Mourning and Fighting For a CURE

Jason and I have been rallying for a cure, fundraising and creating awareness for SMA since Emersyn was diagnosed and even more so after she passed away. Sometimes I think that we may come across as "ok" since we are both working now, fundraising and carrying on with the day to day tasks of living. The truth is that rallying for a cure for the disease that stole our beautiful daughter from us is something that we feel compelled to do as her parents but as grieving parents we actually have very little energy to do even the most basic of tasks. We want to do so much more with our ideas for our foundation but we feel like we are wearing a 500 pound back pack on our backs (aka grief) so we try to pace ourselves as we know the day when we are ready to launch The Emersyn Paige Foundation for SMA will come. It takes a great deal of energy and concentration to focus on anything when you have lost your child, at least that is how we feel and in speaking with many other bereaved parents is how they feel also.


We are still fragile, broken hearted, depressed and filled with "soul pain" as we mourn the loss of our daughter and this is our right and necessity if we have any hope of healing. Losing Emersyn is not a "sad story" or an isolated incident that we look back on and say "wow that was hard" it is a daily way of living that we struggle and wrestle with and will continue to cope with for the rest of our lives. We have not accepted Emersyn's death because that is not a natural choice any parent can just make. However, we have accepted that we will always live with the chronic pain of missing, loving and being separated from our child. We think about Emersyn and miss her every second of everyday at this point in our grief journey. Our grief is also a link to our child so it is a two edge sword....it is our connection with her and our curse all at the same time.


It takes tremendous energy just to live so for us and for other bereaved parents I just want to share that although we appear to be functioning "well" on the outside we are hurting terribly on the inside but we know that this is normal and dare I say even healthy and we don't need "fixed" we need to be allowed to be angry, sad, pissed off, happy, lonely and the list of complicated emotions goes on and on.....


We have tremendous support from our circle of close family and friends and we are beyond grateful. We have also been so touched and overwhelmed (in a good way!) by the amazing support of people who we have never met and those who we don't see all of the time but still continue to offer their support and understanding. We feel Emersyn comes through to us and connects with us through nature and other people. We seem to have an insatiable need in our grief to be validated, acknowledged and understood. We know that no one person can fill that hunger for understanding and comfort but somehow we keep searching. Sorry if we are wearing you out I know we are a big pain sometimes! (I really do mean that, I know how high maintenance we are) We have been very lucky to have a key group of people who go there with us time and time again, who keep calling, emailing, sending cards and we know that they will always be there for us as they know that this is a life long condition and we need that extra TLC.


Jay and I feel that we NEED and WANT to fight for a cure for SMA and we are honoured to do it and we don't want anymore beautiful children to lose their lives to this monster of a disease! We just want people to know that we are tired, extremely sad, we still cry everyday and we are devastated every time we wake up and realize that Emersyn's physical self is gone in this life. To be bereaved means to have "special needs" so a bereaved parent is a parent who has special emotional needs. This is not a "sad story" that we will move on from this is our tragic reality and 'new normal'. We know most people understand this but we just need to say it sometimes. Fighting for a cure, going back to work or looking "well" does not mean that we are not in pain. We are just trying our best to have reasons to live and honour our beautiful girl while at the same time fight for a cure for SMA so no more children and families will have to live with this pain.