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, April 18, 2010

2010 Rebecca Race Honouree - Emersyn Paige Klomp

Hello Everyone,

We sent out an email in February inviting everyone to join Emersyn’s Entourage at this year’s Rebecca Run on Saturday, July 10th at Fairy Lake in Newmarket, Ontario. As everyone knows this year Emersyn is the race honouree. In her honour, our goal is to raise $10,000 and register 150 walker/runners on Emersyn’s Entourage. So far we have 35 people registered on her team, which is a great start!

Should we meet either of these two goals Jason Klomp, Nick Dean, James Wilson, James Dunsmuir and Adam Gizzie have agreed to shave their heads. In addition, we have added two more brave men to the head shaving party. Mr. Steve Palmer and Mr. Dave Brannon have agreed to shave their heads should we register 150 walkers/runners for the race. Thanks gentlemen for volunteering.

The early bird deadline for the race is Friday, April 30th. After this date the fees go up so please register soon. If you are unable to attend, but want to contribute in some way there are two options 1) Register anyway and you will be helping us attain the goal of 150 runners/walker or 2) Go to
http://www.runningroom.com/ and search for either Melanie or myself to sponsor us for the race. To register visit http://www.rebeccarun.com/. All proceeds from the event go directly to Families of SMA Canada. Please forward this email to any friends, family or co-workers that may be interested in joining her team.

Melanie, Emersyn and I need your help, finding a CURE for SMA is not a goal we can achieve alone so we are asking for your help. Please join us in walking, running or rolling for a CURE for SMA while at the same time helping us to honour our beautiful daughter Emersyn who has been taken from this earth far too soon.

Change starts with just one step, please help us to create millions of steps by joining the 2010 Rebecca Run/Walk/Roll towards a CURE for SMA. Looking forward to seeing everyone and your families at this special event.


Melanie, Jason and our angel Emersyn

Wednesday, April 7, 2010

All About Emersyn - Angel Date Dedication

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

Thursday, April 1, 2010

One Year Ago - Timeline

April 2nd 2009 - Emersyn's last day at home before she stopped breathing.
April 3rd 2009 – Emersyn’s doctors had visited our house that morning and said she looked well (well as far as SMA goes) and there was no reason that we could not take her out more. They thought she still had several months at least left to live. Emersyn was nearly 7 months old at this point and we had been living daily with Emersyn’s terrifying SMA diagnosis for four months (she was basically diagnosed at three months old) now and were caring for our terminally ill daughter at home. Emersyn had a g-tube put in her stomach because she lost her swallow at five months old and would choke while breast feeding which was traumatizing for her and for us. She started to need a suction machine a few times per day and was just starting on bi-pap at bed time but otherwise stable and happy and so very smart. She had passed both sleep studies so far so her sat’s were strong. That very afternoon after our check-up with her palliative care team, suddenly without warning Emersyn stopped breathing at her fund raiser “Abracadabra for Emersyn” that was so generously and successfully put on by the school that I teach at. Emersyn was waiting in the car, laying flat (safer for babies with SMA Type 1 to be flat while travelling in a modified car seat) with my sister and father while we ran in for literally 15 minutes to thank everyone for all of their hard work. We had never been away from Emersyn since her diagnosis. My dad came in, grabbed us to come outside and my sister had already began CPR. Emersyn went from smiling and happy with no secretions to eyes rolled back and not breathing in a matter of seconds. It was dark and raining outside and too difficult to perform CPR in the car so Jason ran into the school with her and put her on her on one of the school’s tables and began CPR. I jumped on the table beside them, held Emersyn’s hand and sang her favorite lullaby to her. We still cannot believe this happened, let alone at my place of work and at her fundraising event. An episode such as this one had never happened before and we took her on car rides every night much longer than the time she waited in the car at this event. Jason brought her back with CPR and with help from a few other brave people with chest compressions. The ambulance came and took the three of us to McMaster Children’s Hospital where Emersyn’s doctors were located.
April 3rd, 4th & 5th 2009, - At McMaster Children's Hospital thinking that Emersyn had recovered from her episode and we were told we were going home. She was smiling and happy, never even had a cold or an ounce of fluid in her lungs. April - 6th 2009 - Emersyn took another sudden turn for the worse as her lungs started to collapse and we were moved to the ICU and told she was now dying. We thought we had more time, we thought she would make it to a year old since she had hit that 6 month mark. She had never even had so much as a cold which is rare for children with SMA Type 1 since their lungs are so fragile. They told us the SMA had started to progress so rapidly that her lung muscles were shutting down. They told us she would then last maybe an hour. We still had not even processed that she was actually passing away at this point, I don’t think we have even processed this fact fully yet.
April 7th 2009 - Emersyn lasted 22 hours as she had an extraordinarily strong heart and was otherwise very healthy if it were not for SMA. We held Emersyn for 22 hours while she died. 22 hours..... the exact amount of time that her birth lasted. When Emersyn was born the placenta was in a perfect heart shape, our midwives were blown away by this. Our beautiful daughter passed away in the arms of both Jason and I. We carried her out of the hospital and our friend drove us to the funeral home.Emersyn was a few days short of her 7 month birthday before she passed away.
April 8th,9th & 10th 2009 - We planned her funeral, picked out the clothes to bury her in and chose precious things to place in the casket with her. It was agonizing. We made slideshows and spent hours writing her eulogy and speaking with the minister about what to say and what not to say. We had to pick her burial spot, her head stone and what we wanted it to say. We were stunned.
April 11th 2009 - We looked at our daughter’s physical body for the last time, got through (barely) her funeral service and burial. It was a blur. It was Easter weekend; Emersyn was buried with many special things one of which was a Chocolate Bunny since every child needs something on Easter right?
April 12th 2009 - Woke up, arms empty and literally aching, hearts carved out and replaced with cement. What do we do now that our daughter has been stolen from us?
Now, April 1st 2010 - This long Easter weekend will not be relaxing and filled with joy. It will be a series of painful days leading up to even more painful days. We are lucky to have strong family and friends to offer support, mourn with us and hold us up. I do not want to reach April 8th because as of that day our memories of "this time last year" will not be of Emersyn as they are today when we look back at this day last year, they will be of us grieving and mourning without our child. It is amazing how our hearts really do keep an annual clock.......