Today I will tell you about our beautiful daughter Emersyn. She had dark black soft spiky hair, the softest puffy “marshmallow” olive coloured skin, a tinier version of daddy’s “bum chin”, beautiful big brown eyes that were wise beyond her years, rosebud lips and round smooth cheeks you just wanted to kiss! She was gentle yet intense, wise, dramatic, charming, particular to a tee, funny, and beautiful both inside and out. She had the softest yet most intense cry you have ever heard, like a little sheep (SMA weakens all of the muscles so children with Type 1 typically have a very soft cry) she got her point across through the sheer intensity of her magnetic energy! Emersyn may have only been 7 months old but she was a complete and full person with a distinct ‘diva’ personality, she had likes and dislikes, favourite shows, people and things she liked to do. It wouldn’t matter if she was 7 months old or 27 years old she was a person with a soul that carries on and a life that meant something.
If you were lucky enough to meet Emersyn you will know about the “magic” that sparked from her, just one look into her big brown knowing eyes and you were hooked for life. Who is this little girl that has changed the world so much?Emersyn did not like regular “baby type toys” she liked the things you never even thought she would look twice at. She loved her multi-coloured slinky from the dollar store , she laughed her head off at her Zowie puppet from Sesame Street, she was fascinated by her magic light up wand from Auntie Erin as we are sure she thought she was a wizard, she loved holding her Bee from daddy, watching her Baby Einstein DVD’s especially Baby Monet and Baby Mozart (although I am sure she would hate to admit that since she did have an air of ‘sophistication’ about her!), bath time because she could move her legs in water and be independent since she was “weightless”, Sophie her “giraffa”, BOOKS and more BOOKS as she would gently but persistently turn the page for us while reading, her eyes lit up with a taste of frozen yogurt from Yogen Fruz at the mall, Henry her Pottery Barn green and pink bird mobile that hung above her change table or “home base” as we would call it, (Henry could fix anything, for some reason one look up at him and she was all smiles), she loved putting her finger in her mouth and moving her soft chubby arms back and forth across her chest which for a child with SMA Type 1 is so very hard to do. She loved her black and white animal art cards from Chapters especially the lion (mommy would make all of the animal sounds as we looked at each card and she loved it), she loved watching the Flintstones with Daddy, car rides were one of her favourite things to do as she loved motion and this would often lull her to sleep, she loved music and dancing with daddy in the family room as he would carry her in his arms flat and dance from one end of the room to the other, daddy and Emersyn also did a pretty good version of ‘OPP’ and ‘Joy and Pain’ with hand actions and everything- a must see ! When Emersyn was younger she loved being carried in the Maya Wrap on my chest where she would fall asleep and coo and gurgle, she loved her doll with the crunchy skirt and big brown eyes from Auntie Becky, she loved lying on her sheepie especially with her portable DVD player in front of her, she loved clothes but hated head bands! Emersyn loved the crunchy paper at the doctor’s office and oddly enough she loved stethoscopes, she loved breast feeding even though it became difficult for her to do once her swallow was gone it’s like she knew she could not do it for much longer so she did it as much as she could for as long as she could, she loved going for walks in her stroller where she would never nap because she knew her time here on earth was limited so she would be intensely awake and alert to every sight and sound around her, she loved sitting in her bouncer and playing with her beads and wrist rattles, she loved the three way mirror in Carter’s where she would stare at herself and check herself out as she tried on several pairs of sunglasses at the same time, she loved sunglasses, birds & ducks of any kind, she loved granny and grandpas Scottish accents and the silly songs that they would sing to her, she loved playing new games with auntie Erin otherwise known as the “Toy Master” and spending time with Auntie Cafrin whose animation and personality fascinated her every day. Emersyn loved lying in the bed with mommy in the morning and smiling and laughing as I would turn my hand into every imaginable shape above her and she would smile and laugh so softly at the anticipation of my hand swooping down to tickle her, she loved when daddy would swing her high above his head and dip her back down on to our bed, she loved being pulled around SUPER fast on a blanket across our hardwood floor for “carpet rides” which in her opinion could always have been faster! Emersyn was a dare devil for motion and speed due to her lack of muscle to crawl or walk so she made sure that she got movement and motion with speed through us, she loved being pulled around the house in our laundry basket while lying on her sheepie, but most of all above everything else Emersyn loved PEOPLE. Sitting in the middle of a few of us talking was her favourite thing to do, she would listen intently and watch what everyone was saying and doing. She would chime in every now and then with a soft “waa” or simply carry on playing with her arms or her toy but at the same time so comforted by the hum of the conversation going on around her. Emersyn made sure she was in the mix of whatever was going on at any given moment; she was the star of the show.
When Emersyn was passing away, one year ago today on Tuesday April 7th 2009, I looked at the Head Intensivist in the ICU and I asked her two very important questions, “do you ever get used to children dying and do you yourself have children”? Her professional and stoic demeanour softened very quickly and her eyes filled with tears as she wept and said, “yes I have two children one boy and one girl and NO NO NO, I will NEVER get used to children dying EVER “. I knew she meant it. As she said this she softly stroked Emersyn’s hair before she cut a piece off to give to us as a physical keepsake of our child. She then helped to take impressions of both a foot mold and hand mold which now sit on our night table in our bedroom. I reach out and squeeze her foot mold when I need strength which is everyday at this point in our journey.
Please don’t ever get used to the thought of Emersyn being gone, please don’t become desensitized to her life and death, please struggle with the fact that she is gone because it is not meant to be ‘accepted’ or overlooked. Don’t be afraid to “go there” with us or talk about our child, it is what we want and need, when you talk about Emersyn you breathe life back into her, it is the ultimate gift to Jason and I. Emersyn was way too bold to ever be ignored in her life or her death! Please don’t ever be complacent with the fact that our child has died, be FURIOUS and angry and question your faith. That is after all how we get to places of deeper love and understanding. We are meant to work hard and question life and death. Put yourself in our shoes for just a moment and you will see that with this great pain, comes the sweetest memories and pearls of wisdom...not a consolation prize by any means as a result of Emersyn’s death but a truth in itself. Trust me Emersyn is worth it just be willing to search for a moment with us. I do not believe that like a sacrificial lamb Emersyn was meant to die so others could learn and grow, it is a choice we make as a result of her death to take gifts out of her life and honour her. Please know we love Emersyn just as much as everyone loves there living children; it is no different except that we cannot see, touch, hear, smell or hold our child in this life again. I wish I could make everyone feel more comfortable about how hard this is but I can’t and I am genuinely sorry for the glaring reality of our loss. Our canopy of innocence has been ripped open forever but the light that does shine through is sacred and brighter than any other light.
One year ago today on April 7th a little after noon our beautiful, precious and brilliant daughter passed away in our arms while we heard her take her very last breath to which we both opened our eyes while holding her and said as if on cue, “she’s gone”. To us her parents, the greatest life that ever lived is gone from this earth. Please ask the Sun to turn off its rays, pack away the clouds, turn off the wind and sweep up the cars on the street because Emersyn is gone, that is how we felt and in many ways still feel. The snow and leaves swirled around outside our hospital room while a power greater than us helped Emersyn, Jason and I reach a higher level of consciousness where all we felt was love in her last hours. Something greater than us helped Emersyn cross over, this we know for sure as the feeling between the three of us was undeniable. We miss you Emersyn with every cell of our bodies and we just don’t work without you but we promise to honour you, love you, tell your story, fight for you, and connect with your spirit that will forever live on.Until we are re-united with you again my fierce and beautiful Emersyn we will always be searching on this journey for signs of YOU,Love your proud parents,Fly free my precious angel girl, fly free of SMA your work here will always carry on........
Love you ~ Mama and Daddy xoxoxoxoxoxoxo
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