Something special is happening this year. This year we are including some very special people in #HockeyForGrace2020. This year all Hockey for Grace team names will be in honour of a baby or child who has died. We would like to introduce you to the 20 children who we will be celebrating, remembering and honouring in this years tournament. Each has touched this world in such special ways and although they each have left us much too soon they will never be forgotten. Please take the time read their stories, and get to know each of these beautiful souls. At the end of each of their stories is also a link where you can head to make a donation to the team of your choice.
We are also incredibly excited to share that Market Brewing Company has generously offering to be our Team Fundraising Sponsor. The team that raises the most will win a $750 bar + food tab at Marketing Brewing!
A big thank you to each of the families who have shared with us a piece of their heart. And a big thank you to Market Brewing for your continued generosity and support.
When my husband, Matt, and I found out we were expecting our third child we were in shock. Matt had a vasectomy 7 months earlier and it didnt even Cross my mind as a possibility I was pregnant.
We did every possible test to make sure everything was ok since I didnt know I was pregnant and opted to find out the gender since we were already had a massive surprise! After two boys and a vasectomy we were going to have a little girl. I had called her a miracle baby from the beginning but when we found out it was a girl it felt like an even bigger miracle!
I was feeling great, our oldest boy was so excited to have a sister and we told the world when we were “in the safe zone”.
I went in at 17 weeks just for a check up with my midwife. I was really excited to maybe hear the heart beat but knew that it might be too early. She tried with the doppler and couldn’t find anything and deep down I just knew something wasn’t right. She gave me a requisition for an ultrasound and I spent the next half hour calling all the x-ray clinics in the area until I found one that had an opening that day.
40 minutes later I was waiting to see my little girl on the ultrasound. They showed her to me and my mom, but they didn’t let me hear the heart beat and said that my midwife would be in touch.
I left the clinic feeling sick and cried most of the way home until I got the call.
“The call” and the next few days were some of the most traumatic days in my life. The call didn’t come until about 230 that day and I asked for a second ultrasound because the first one must be wrong. I had to go to the hospital the next morning for 10. I had the ultrasound and sadly I was the one who was wrong.
I was sent up to labor and delivery. I did not know what was going to happen. I thought that I would be put to sleep and I would wake up and it would all be over with, I was wrong again.
I was given two options; I could go home and let my body naturally deliver her – which could take up to 4 weeks since she was measuring right where she should be so she had passed recently or I could be induced and deliver her at the hospital.
Knowing the complications, I had with my previous deliveries I opted to be induced. Seemed so ironic that I had to have c sections for my boys but that I could give birth to my baby girl who was already gone.
I had several rounds of drugs to get things going and Delivered our baby girl at 343 am August 23rd – she was beautiful and so small. And I got to spend the next 11 hours in the labor and delivery room with her until I had to go for surgery because I never delivered the placenta, and everything had closed back up.
I left the room and never went back. I lost a little part of my heart that day. They sent Alyeska for pathology, but we still haven’t heard anything back on the cause of death. We had Alyeska cremated and she is in the smallest little urn at home with us where she should be. Alyeska was due on February 11th 2020 – which is also our anniversary – this year it will be bittersweet. I’m not sure I’ve felt emotional pain like this before. I had made plans for us as a family- thought about her future. All of the firsts that will never happen. I am still devastated over our loss. I should be going in for a scheduled c section this week but instead I am writing this.
I am so grateful that I was asked to share my story – a massive thank you goes out to those playing on team Alyeska and also to those who are able to support team Alyeska either by donating or being there to cheer them on.
To make a donation to Team Alyeska: https://41035.thankyou4caring.org/2020-team-15-team-alyeska
October 1, 2015 was the day before Aubrey’s due date. I still vividly remember watching Grey’s Anatomy while being entertained by my belly, shifting side to side and thinking, “we’re going to have another baby any day now”. Only a few hours later, my contractions had started but were approximately 10 minutes apart and made the decision to labour at home for a bit.
After catching only a bit of sleep, we woke, sent our oldest daughter off to school and began preparing for our next move. It was at that time that I realized that I hadn’t felt the baby move since waking however I had assumed she was sleeping because we were up most of the night with contractions. I ate and drank something sweet but still couldn’t stir her. We quickly gathered our things and proceeded to the hospital with the full intention of delivering the baby that day, since contractions were still happening and it was my DUE DATE! When we arrived at the hospital, Labour and Delivery triage were unable to locate a fetal heartbeat using the doppler.
Seconds felt like hours!
Panic was starting to fill the room.
There was a mobile ultrasound unit in the room but that too was unable to detect a heartbeat. We were then moved to a private room and an Ultrasound unit was requested from Radiology, somehow giving just a glimmer of hope that maybe with the better unit they would be able to detect something. However, once that ultrasound was performed, it was confirmed that the baby had died. At that time, there was no known reason, but it was assumed it was an umbilical cord accident. After over 30 hours of a very painful labour (epidurals did not work) and a very traumatic delivery, Aubrey Emmerson Twyne was born still, October 3, 2015. She passed during early labour as the result the umbilical cord being wrapped around her torso and around an ankle. She was 8 lbs 11 oz and by all accounts, a beautiful and perfect baby girl except she wasn’t breathing.
In the last 4 years we have met some incredible families. These families have also suffered heartbreaking loss and do so much to honour their own child and those of others. This year, Amy and Chris have incorporated some of those babies & children into Hockey for Grace by affectionately naming all teams after little lives lost. To have Aubrey honoured in Grace’s tournament is such a touching tribute and we are beyond grateful.
Our many thanks to Amy & Chris for such thoughtfulness and to all those who support Hockey for Grace in previous years, this year and for many, many years to come.
Sincerely, Stacy & Scott Twyne
To make a donation to Team Aubrey: https://41035.thankyou4caring.org/2020-team-7-team-aubrey
On April 10, 2014, heaven was graced with our brave and beautiful daughter, Ava Marie. Her big brown eyes, beautiful smile, and infectious laugh will be remembered forever by all who knew her. Ava suffered severe HIE at birth and was given a very poor prognosis. Due to the lack of oxygen she endured during labour, Ava had over 300 seizures in her first few days of life. At first, she wasn’t expected to come home from the NICU, not only did Ava fight to come home, she blessed us with the most amazing two and a half years of our lives.
Ava continued to surprise us every day and taught us more about love and beauty than we could ever know. It was clear from the beginning that Ava had a greater purpose: she touched the hearts of everyone she met and despite her disabilities, she always managed to teach us what was important in life. Ava was perfect in every way and the lessons that she taught us have changed our lives forever. She was the best big sister and the light of our entire family. Ava was always smiling, her smile lit up every room she entered and everyone that met her felt how truly special she was. She was soft and delicate like a flower and had a heart of gold. In her final weeks of life, Ava was admitted to Emily’s house Children’s Hospice where she received specialized care like no other. Ava was embraced by the staff at Emily’s House and was cared for with the kindness, love and compassion that she truly deserved.
Since her passing, Emily’s house has graciously dedicated a memorial garden named: Ava’s Garden. This garden is a wonderful tribute to all the precious children that have passed on at Emily’s House. Ava’s Garden is a place for families to remember and honour their beloved children. These children will never be forgotten, not only will their names be engraved in the memorial stones that fill the garden, they will be forever engraved in our hearts.
Ava was so strong and brave and her purpose was far greater than her short life on this earth. One of Ava’s greatest gifts was her ability to communicate with us. As her parents, we will always be her voice. If Ava could tell us one last thing it would be that her work on this earth is still not done: she can just do more from where she is now.
We know that Ava is smiling down and that her love will continue to grow in this very special garden named in her honour.
Domenic and Christina
To make a donation to Team Ava: https://41035.thankyou4caring.org/2020-team-3-team-ava
In November 2017, we were eagerly awaiting the birth of our first child. We did not know what we were having but were so excited to welcome the new baby into our home and had already fully incorporated her into our life.
We did little things like have Daddy read the baby a bed time story (Baby Oh Baby, The Places You’ll Go) every night. And we did big things like travel out West for the Stampede, describing everything we saw to the baby as we visited places like the Rockies and Emerald Lake. We loved taking our baby everywhere with us and couldn’t wait to get her into our arms.
Things changed at our last midwife appointment just before the due date. Both of us were there because her Daddy never missed an opportunity to hear his baby’s heartbeat. We had family waiting across the street because we were going to finish off the baby’s stocking shopping right after this appointment. With the midwife, we were discussing the pros and cons of each OB and selecting induction dates. When it came time to check the baby’s heart rate, it couldn’t be found
A day later, following an induction, our beautiful baby girl, Bridget Bell Morrison, was born still one day shy of her due date as the result of an umbilical cord accident. She had dark hair and looked like her Daddy. We only had about five hours with her and filled that time with cuddles, kisses, and “love yous”. She was able to “meet” her grandparents, aunts, uncles, and cousins and was sent off with all the love we could give.
We celebrate her brief life every chance we get and are so excited that she has a hockey team named after her.
To make a donation to Team Bridget: https://41035.thankyou4caring.org/2020-team-9-team-bridget
Charlee was our first child. We were so excited to be pregnant and were over the moon when, at our first ultrasound, we were told we were having a girl. We couldn’t wait to share the news with our family… but then it all stopped. Smiles were replaced with tears as the doctors told us Charlee had a form of dwarfism that would not allow her much time with us after birth. The following months were filled with medical appointments, funeral planning and more tears than we thought were possible.
Charlee came into this world on April 29th 2011 and fought hard for her two hours with us. And we will cherish those two hours until our last breaths. There will never be a day we don’t miss our daughter. When we lost Charlee we felt so alone in our grief, worried that nobody would remember her with us. But we were wrong. Having her name and story shared in Hockey for Grace means more than we can put into words. Thank you for letting us know that we are not alone and for remembering Charlee with us.
To make a donation to Team Charlee: https://41035.thankyou4caring.org/2020-team-8-team-charlee
Cole came into this world a little reluctantly on the morning of March 7 2014. He was our first and only child and we couldn’t have been more excited about becoming parents. The first year of Cole’s life went as planned. He was quick to pick things up, he loved an good book and had no time for being on the ground so he decided to start walking at 9 1/2 months. We were settling in as parents, really starting to get the hang of it (if that’s even possible lol). When Cole’s mum went back to work you could regularly find him and I at the local pool, park or play center. Cole was a happy little guy and always up for an adventure.
June 24 2015…… The day life came crashing down on our family. Like any regular day Cole and I were at the local pool, but today was different. Cole wouldn’t go into the water he just wanted to stay in my arms. We had been to the doctor multiple time for a small lump in his abdomen and I thought that may be the reason for this weird behavior. So we left the pool and headed home. Something wasn’t right so I made the decision to take him into the emerge and get him checked out for what I thought was most likely a hernia, boy could I have been more wrong! After a whirlwind visit to the emergency room, multiple tests and a call to his mum to come straight from work I was met by a doc that informed me they were arranging for immediate critical transport down to the Hospital for Sick Kids. The nightmare had begun, although we didn’t know it yet. I went with Cole in the ambulance to the hospital and was met down there by his mum. Again a bunch of tests were quickly preformed and then the team entered with the worst news any parent can hear….. your son has cancer, and it’s bad! We were devastated, but had to pull it together for Cole! I got to the original emergency department just after 1pm in the afternoon, by 2-3am Cole was in the ICU receiving chemo just to try and stop the progression of his disease. Life as we knew it was forever changed!!
Over the next 4 years we were beside Cole every step of the way with his treatments, surgeries and subsequent recoveries. Cole taught us about resilience, about being a warrior, about how not to let life’s circumstances get you down and so much more. Cole was a fighter every step of the way and when he was feeling good he was such a ham!! Cole loved to play with his toys, loved a good book, loved music and dancing, loved his family and especially loved driving anything with a motor!! Between treatments we would leave as soon as his blood counts recovered for camping trips, and any adventure we could think of. The 3 of us were inseparable. When Cole turned 3 years old we were privileged with a Wish Trip and it was not even a question of where we were going, we were going to meet Mickey at Disney. Those 4 years were tough but we made the absolute best of them! When Cole was of age to go to kindergarten he went. He made lots of friends and showed so much compassion for other kids. My favorite story from his teacher is this…. Cole hated saying goodbye in the morning when school started so I asked him to pick a stuffy from his room. Every morning I would hug and kiss the stuffy, then we would put it in his bag. I told him if he missed mommy or daddy during the day to go into his bag and that stuffy had a stored hug and kiss just for him. Well one day Cole noticed another little person in his class having a rough day, so what did he do? He went to his bag got his stuffy and told his little friend that they could have his stored hug and kiss for the day to make them feel better and not be so sad. It was incredible to hear that even after Cole had endured so much that he could still be so sensitive towards others. In January of Cole’s kindergarten year his health once again took a turn, Cole enjoyed school by this point so his mum and I would go into his class and be with him so he could continue to attend. By the middle of May his health was really slowing him down and Cole left school for good. We went camping!! Nature is a medicine of its own and Cole perked up during that last camping trip. We did all his favorite camping activities, driving the truck on my lap in the park, canoeing, splashing in the water and most importantly roasting marshmallows on the fire at night!!
On June 13 2019 Cole took his final breath at home in his mother’s and my arms. Cole never needed his bed in Emily’s house nor any of the things that we had brought into our home for palliative care treatment. He simply did it his way. He went from playing outside, driving his battery car and asking to go for a walk to the park to coming inside and gently and peacefully drifting off and becoming our forever guardian angle.
For the last two years you would have found Cole at the Hockey for Grace tournament cheering on his uncle and I. He would have been playing in the kids area, coming into the dressing room after the games and in the parking lot just being one of the boys! This year Cole will once again be at the tournament, maybe not physically but because of Chris and Amy he will be there in memory and in spirit, and for that I can’t thank them enough.
To make a donation to Team Cole: https://41035.thankyou4caring.org/2020-team-5-team-cole
The worst 4 words any expecting parents can hear is ‘There is no heartbeat’. I heard these 4 words on January 29th 2018.
When my husband, Richard, and I found out we were expecting our second child due in March 2018, we were beyond excited to finish our family and for our daughter, Madelyn, to be a big sister. I was being monitored closely due to complications with my daughter throughout the pregnancy. I had an ultrasound and regular appointment the Friday before and everything was looking great. We even booked my scheduled c-section a few weeks earlier due to placenta insufficiency. On January 29th, at 32 weeks pregnant, I was at work and passed out. I was rushed to the hospital close by where many nurses tried to find the heartbeat and they eventually found one, but it was mine. The OB came in with an ultrasound machine and that is when I found out that our baby was no longer with us and had no heartbeat.
I was taken to get an ultrasound, and shortly after returning back to my hospital room, I was immediately rushed to the OR to deliver him via emergency c-section as my life was in danger. I had a placental abruption that caused us to lose the boy we were hoping for and had to have 6 blood transfusions to save my life.
Dylan Lewis Stephens was born January 29th at 8:07pm at Orillia Soldier’s Memorial Hospital at 4 pounds 3 oz. He was beautiful with a full head of hair, and looked like his daddy and big sister, Madelyn. He is so loved and missed everyday. He changed our world and the way we view life. Our new normal will never be normal again.
I felt so alone, devastated, guilty, heartbroken, and so extremely lost. How could something like this happen to someone? Babies are not supposed to die. 1 in 4 women will experience pregnancy and infant loss. I am 1 in 4.
6 days after losing Dylan, I went to my first PAIL (Pregnancy and Infant Loss) group and met Amy and Chris. They shared Grace’s story and made us feel welcomed. They have been amazing, supportive and they are doing great things in honour of Grace for Emily’s House. Having our baby’s name as a team in Hockey for Grace is so amazing.
Thank you to those playing on Team Dylan and thank you to those who support the team, whether by donating to Team Dylan or being there to cheer them on.
To make a donation to Team Dylan: https://41035.thankyou4caring.org/2020-team-10-team-dylan
Our precious baby boy, Ethan William Henry Cohen, was born on February 7th, 2018 weighing 4 lbs 9 oz. Our first child, and the first grandchild on both sides. He was a little dude, who arrived 4 weeks early at 36 weeks via emergency induction due to lack of growth. Ethan’s growth had slowed down starting in the third trimester but the doctors assured us that everything would be fine, that he would just be a small baby.
We were filled with such joy, but the emotions quickly turned to fear and concern. Immediately, the doctors noticed a number of congenital abnormalities, very poor muscle tone, and he lacked several innate reflexes, one of which was the ability to suck and swallow. The genetics team arrived a few hours after he was born and began to assess the situation. Tests needed to be run as there was suspicion of a genetic syndrome. Ethan was whisked away to undergo a brain ultrasound and lots of bloodwork.
While waiting for answers, Ethan was admitted to the NICU at Mount Sinai. It was a stressful few weeks, but we stayed right by Ethan’s side, trying to teach him to feed and keeping him comfortable. We focused on bonding with our baby, trying to ignore all the wires, tubes, and beeping in the sterile environment of the hospital. We were so sure that everything would be fine and that he just needed some extra time.
When Ethan was about 3 weeks old, we got the call. The test results came back and he had been diagnosed with Smith-Lemli-Opitz Syndrome (SLOS), an extremely rare inherited genetic metabolic disorder. A life-limiting disorder, SLOS affects organ function, causes severe intellectual and physical disability, with no cure and no treatment. Our lives came crashing down.
Ethan’s health continued to decline over the next week and there was no sign of him getting better. The last thing we wanted for our boy was to endure a shortened life filled with pain and we felt so helpless. It was at this point that we had a meeting with Ethan’s neonatologist, geneticist, nurses, and the pediatric palliative care team from SickKids. This was the first time we heard of Emily’s House.
It was the most difficult decision of our lives to move to Emily’s House, but we knew it was the best thing for our sweet little Ethan. Once we moved to Emily’s House, we were able to make wonderful memories with our son. We got the opportunity to actually live in a home-like environment with him. Little things that most would take for granted were monumental moments for us. This included being able to take Ethan outside for a walk in the park, playing with toys, eating at the kitchen table with him, cuddling with him in bed, and celebrating the holidays. Ethan got to celebrate both Easter and Passover with our families. He was also able to meet some puppies and listen to his favourite songs, especially ‘Baby Beluga’, during music therapy. We can’t say enough about the staff that work there who made our stay so memorable with Ethan. They not only helped us with the medical aspects of Ethan’s care but also made sure that we were taken care of as well. Over our time at Emily’s House we also had the privilege to observe first-hand the incredible work they do for children with complex medical needs and their families. Every child is made to feel so loved and special. It truly takes an extraordinary type of person to work and/or volunteer in paediatric palliative care.
After 5 weeks of living at Emily’s House, Ethan took his last breath and passed away by our side. Although his time with us was short, we know he is now at peace, safe from any suffering. It’s hard to believe how much we learned from this special little boy and the unconditional love that one can have for their children. Although these were some very dark times in our lives, there were still rays of sunshine creeping through the clouds. And that ray of sunshine was our son. Ethan will be in our hearts forever.
To make a donation to Team Ethan: https://41035.thankyou4caring.org/2020-team-6-team-ethan
I was 22 when I found out I was pregnant. My husband (Wyatt) and I were excited but nervous since we were so young. I had my doctor’s appointment and she recommended that I do a genetic testing at 11 weeks saying that it’s just an option and it is unlikely anything would come up. I decided that I would do it since I wasn’t worried, and I wanted to do everything possible to make sure the pregnancy was good.
On March 31 Wyatt came to visit for the weekend since he was posted to the base Gagetown in New Brunswick and so I surprised him by taking him to Niagara Falls to have an ultrasound done to find out the gender early, it was a boy. On the drive home I got the call from the genetic department in North York that the test came back positive and we needed to set up an appointment. I don’t remember much of that conversation since I was in pure shock that this was even happening. All I remember are the words “potentially down syndrome”. He flew home two days later on Easter Monday. On the Tuesday I had the first Genetic counselling meeting and was told our child had a 1:2 chance of Down Syndrome. That night while driving home to Base Borden on the highway I was in a car accident. I attempted to change lanes, drove over black ice, and swerved into the guard rail twice. The car came to a stop and I watched cars coming at me so I quickly drove off the road then called Wyatt. I then called me mom and luckily a tow truck pulled over to help me. My mom came and picked me up and took me to the hospital where the baby and I were all cleared.
Wyatt was posted to Borden on the 6th and things seemed less bleak. After that initial genetics meeting things started moving very fast. On the 12th I had an amniocentesis done and on the 13th they confirmed that it wasn’t in fact Down Syndrome. From there we had to book a fetal echocardiogram to see if there was a heart defect that caused the genetic testing to be positive. On the 24th it was confirmed he did in fact have 4 major heart defects, but we were optimistic that we could get him surgery and he would be okay.
We made another genetics appointment for May 3rd with an anatomy scan to look for physical defects. They made us also make a Sick Kids appointment to do a second echocardiogram and meet with a team that would help with his care after birth.
While getting the echocardiogram we received the call about the anatomy scan. They told us that he had multiple defects including having only two fingers on both hands, missing both ulna bones, having shortened humerus bones, two enlarged brain ventricles, an enlarged bladder, underdeveloped urethra, and cysts in his kidneys. We left the echocardiogram and went right to meeting with the fetal cardiologist who stated right as he walked in that he had planned on coming in with one set of information but after hearing his anatomy scan results, had to change that entire set of information. We were told that Gideon would need surgery for his heart but because of all his physical deformities he more than likely wouldn’t survive the surgery he needed. He stated that surgery is very hard on a baby’s body and when you factor in other complications it hinders the success rate of the surgery. We went straight from Sick Kids back to the genetic counselor who informed us that we had a choice to make. We either could continue the pregnancy, do the surgeries, and assume the risk or be induced and deliver him now.
We had one day to decide since we had to have him born before I was officially 20 weeks since the standards stated that once I was 20 weeks he would be considered a still birth and we would be required to pay for a cremation and burial. That Thursday I was induced and at 1:48am we met our son, Gideon Eugene Wade Van Den Elzen – Grunow. We both gave him a middle name of a strong male in our family and we gave him both our last names.
The birth was not a pleasant experience since the staff gave very little emotional support but once we had our son in our hands that all faded. We got lots of photos with him and my mom made a gown for him out of my first communion dress. The priest came with our genetic counselor to do a naming ceremony for him and we were given his footprints. We said our final goodbyes and I sang him the lullaby “You are my Sunshine”. It was the hardest goodbye Wyatt and I ever experienced, and we wouldn’t wish that feeling on any parent. But we were grateful to have been given the chance to hold him, get photo, and get his footprints since not many people are as lucky.
Tissue samples were taken from him to do a full exome sequencing test (the genetic counselor got a bursary to have it paid in full for us) and we were able to find out that he had Cornelia De Lang Syndrome. He was cremated and we were given the remains and he to this day remains in our home with us. We were grateful to have the closure of knowing that what had happened with him was a one off and that the chances of it happening again we’re about 1%.
We now have a 9-month-old daughter that we love dearly and are thankful for everyday.
To make a donation to Team Gideon: https://41035.thankyou4caring.org/2020-team-18-team-gideon
Team Grace Audrey
I became pregnant for the first time in January 2016. My husband and I were thrilled and felt fortunate that it happened so quickly for us. Still, I held my breath until that first ultrasound, with miscarriage statistics in the back of my mind. Seeing that black and white image for the first time made things real and the excitement built with each passing week. At the halfway mark, we found out we were having a girl! I felt great and my midwife said baby and I were perfectly healthy.
Near the sixth month of pregnancy, I was outside with my 5th grade students, enjoying the beautiful weather. To this day, I can’t even explain what I felt, but something was off. I had some discomfort in my ribs and was quite lightheaded and fatigued. I went inside, put my feet up and drank some water. After that, I felt normal again. Still, I had an uneasy feeling that whole afternoon, which prompted me to pull out my home Doppler to listen to baby’s heartbeat. I found it easily at 140 beats/minute. I went to bed reassured.
I rarely used the Doppler, but for some reason, decided to check again the next morning. Nothing. I tried not to panic as I knew this could be normal, but the feeling of fear and dread had already set in. Had I even felt baby move that morning? I couldn’t say. Being my first pregnancy, having an anterior placenta, and barely 24 weeks along, movements had never been strong and consistent. I tried all the tricks to get baby to move and I tried the Doppler several more times before calling my midwife. Long story short, we had the worst confirmed at the hospital that day. Our precious girl had suffered a massive fetomaternal hemorrhage, a rare occurrence that can target healthy pregnancies and that my doctor had not seen himself since 1997. Essentially, the barrier that kept her blood from flowing into mine was broken. She lost her blood to me and her heart stopped beating. She was gone.
On June 27th, 2016 at 6:39a.m., Grace Audrey Turner was born silent. During those twenty hours of being induced, my husband and I questioned if we would even be able to look at her. We were warned that her appearance might not be good. As it turns out, she was more beautiful than we could have imagined. Holding her and kissing her was the greatest gift we could have asked for. It was undoubtedly the most beautiful and heartbreaking moment of our lives. Bittersweet is the best word we could think of to describe it.
Having had two more children since Grace, I can confidently say that while the feelings for, and parenting of, a living child and a dead child are obviously different, one thing that is the same is the love. Holding her in our arms, that outrageous, overwhelming, unconditional love – it’s the same. Grace is a part of us in a way that we cannot fully understand or explain. We don’t expect others to comprehend it unless having experienced something similar themselves. She’s not a sad thing that happened to us. She’s our firstborn and an integral part of our family. It is not the family we had planned, but then again, when does life ever go as planned? Instead of registering Grace for Kindergarten right now, we are sharing her story to help a wonderful family raise money for a worthy cause. We get to celebrate another beautiful Grace and learn about nineteen other amazing children. Not what we envisioned, but there are many gifts to be taken from how it all played out. Through our daughter’s short existence, we have learned so much about compassion and gratitude. I believe we also love our other children so much more deeply because of the sister who came before them. Grace is not with us in the way we had wanted, but she’s with us all the same.
So no, Grace is not a tragic thing that happened to us. She is our daughter who has opened our eyes to so much and who continues to shine her light onto our lives. We love her and are proud to have her represented in this event along with all of these other special children.
To make a donation to Team Grace Audrey: https://41035.thankyou4caring.org/2020-team-14-team-audrey
Team Hayden & Avery
Hayden Alan Gorst, Born Jan. 22, 2005 at Women’s College Hospital in Toronto as a result of an emergency C-Section. He was very early at only 26 ½ weeks gestation, weighing only 1lb 11oz.
During his time at Women’s College, he was growing and becoming less dependant on all the support he was on. On Valentines Day, his health took a turn for the worse. He developed necrotizing enterocolitis (NEC), a disease that destroys the walls of the bowel. We were lucky to have him, if only for just 3 ½ weeks.
Avery Frank Gorst, Born April 2nd, 2006. Less than a year later, we were fortunate to have another pregnancy. As a precaution, Mom was admitted to Women’s College Hospital one month before the due date. During her stay, a routine stress test was performed. They noticed the baby was not responding well and performed another emergency C-Section. Avery did not make it through the surgery.
To make a donation to Team Hayden & Avery: https://41035.thankyou4caring.org/2020-team-17-team-hayden-and-avery
We were newlyweds with the most exciting news to share with our families; we were going to have a baby! We have a big crazy family that could not wait for this little being to arrive. This would be the first baby of the next generation in our family.
We decided to wait to find out the gender of our babe, because there just are not enough surprises left in life. The next 9 months were filled with a pretty boring pregnancy, and as we watched the baby grow on screen, we just could not wait for him or her to arrive.
Fast forward to February 24th, 2019 when the women in our family gathered for a baby shower in celebration of this baby about to arrive in a few weeks, and it started to occur to me when a relative asked, “let us know when we can feel some kicks!” I really did not think much of it, and the busy day came and went, and I never offered for anyone to feel the baby kick. The next morning, I woke up and had a glass of juice and waited, still no notable movements to follow. I told my husband I would make a stop at the hospital before heading to work just to rest my mind assured, but truly I was not even worried.
He ended up bringing me to our local hospital where a nurse in labour and delivery searched for a heartbeat with a fetal monitor… there was a second of relief when we heard a heartbeat (later to be discovered it was my heartbeat that we had heard). A second nurse came in to do the same search and that is when the mood in the room began to shift. Our baby was 37 weeks to the day, and a portable ultrasound was brought in to confirm there was in fact no heartbeat.
It was that day that we found out our sweet baby-to-be was a boy! We were sent home to wait and hear how the next few days would go. We went to visit our OB the following day and found out our options for induction. It was 4 days later that we headed into the hospital to begin the induction process, and it was completely nerve wracking as we had never had a baby before and had no idea what to expect.
Later that afternoon we welcomed our love, Jack Justin Robitaille to the world. It may sound morbid to someone who has not experienced this type of loss before…but we truly had a wonderful day the day we got to meet Jack. We had waited so long to see what he would look like, and we spent as much time with him as we could. Our lives will never be the same since we did not get to take our boy home, but I can confidently say we absolutely loved the short time we had with our son.
Thank you so much for listening to our story and allowing us to share our son with you! Your participation in Hockey for Grace is helping the lives of these children matter and be remembered, and as a parent I am so grateful for that. Go Team Jack!
So much Love,
Marina & Justin Robitaille (Jack’s Parents)
To make a donation to Team Jack: https://41035.thankyou4caring.org/2020-team-20-team-jack
In 2010, we decided we were ready to begin fertility treatment. After spending in excess of $25,000 on failed attempts at IUI and IVF, we decided to call it quits and to do some traveling.
Upon our return from Central America (on April 18, 2013) we learned we were pregnant. We were beyond excited. We began dreaming about our new future; we already had so much love for our baby. Every ultrasound came back perfect and, at 20 weeks,we found out we were having a baby girl.
Due to gestational diabetes, I had extra ultrasounds and testing. In my final weeks these appointments became weekly. Following an ultrasound and NST on December 12, we were told “she couldn’t be anymore perfect”. On December 13, I began to experience early labor and discomfort but enjoyed watching my baby somersault in my belly while watching Christmas movies. That day I finished her Christmas shopping and prepared her nursery. Everything was perfect and we knew she would arrive at any moment.
On December 14, 2013, I woke to the feel of my daughters kicks. Then my water broke. Excitedly I woke my husband and rushed off to the washroom to change my pajamas. Only then did I realize that I was covered in blood, and there was a trail of blood behind me. Frantically, we texted our doula; we got dressed, packed the car, called the midwife, and raced to the hospital, knowing something was wrong but not realizing just what it all meant.
Lying in triage, I could see the panic on the nurses face as she tried desperately to find my baby’s heart beat. She called the doctor in and he tried as well; I could now see his panic and that of my doula. It was then that we would hear the words that that will forever haunt us for the rest of our lives: “I’m so, so sorry, there is no heartbeat”. I was shocked in that moment; I couldn’t cry, I couldn’t scream, I couldn’t move … because I just couldn’t breathe. What I do remember is the doctor asking the nurse for the time so he could note the time of death; he placed his hand on my leg, and my husband fell to the floor, crying for our baby and our lost dreams. Our doula, midwife, and nurses were amazing that day and they didn’t leave our side. After 12 hours of a very painful labour and traumatic birth, on December 14, 2013 at 7:58pm, our beautiful daughter was born into this world, completely quiet and still. Juliana Violet Garcia de Paredes, weighing 7lbs, 14oz. There were no cries from her and no excitement in the room, just tears and sobs from those who already loved her so much. I will never forget that moment that she was placed in my arms, lifeless but still perfect. I counted 10 fat fingers and 10 chubby toes; her daddy cleaned her up, put on her only diaper and got her dressed – all for the first and last time. I was told she had my colour eyes, and my hands and toes but everything else about her looked like daddy! We had 4 hours with her, holding her, talking to her, taking pictures. During that time, we also had her baptized. Those 4 hours would be the only time we would ever have with her, until we meet again.
Juliana was full term and died from what is believed to have been an acute partial placental abruption. The reason why this happened is unknown but is believed to have been the result of my uterus contracting too hard when my water broke, which then resulted in the placenta separating from the uterine wall. Juliana lost her oxygen supply and died immediately.
Some people would say that I didn’t know her, but I carried her and I felt her grow; we longed for the day we would meet her, we dreamed of her future and we fell in love with her. Our hopes and dreams were lost that day, and we had to find our footing in this world all over again. More than 6 years have passed and we continue to long for her and what could have been. Our lives would be forever changed after that day.
We reached out to Pregnancy and Infant Loss Network Peer Led Support and within 2 years we decided to become facilitators to help provide support to grieving parents. That is where we met Grace’s Parents, Amy and Chris.
Like so many other grieving parents, we take comfort in talking about our daughter and hearing people say her name. We are truly honoured to have Juliana recognized at Hockey for Grace this year and to be apart of fundraising for Emily’s House. Thank you to everyone who is supporting Team Juliana whether you are playing on her team, donating to her team, or cheering the team on. Thank you to Grace’s parents for always remembering Juliana with us.
Amanda & Agustin Garcia de Paredes
To make a donation to Team Juliana: https://41035.thankyou4caring.org/2020-team-12-team-juliana
On October 29th 2014 at 11:07 a handsome little boy weighing 5lbs 5oz was born. Jennifer, Paul, and Lilly-Rose were so happy to welcome baby Leo to their family. He was adorable tiny and fragile. We were incredibly happy and excited. Soon after he was born he was transferred to the NICU at Sickkids.
He was diagnosed with Down syndrome and need surgery. After 22 days in the hospital he was released and our life as family in our home started. It was incredible he was a happy sweet boy. He was achieving is milestones and he worked very hard to do so. We were blessed and things were going very well.
In April of 2016 we decided to take a family vacation to Jamaica. It was so much fun. Leo was a little off from the travel but he enjoyed eating sand and swimming in the ocean. When we came home after our travel Leo went in for a routine surgery typical to children with Down Syndrome. Unfortunately the surgery didn’t go as planned. He was a little off and need to be transferred back to Sickkids and had another emergency surgery. This time things were different. He was diagnosed with pulmonary hypertension. Our home life became increasingly difficult and we needed help. Leo was regressing from all the milestones he had achieved. Nonetheless he was still the same sweet loving boy. One minute he’d give you a big smack on the cheek and afterwards smother you with big wet kisses.
We had routine checkups one day we went to Sickkids for our checkup with the cardiologist and they noticed him struggling more then usual. At that moment we started to run more testing. Paul and I were brought aside with a team of doctors and the PAC team from Sickkids. At that time everything they said was a total blur. It was too much information but what we did understand was that he was terminally ill.
We were introduced to Emily’s house at that time. It was a breath of fresh air. To know we had additional support if we needed it. After Lilly-Roses 5th birthday Leo took a turn for the worst. He had lost the ability to crawl and could barely sit up but he would constantly have is arms up looking to be picked up. He was so affectionate, he was the boy that made you feel like you were the only person in the world for him. His face would just melt your heart. Unfortunately he became increasingly uncomfortable and started to have mini strokes. His heart and lungs were failing.
At that moment we knew it was time and we were admitted to Emily’s house. It was a blessing our family started to connect again. We felt like we had a “normal” family life again. This was such an important time for us. All the staff at Emily’s house was so warm, caring, inviting and attentive to Leo’s and our needs. They were so great we Baptized Leo and even got to take him on an adventure to the aquarium before he passed. We are so thankful for everything Emily’s house has done for us. On March 16th, 2017 we said goodbye to Leo. We will never forget our home that we held our sweet baby Leo for the last time.
To make a donation to Team Leo: https://41035.thankyou4caring.org/2020-team-16-team-leo
It took my husband and I a year and a half to become pregnant with Margaux. The month prior I had a miscarriage so, when I found out I was pregnant again so quickly, I was shocked. It was Father’s Day that weekend, so I decided to wait to tell Aaron and surprised him with a card and a cute little onesie that said “Worth the Wait”.
Because of my previous miscarriage we were scared that we would lose this pregnancy as well. But as the weeks passed, and my bloodwork and ultrasound came back promising, the fear faded and the excitement grew. The baby was so active that we called her our little ninja. The theme song to Jeopardy would always get her moving and we were sure she was listening to the questions, absorbing the information, and would be a baby genius.
Aaron was convinced she was a girl from the beginning and, when her gender was confirmed during our anatomy scan, we thought we better finally decide on a name. A few days later Aaron saw a clip from the movie “Christmas Vacation” and nonchalantly suggested the name “Margot”. It was perfect. Not long after that Aaron’s mother suggested the French spelling of the name and our little ninja officially became Margaux.
We spent the weeks and months before Margaux’s due date preparing for her much anticipated arrival. We set up her nursery, bought her stroller and car seat, and curated the perfect little wardrobe. We had a beautiful baby shower and everything was washed, folded, and in its place ready for her. We started to plan all of the adventures we would go on, which sports she would excel at. We imagined what she would be like as an adult, what career she might have – we even joked about how much her wedding was going to cost us. We could see her whole future in front of us.
Despite being in law school Aaron was able to make almost all of my prenatal appointments. We looked forward to them and to hearing Margaux’s heartbeat. At every appointment, we were reassured by how well everything was going and how “textbook” my pregnancy was. Even when I brought up concerns about her change in movement, I was reassured repeatedly that it was normal and that she was happy and healthy.
On February 15th Aaron and I went in for what we thought would be a routine prenatal check. The medical student took the lead on our appointment, asked all the typical questions and then proceeding to have me hop onto the exam table so we could listen to Margaux’s heartbeat. When he put the probe on my stomach, there was nothing – white noise – and I knew. I started trying to rationalize the silence, to come up with a reason the student couldn’t find her heartbeat. The student left the room and returned with the supervising doctor who also tried, and failed, to find Margaux’s heartbeat. We were then sent up to Labour & Delivery for an ultrasound with the on-call obstetrician. After an agonizing few minutes, the obstetrician put down the wand, gathered herself, and said in a quiet voice: “I’m so sorry, her heart has stopped.” And with those words our entire world crumbled around us.
Time stopped and the moments all started to smear together. Rage overtook me and it was everything I could do to keep myself from screaming. But we were alone and knew that birthing Margaux would be a huge undertaking. We swallowed our emotions and focused on the task at hand.
Margaux Isabelle Caroline Sutherland was born at 4:05pm Friday, February 17th, 2017. She weighed 6lbs 15oz and was 20 inches long. She had a full head of almost black hair, chubby cheeks, a button nose, and the most perfect little lips. She was everything. She was our first child and the first grandchild for both families.
We spent an incredible hour and half together. We studied her face and took a few pictures. We cried and laughed and snuggled. We marvelled at how much she looked like me and how perfect she was. I remember thinking how heavy she was. I thought she would be this tiny little thing but she was big and chubby and beautiful. And then we had to give her back.
I wish I could say that we spent hours and hours with her taking pictures and making memories but, for many reasons, that didn’t happen. Not having those things is one of the biggest regrets of my life which is why we are so honoured to be a part of Hockey for Grace in support of Emily’s House – a place that devotes itself to facilitating memory making for families who would otherwise have far fewer.
Margaux is still, and will always be, an important and active member of our family. We talk about her every day and try to include her in all of our adventures. We are so grateful to have her included in Hockey for Grace and for the opportunity to see and hear her name loud and proud. We love her and we miss her.
Aaron & Theresa Sutherland
To make a donation to Team Margaux: https://41035.thankyou4caring.org/2020-team-19-team-margaux
Matthew Geremia was a Sinatra fan. And though his parents and younger brothers kept him happy and smiling, it was Ol’ Blue Eyes that could always put Matthew at ease.
Born at 27 weeks, and diagnosed with cerebral palsy, a life of ease was not in the cards for Matthew. But he was lucky enough to be raised by loving and attentive parents, Marlene and Bruno, who filled the Geremia house with more than just music.
“We always understood the value of home,” says Marlene Geremia.
“We both grew up in caring, happy environments in which the whole family enjoyed being together. When we decided to have children, we wanted to lay that same foundation.”
And while Matthew’s diagnosis demanded considerably more attention than in other homes, it also underscored the importance and impact of unconditional support.
“We tried our best to keep the mood light and positive,” says Bruno.
“But it was the sense of trust and teamwork in the house that made for a lot of happy memories for Matthew and our twins, Alexander and Daniel. I believe that the love and care that we all shared helped Matthew to live much longer than expected.”
Matthew was well into his teenage years when his health began to worsen significantly. And though he was always non-verbal, there was no question in the mind of the Geremias that Matthew would want to spend his final days in the comfort of home.
After a prolonged stay at Sick Kids Hospital, accommodations were made to bring Matthew home, to live out his life according to plan. But with the tumult of nursing staff and medical equipment that were needed to keep Matthew comfortable, the Geremia house no longer felt like home.
It was suggested to Bruno and Marlene that they take a tour through Emily’s House. “That feeling of home hits you almost immediately upon entering Emily’s House. Big windows flood the space with light, and a turn to the right leads you into a huge, collective kitchen space. The kitchen is the social hub of the House and the scene of boisterous meals, family gab sessions and epic parties.
“The minute we walked into Emily’s House, I felt a sense of ease,” says Marlene. “It just felt like home. I was still nervous to see how Matthew would respond upon his arrival. But when we saw what the staff had done to decorate Matthew’s room, I felt like I was going to melt …”
One of the nurses had hung a musical mobile above Matthew’s bed, and the incredible staff and volunteers had decorated the walls with posters of Frank Sinatra. So, Matthew was at ease from the very first moment. With its Sinatra posters and Blue Jays memorabilia, twin brothers, Alexander and Daniel, loved to hang out in Matthew Geremia’s big, bright room at Emily’s House. For over seven months, Emily’s House provided care for Matthew and a quality of life that he wouldn’t have found elsewhere.
“Our twin boys loved being down at Emily’s House with Matthew,” says Bruno. “And we were able to do things as a family that we would never have been able to do elsewhere. From epic Halloween and New Year’s Eve parties, when we kept Matthew up past midnight, to a ‘Fedora’ party, where everyone wore fedoras in honour of Frank Sinatra.
“We felt like a family … when we most needed to feel like a family.”
To make a donation to Team Matthew: https://41035.thankyou4caring.org/2020-team-4-team-matthew
“I would have had a breath of his hair, one kiss of his mouth, one touch of his hand, than an eternity without it…” We were 34 weeks pregnant with our son, Nicholas, when we were told the most devastating news any parents could hear. “Your baby is incompatible with life… he will most likely not survive birth.”
This was the day our world stopped. The day we were told that part of our baby’s brain had had not formed. From that moment on our family would be forever changed.
Nicholas was born on November 7, 2008 at 35 weeks. He was perfect and pure. Ruby red lips, gorgeous, deep red curls and skin just like the little angel that he was. We were able to spend several hours him and cherished each moment. We held him. Kissed him. Memorized him….
Nicholas continues to be an integral part of our family. He has taught us strength when we thought we wouldn’t go on. He has blessed us with abominable spirit… and graced us with infinite love and healing.
To make a donation to Team Nicholas: https://41035.thankyou4caring.org/2020-team-11-team-nicholas
Oliver was our son. In December of 2013 he was diagnosed with Juvenile Myelomonocytic Leukemia (JMML). Not long before he became ill, Ollie started wearing odd socks and so we nicknamed him “Odd Sock Ollie”. A lot of people wore, and continue to wear odd socks, in solidarity and remembrance.
In April of 2014 Ollie received a bone marrow transplant but by August, he had relapsed. A second transplant took place in November of 2014, which also failed.
Our doctors did not give up, giving him chemotherapy to buy time before a planned third transplant. By June 2015, however, we were told that transplant was no longer an option and that the leukemia was too aggressive and spreading quickly. There was nothing more doctors could do.
We took Ollie home and tried to have as much fun as possible. We went to Great Wolf Lodge, arcades, played on the trampoline. He rode in some fancy sports cars, and of course, played lots of video games.
On July 4, we made the decision to move to hospice. We were very fortunate to have an amazing Advanced Care team at Sick Kids, who helped us every step of the way, including while we were at Emily’s House. We were cared for so that we could focus on Ollie.
Bringing Ollie to Emily’s House was one of the hardest decisions of my life. When you are in the storm that is the beginning of the end of your child’s life, every decision about their care just carries so much more weight. You want to be sure they are comfortable and able to do whatever they can that gives them even a small amount of joy.
We decided to come to Emily’s House because we realized that the best way for us to ensure that we could give Ollie that comfort and some measure of happiness, was to allow ourselves to be cared for also. Only then could we focus exclusively on being Ollie’s parents for what little time we had left with him.
The staff here gave us that care and thus the opportunity to have what we might not have had at home, or in the hospital. They supported our family during our most difficult days, in the most meaningful way. That is why Emily’s House will always occupy a special place in our hearts. Thank you …
To make a donation to Team Ollie: https://41035.thankyou4caring.org/2020-team-13-team-ollie
At the age of 15 my daughters life and all of ours changed forever. After numerous visits to emergency and our family doctor, we had finally found out the cause of my daughters worsening leg and hip pain. With her family doctor assuring her the pain was not real, claiming it was depression and weight, Rylie was almost relieved that she finally had a diagnosis and would finally get something for the pain.
Rylie was having shortness of breath. Another trip to Oshawa emergency and a simple chest x-ray confirmed in a few minutes that she had 4th stage cancer. We were told to go home and wait, someone would call us. We didn’t wait, we headed to Sick Kids. Rylie was admitted immediately, tests were done. A team of Dr’s explained to me that Rylie had advanced stage Ewings Sarcoma, a very rare bone cancer that affects 1 in 2million girls diagnosed with cancer. She had 6 months to live. A month before her 16th birthday I had to go and tell my daughter she was going to die.
Rylie was a strong, very intelligent, independent girl. She loved music, make up, and was an amazing artist. Although she didn’t like to go to school, she excelled at it. She planned to be a lawyer. She never complained or wallowed in the fact that she would never make it to 17. Her concern was about me and her brother. She made me promise that I would be happy after she was gone. After a short battle and some great experiences through Make a Wish and Emily s House, she passed away 5 months and 28 days later. April 28, 2014.
Sick Kids connected us to Emily’s House, one of the only pediatric hospices in the area. It had just recently opened. We were so lucky to have this available to us. When the time came, they welcomed us and all our family. We were able to stay in a place that felt like home. It was comfortable and warm. We could all be together. They talked to Rylie about things on her bucket list and made as many as possible happen. They had snakes brought in, had someone come in and do Henna on Rylie (as close as we could get to a tattoo) lol. They even arranged a hot air balloon ride. This was all done at no expense to the family. The staff were amazing. Without Emily’s House, there are very little options for palliative children, none that will cater not only to the child but the family as well.
Emily’s House is a non-profit organization that relies on government funding and private donations to stay open. With the community’s support they will continue to be able to provided this amazing service.
To make a donation to Team Rylie: https://41035.thankyou4caring.org/2020-team-2-team-rylie