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, July 19, 2009

The Gap by: Michael Crenlinsten

"The gap between those who have lost children and those who have not is profoundly difficult to bridge. No one, whose children are well and intact, can be expected to understand what parents who have lost children have absorbed and what they bear. Our children come to us through every blade of grass, every crack in the sidewalk, every bowl of breakfast cereal. We seek contact with their atoms, their hairbrush, their toothbrush, their clothing. We reach for what was integrally woven into the fabric of our lives, now torn and shredded.A black hole has been blown through our souls and indeed, it often does not allow the light to escape. It is a difficult place. For us to enter there, is to be cut deeply and torn anew, each time we go there, by the jagged edges of our loss. Yet we return, again and again, for that is where our children now reside. This will be so for years to come and it will change us profoundly. At some point in the distant future, the edges of that hole will have tempered and softened but the empty space will remain - a life sentence. Our friends will change through this. There is no avoiding it. We grieve for our children, in part, through talking about them and our feelings for having lost them. Some go there with us, others cannot and through their denial and a further measure, however unwittingly, to an already heavy burden. Assuming that we may be feeling "better" six months later is simply "to not get it". The excruciating and isolating reality that bereaved parents feel is hermetically sealed from the nature of any other human experience. Thus it is a trap - those whose compassion and insight we most need are those for whom we abhor the experience that would allow them that sensitivity and capacity. And yet, somehow there are those, each in their own fashion, who have found a way to reach us and stay, to our comfort. They have understood, again each in their own way, that our children remain our children through our memory of them. Their memory is sustained through speaking about them and our feelings about their death. Deny this and you deny their life. Deny their life and you no longer have a place in ours. We recognize that we have moved to an emotional place where it is often very difficult to reach us. Our attempts to be normal are painful and the day to day carries a silent, screaming anguish that accompanies us, sometimes from moment to moment. Were we to give it its own voice we fear we would become truly unreachable, and so we remain "strong" for a host of reasons even as the strength saps our energy and drains our will. Were we to act out our true feelings we would be impossible to be with. We resent having to act normal, yet we dare not do otherwise. People who understand this dynamic are our gold standard. Working our way through this over the years will change us as does every experience - and extreme experience changes one extremely. We know we will begin recovering when, as we have read, it is no longer so painful to be normal. We do not know who we will be at that point or who will still be with us. We have read that the gap is so difficult that, often, bereaved parents must attempt to reach out to friends and relatives or risk losing them. This is our attempt. For those untarnished by such events, who wish to know in some way what they, thankfully, do not know, read this. It may provide a window that is helpful for both sides of the gap."
Written by: Michael Crenlinsten

Thursday, July 16, 2009

Happy 10 Month Birthday Emersyn....

Happy 10 month birthday baby girl!
The 16th of every month for the rest of my life will be a very special and painful day. I felt you with me on my walk yesterday as I crossed over the bridge we used to walk on together when you were first born. Things were so innocent then when we did'nt know you had SMA. I stopped and sat for a little while on your trail and cried. I visited your friend Emily today and gave her a big kiss from you! I know you are watching over her and surrounding their family with love.May you slide down rainbows today and celebrate your special day with all of the other SMA angels.Love you always and forever,Mommy & Daddy xoxoxoxoxoxoxo

Tuesday, July 14, 2009

Thank-you for 'Dancing in the Rain' for SMA.....

Hi everyone (this post will take up two wall spaces) ,We want to send out a huge thank-you to everyone who registered for and came out to the Rebecca Run for SMA on Saturday. Over $150,000 was raised for SMA research how amazing is that? I know the weather was not that great but it didn’t seem to stop people from coming out and running, walking or rolling for such an important cause. The day was filled with a roller coaster of emotions but most of all it was filled with love, support, remembrance, honour and hope. Our hope seems to come in so many different forms. There is hope for families like us that have lost a child to SMA that our grief journey will become bearable and that we will find ways to connect with our children and honour them whenever we can, there is hope that our children who have passed away will always be remembered and that they are happy and full of love and life wherever they are, there is hope that families and children who are living with SMA will have the strength to make it through another day, and of course there is the hope that we will one day beat this disease and find a cure. In our eyes and in the eyes of all children and families affected by SMA you are heroes for being a part of such... an important cause. Here is a quote that I thought was fitting since the rain was also a big part of the Rebecca Run this year:“Life is not about waiting for the storm to pass, it’s about learning how to dance in the rain”.
Thank-you for dancing in the rain,
Wishing you love, peace and hope,Melanie, Jason and Emersyn xoxoxoxoxoxo