actually doing there. I wonder what they would have said if they knew that we were picking out a holiday wreath for our daughters grave. This "new normal" certainly does not feel in any way shape or form normal. We are doing what we can to survive all the while trying our best to honour our child. I don't even know what 'normal' is anymore....