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.

Saturday, July 27, 2013

Four years later.......

In roughly 14 weeks Jason and I will be the parents of three kids. At least I hope that is how others see our family because if not that means my first born daughter Emersyn has been forgotten. I know that to those who do not know us we look like the very lucky parents of one extremely awesome little girl with another new baby on the way. That is almost true but one very important little person who would almost be 5 years old is missing and we feel her absence constantly. This is not something I think we should aim to overcome as it does not take away the joy we have in those special moments, it just adds that extra layer of wishing Emersyn were here. We will always wish that. Always. As Isla plays I feel tremendous joy and awe in watching her laugh, learn and develop. As I watch Isla play with girls and boys who are 4 & 5 years old the same age Emersyn would have been now, she is fascinated by them and I can’t help but think how much she would have adored her big sister and how much Emersyn would have adored her.

It might seem as though our grief has become easier over the past four years since losing Emersyn but that is just a myth. The worst myth of all of the grief myths out there, that time heals all wounds. Many wounds time does fix and thank God for that. Wounds where peace can be made, where pain subsides and even understanding emerges but not when it comes to the loss of a child. Time does not heal this wound. No amount of time could ever numb the constant ache in my heart that I am learning to live with each day.

Four years later I have only become better at doing other things and being engaged in the world again. I am learning that I can smile, truly smile and feel joy while at the same time feeling pain - this is a huge break through for me. Not long ago I was completely paralyzed with acute grief where I was so physically, mentally, emotionally, socially and spiritually drained I was not capable of doing anything other than intense grief work and mourning. The hardest loneliest work of all. Don’t get me wrong I am SO grateful that I know just how horrible my grief can be because I can see how much better I am at coping with it now....on most days.

Now I can do day to day things that seemed so impossible in the first while after losing Emersyn but now I do these simple things with a very heavy load on my back, grief. I used to hope that this weight would disappear. But four years later I understand that it’s here to stay. It weighs a ton and if I am not well rested, or if I feel stressed or overwhelmed then I can’t carry this load and everything seems to fall apart. Mornings are hard but as the day goes on it gets easier. I know my grief is a lifelong marathon that is always there beneath the surface and some days it is front and center depending on different triggers. Now when I am grocery shopping and feeling sort of ‘normal’ and perhaps even a little content a song will come on in the store that will bring me to my knees. Time to turn inward again and regroup……and this is the pattern I am coming to accept as my new normal and I am getting better at it.

What I am learning is that each time I fall apart with this load I have no choice but to pick myself up, regroup and carry on for my family, friends, and for myself. One thing I do know for sure is that I am not the same person I was before becoming a bereaved mom but I am getting to know the new me and I’m slowly starting to understand her. To say that I am complex with “high needs” is an understatement ha!

I don’t know what I would do without Isla and Jason. I still can’t believe Isla is here and I could honestly sit and marvel at the chatty, funny, beautiful and heaven sent little girl that she is 24 hours a day. My appreciation for her overwhelms me to the point where I can’t even really explain how much she means to us. Her sensitivity and instincts amaze me. She senses if I am having a hard day even if I have a smile on my face she still picks it up. Isla will ask at only 2 years old “Mommy are you ok? It’s ok Mommy” while she pats my back or gives me a hug. This makes me feel guiltily and grateful at the same time. It was quite the journey to have her here and this little precious baby boy on the way but I am really not sure where I would be without them.

I can see how my skin is a bit “thicker” this pregnancy than it was when I was pregnant with Isla. When I am out in public I brace myself for the now predictable, well intentioned questions and comments. For example, I went to the dentist last week (no fun when pregnant if you have sensitive gums like me!) and my hygienist who knew all about our family and Emersyn had moved so I had a new person cleaning my teeth. Before becoming a bereaved mom this would have been a “no big deal” kind of a thing but with four years of grief under my belt I knew that my new person would ask me if this was my first pregnancy, how old were my other children etc….Of course this happened while she was cleaning my teeth and in between the buzzing, cleaning and scraping I told her all about Emersyn, SMA and how Isla and this little one came to be. Some might say why exhaust yourself. Just tell people who you don’t know you have one other child because what does it matter if they know the truth? It matters to me because these are my children and denying that Emersyn ever existed will haunt me way more than the exhausting but necessary conversation that I will have with new people in my life. This is my truth and it is different for every bereaved parent so I get it if people choose not to share I really do! 

It’s hard when a simple trip to the dentist turns into tears but this is just something that I am starting to accept. I will never accept Emersyn’s death but I have to accept that I must navigate this world without her in a way that I can live with. Some days I can do this with no tears now it just depends on the moment. I truly am getting better at this, it’s exhausting at times but it also gives me the chance to “introduce” Emersyn to new people, show her pictures in my locket, spread awareness about SMA and brag about her for just even five minutes in the grocery store or dentist chair the same way I do with my sweet Isla. I will take whatever Emersyn time I can get. Any downtime I have (not much with my energetic and larger than life 2 year old who keeps me on my toes ha!) my mind goes straight to Emersyn. I feel that I need that time to really connect with her the way I do with Isla.

So here I stand 4 years later with my life saver Isla, supportive as ever husband Jason, another miracle on the way and the same sorrow in my heart that Emersyn isn’t here to be a part of our physical family. Four years later I am acutely aware of the differences in my pregnancies and how innocent I was when pregnant with Emersyn versus Isla and this little miracle. Four years later when joy enters a moment I know to hang on tight and savour every second of it. Four years later whenever a butterfly or dragonfly soars near us I know for sure it is Emersyn and I smile. Four years later my soul feels very very ancient. Four years later I look back and cannot believe what we have all been through as a family. Four years later I have met some extraordinary people in my grief journey and I have leaned on and continue to lean on some pretty amazing family and friends. Four years later I can tell you that I am hurting the same but coping better and able to open my heart to more love because of my children, all three of them.

Sunday, July 7, 2013

2013 Emersyn's Entourage - Thank-you!!

Dear Emersyn’s Entourage,

Jason and I are once again so honored and grateful to have such loyal and supportive friends and family! To all of you who signed up for the 2013 Rebecca Run for SMA, sponsored us, donated and helped to create awareness for this event we thank-you from the bottom of our hearts! It was so great to see everyone on our team and all of our SMA family and friends come out on such a hot, humid and sticky Saturday to run/walk or roll your hearts out for a CURE! Over $100,000 was raised towards a CURE for SMA in just one day – WOW WOW WOW!

This event continues to blow our minds every year with how well it is run and the great vibe in the air! I think our SMA Angels make an extra effort to shine down on us for this day and our beautiful SMA Warriors are such role models with their amazing strength, positive attitudes and determination. I always feel like I have “bits and pieces” of conversations with everyone since it’s such a busy morning but those “bit and pieces” are always of great substance! To connect with SMA parents of beautiful children who are living and thriving with SMA, to connect with our family and friends who continue to share their support, to connect with other bereaved SMA parents is for us a gift in itself and we are grateful for the chance to come together as a community every year!

To my family, friends and coworkers who did some amazing fundraising for our team we thank-you! To Captain R. Wilson Public School where I teach, you continue to humble us as you raised over $600 towards a CURE for SMA!! Students held lemonade stands on the weekends, created posters and donated their loonies and toonies to come out and watch our awesome teachers and students play a very fair (tie -3/3) soccer match! Our junior and intermediate students went around to each classroom in our large school and spoke about SMA facts and sold awareness bracelets. Simply outstanding in every way!

It is on days like these that I feel Emersyn’s spirit very strongly. It is on days like these that I am beyond grateful to be a Mom of such amazing kids. I have a beautiful Angel who continues to stop and make people think, a little girl here on earth that brings happiness wherever she goes and a little boy on the way who has also helped to create more hope and love in my heart. When we have a “bad day” or feel like the difficult things in life are getting the better of us please let our SMA Angels and Warriors beautiful spirits remind us that loving and supporting each other can help create change in our hearts and in our communities and that is a very GOOD thing!

Thank-you for being a part of helping us to find a CURE for SMA all while honoring, remembering and connecting with Emersyn. We hope you all have a safe, relaxing and fun summer with your family and friends!

Lots of love, appreciation and hope,

Melanie, Jason, Isla and Angel Emersyn (and bun in the oven)

“But love does not die. The script of her life is written in my heart and it still glistens in the soul of my memory” ~

Thursday, July 4, 2013

Emersyn ~ My Reason for a CURE

Emersyn. My beautiful first child and my number one reason for going to the Rebecca Run for SMA every year. Thank-you Emersyn's Entourage and to everyone who has sponsored us this year along with raising some much needed awareness for SMA it means more than you know xoxo

2013 Rebecca Run & Emersyn's Entourage Fast Approaching this Satruday July 6th!!