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.......