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.

Emersyn's Story

As they wheeled me from the delivery room to the recovery room everything was very surreal. I was on the most blissful and natural high that only the birth of a child could create. After a very healthy, happy and normal pregnancy I couldn’t believe that our baby girl was finally here. Emersyn arrived right on her due date. After a 22 hour labour, I clearly remember my husband Jason proudly pushing me and our brand new 8 ½ pound daughter down the hospital hallway. I recall a group of “moms to be” on a hospital tour stopping to smile and admire our new bundle of joy in her little pink and yellow hat. I remember how proud and full of love I felt. My midwife’s words at that moment still resonate in my mind, “Melanie your baby girl has chosen to arrive on a beautiful September afternoon”. As she said those words I looked outside as they wheeled me past the sliding glass doors of the maternity ward and the sunshine never looked so bright and beautiful as it did on that glorious day. I was a mom and Jason was a father and this was our adorable daughter with her big brown eyes and spiky black hair. We were a family of three and it felt so right! As our family filed in to meet her it was love at first sight, they were hooked on our first child a beautiful angel disguised as a baby girl and so her story began...
Once upon a time there was a beautiful angel that was looking for a home. She searched all over for a family who she could share her gifts with. These gifts were very special because if received properly would last forever. The angel decided that she would bless a young couple with their first baby, a girl and it was this little girl who would be the bearer of gifts that would change the world forever. And so, on a sunny September afternoon the little angel arrived to meet her proud parents. It was the happiest day of their lives when their baby girl was born. After careful thought and consideration they chose to name her Emersyn, which means Home Strength. They looked forward to teaching her all about life and sharing their pearls of wisdom with her. Little did they know that Emersyn would be the teacher who would give them gifts greater than they could have ever imagined.
The first three months of Emersyn’s life were blissful. Her mom and dad were so proud of their amazing daughter. Everywhere they went everyone commented on how bright her eyes were, how she watched and listened to everyone so deeply, and how she drew you into her with just one glance, and of course they could not help but admire how truly beautiful she was. The couple knew she was special and instinctively felt that she had an urgent sense of purpose, but it wasn’t until later that they would fully understand the depth of the gifts that she carried inside of her. These gifts were hard to see at first because they came in an unexpected package that initially caused great pain and anguish to the young family.
It was on a cold day in December that time stood still as the happy couple was told that their perfect little angel may have a terminal genetic disease. The hopes and dreams they had for their little baby came crashing down around them as they made the painstaking drive home from the hospital to wait for six gruelling weeks for test results. Immediately the young couple were surrounded by support from their family and friends who rushed to their side to comfort them. Emersyn knew that bringing everyone together would help her parents to weather out this treacherous storm.
The couple was amazed that even during this terrible time little Emersyn continued to bring out the love and strength in everyone around her. After weeks of waiting for a diagnosis the news they were dreading finally came, their beautiful baby girl had a terminal genetic disease called Spinal Muscular Atrophy Type 1. Emersyn’s life was going to be short 1-2 years at best and they were told that it would be a difficult battle to say the least. As they cried and held each other tight Emersyn looked into their eyes as if to say trust me mom and dad I know what I am doing and I chose you both as my parents so you could help me share my gifts. Emersyn was a warrior. With bravery and grace she faced tests, doctors, specialists and hospitals all the while smiling and reminding her parents that it did not matter where they were as long as they were together.
Everywhere she went her aunties, granny’s, grandpas, uncles, cousins, friends and family would sing, dance, laugh and play with her as she brought out only the best in everyone. On days when her mommy and daddy thought they could not go on for fear of losing her; little Emersyn taught them that the human spirit is resilient and magnificent. So, no time was wasted and everyone came together and made a pact to give Emersyn the best life possible and celebrate each and every day. The community rallied around to support the young family by dropping off food, sending cards and emails, and making donations and phone calls. Emersyn taught everyone that even in the face of fear you can still find the ability to love, laugh and bond even closer with one another. As the days and weeks went by Emersyn continued to stay strong, but her parents worried about having to make hard choices as her disease progressed. What would Emersyn want us to do? What would Emersyn say if she could tell us? Again, Emersyn looked knowingly at her parents as if to say trust me I know my plan and if you listen closely I will tell you. Mom and dad I love you, and I am going to take away all of the painstaking decisions for you surrounding my medical care by making sure the circumstances are taken out of your control. I want you to enjoy me as your baby girl and I want you to be parents first and foremost and leave the medical stuff up to me. SMA will not take me over because I am greater than that and so are the gifts I have given you because they will live on forever.
And so, on a sunny April afternoon with her magical courage, strength and grace little Emersyn saw that her gifts were received and in the arms of her loving parents decided it was time to break the chains of SMA and return to her billowy soft angel wings. As her parents lay there in the warm glow of their daughter’s soul they realized that it was her last gift that was the most precious of them all. They discovered that their hearts were not broken or torn, but rather they were full and overflowing with tremendous love. They looked to one another while holding their little angel and vowed to share this magnificent gift with the world.
Jason and I carried our daughter’s beautiful body out of the hospital on her sheepie while a trail of doctors, nurses, friends and family followed behind us. This may have seemed crazy to those on the outside but to us it seemed so natural. Our dear friend drove our car to the funeral home while Jason and I sat in the back together with Emersyn. As we arrived at the front door of the funeral home a wise looking women opened the door and motioned us in. The hardest part was leaving Emersyn there. We were always with her. The divine bond we had with our daughter was intense. Before leaving I stopped and looked at the funeral director and told her to take extra special care of Emersyn because she was an angel. The woman looked at me and said “I knew that from the moment I set eyes on her and I am honoured.”
Emersyn was born on Tuesday, September 16th 2008 and passed away from Spinal Muscular Atrophy on Tuesday, April 7th 2009. Tuesday’s child is a child of grace. Graceful Emersyn was indeed. To our first child Emersyn, our darling daughter, teacher and angel we love you, we miss you and we thank you for giving us the gift of you.