When your child dies
2021 ... didn't begin the way I imagined.
Let me start by giving those who don't know me personally the back story.
My name is Sandra Clarke. I'm an artist, educator, maker + craftist. My creative career began in 1998 when my daughter, Emily, started kindergarten. Emily was born with complex heart defects that could not be repaired. As a result, she had 3 major heart operations before her 4th birthday with the knowledge that she would need a heart transplant -- probably in her mid-twenties.
Before Emily was born I worked for the engineering department of a Japanese automotive company. I liked the job and loved the people.
Gary, my husband, and I planned to be a two income family. However, once Emily was born and we learned about her heart health we both decided that one income would be manageable and I would stay home full-time.
And then the weirdest thing happened. Gary was given a wage increase that equaled my lost income. This is important because "and then the weirdest thing happened" is a common thread in our story.
Staying home was awesome after I got over postpartum depression and sleepless nights. I completely understand how sleep deprivation is a form of torture.
I was an unhealthy 210 lbs when Emily was born. After bouncing around the scale for four years I noticed that weight started coming off naturally. It was January 1998. The same month that Emily’s cardiologist announced that they have done everything they can do for her medically.
“Go home and live a great life!” Dr. Christine Boutin happily declared.
Her addendum was -- until Emily needs a heart transplant.
January 1998. I set up our treadmill in the middle of the living room. I was 192 lbs. I learned what foods fueled my body and mind and avoided unhealthy foods -- mostly, I do like the occasional treat.
June 1998. Emily was granted her wish to visit Disney World and have dinner with Minnie Mouse. She was 4.5 years old. She taught herself how to swim in the Give Kids The World Kids Village swimming pool. It was truly a magical experience.
On the plane home both Emily and I cried. I promised her that we would return. We decided then and there that January 2000 would be our next trip to Disney World. Without a job or extra income I would have to rely on “and then the weirdest thing happened” to keep my promise. I had 18-months to make it happen.
Still on the treadmill six nights a week, I found myself at 128 lbs in September 1998 -- Emily started kindergarten that same month.
My little voice said -- you can truly call yourself fit and healthy if you could teach aerobics.
October 1998. I enrolled in a program that earned me credentials to teach fitness classes.
I began teaching fitness classes for the City of Mississauga community centres, and a few small women’s gyms. I was earning Disney World money when Emily was in school and in the evenings when Gary was home. It was a happy time in our lives. We were also planning to make Emily a big sister.
And then the weirdest thing happened -- Emily’s brother, Evan, was born in January 2000. Our Disney World vacation was happily postponed until April 2001.
That was an excellent time for our family. We wanted to create an enchanted life for our children.
Our April 2001 Disney World vacation was magically followed by another Disney World vacation in April 2002. And then more, and more.
Before Facebook there were chat rooms and forums. I joined a Disney fan forum -- and then the weirdest thing happened. I got noticed by Sandra Halket, owner of clickTHEMOUSE.ca Canada’s #1 Disney travel agency. I was Sandra’s first hire -- now clickTHEMOUSE.ca has over 30 cast members. We enjoyed many enchanted family vacations in Florida.
I began to notice that things balanced themselves out. One fitness club closed owing me $400, a month later I was overpaid by another fitness club by $400, and when I tried paying them back they said, “keep it.”
When Evan was 5-months old I called a yoga studio to register us for mommy and me classes. Twenty minutes into the call the studio offered me free yoga training and a job. That happened as we were planning a Disney World vacation and needed the extra enchantment.
Emily was enjoying school, ballet, jazz classes -- while still attending cardiac appointments at the Hospital For Sick Children (Sick Kids) in Toronto. I was her Dr. Mom and learned everything I could about her complex heart defects. Before the internet Dr. Boutin granted me special permission to ask the hospital’s medical library for books about Emily’s heart conditions and surgeries. Standing in the photocopier line with new young doctors, with my sticky-noted textbooks, in my pyjamas, was a typical sight when Emily and I lived in hospital. The Mississauga Library ordered $1500 worth of medical books -- titles I requested from the University of Toronto’s medical library.
We balanced two lives -- enchanted at home -- intense in hospital.
When Emily was 11-years old, I noticed that her ankles were swollen. We were playing on the jungle gym at the park -- I was chasing her up the slide’s ladder when I saw her ankles. I made an appointment with her cardiologist in Mississauga, Dr. Gian Egger. He told us to go to the Sick Kids ER. Emily was diagnosed with a disease called Protein Losing Enteropathy (PLE). People who have a Fontan heart operation have a 10% chance of developing PLE. Emily had her Fontan in October 1997. The internet was available so I learned the hard truth about PLE pdq. PLE’s mortality rate was 50% after 5 years and 90% after 10 years. We always knew that Emily would likely have a shorter life expectancy than her peers, but she was 11 years old. Do I tell her about PLE’s mortality? I waited for the “and then the weirdest thing happened.” But it never came.
It was time to make her bucket list.
In 2009 Emily was granted a second wish because PLE was considered a whole new life threatening event.
We went to California. Emily was a very talented writer and set her intentions to write for the television show CSI New York. Rich Thigpen was Emily’s wish granter and we all spent an incredible day on the set of CSI New York. Producer, Erin Walsh brought us everywhere. We are still friends with Erin. Sadly we lost Rich in 2020. The cast was generous with their time, and yes, Gary Sinise is as kind as you’d think.
The wish trip included visits to several themed parks and studios. We got to visit Disneyland, which was more for me than Emily.
We had our final Disney World vacation as a foursome in 2010.
I left clickTHEMOUSE.ca and stopped teaching fitness classes due to my 100 lbs stress weight gain. My focus was on art and teaching art -- my active meditation and life saver.
Emily was about to start attending the University of Toronto. She was 17 years old.
Her hospitalizations were more frequent.
I was grateful to be in a career (or careers) that afforded me the ability to drop everything when my family needed me. I started teaching art in 1998. It was an excellent opportunity to bring my kids to the classes as I taught. I had many creative and fitness job interviews with toddler Evan on my lap and Emily drawing at a nearby table. It was natural for us.
After 18-months Emily left university. She was in hospital constantly.
When she was in her early 20’s she was accepted in a Creative Writing and Publishing honours degree program at Sheridan College. She excelled. Emily has a great social life, college, a volunteer job at the Mississauga Animal Shelter, and the occasional paying job. But it always ended and she would be hospital again.
When she wasn’t in hospital life was amazing -- enchanted.
In 2018 Emily started the process of being placed on the heart transplant list. It’s a long process and many times we were told that she might not qualify. It became very stressed when her liver doctor wanted Em to have a liver transplant as well. All Emily’s major organs were suffering. The heart transplant team was able to talk the liver transplant team into holding off on a liver transplant.
Early 2019 Emily was admitted to hospital. She would remain there until her heart transplant. During this hospitalization Emily met a new girlfriend, Sarah. Although the relationship didn’t last more than a few months, I will always be grateful for Sarah’s presence in Emily’s life. Sarah would visit Emily and they had so many wonderful times together. Everyday Gary or I would spend the entire day with Emily in hospital. Sarah’s visits gave us respite which we greatly needed.
Emily was on the heart transplant list for 34 days.
On May 30th, 2019, Emily received her new heart.
We will be eternally grateful to the donors family.
Emily came home in August 2019 to recover. Within days she moved out of ours and in with her roommates. Em started taking distance learning classes with Sheridan College -- veterinary administration. Soon she adopted Rocco, a 7-year old shih tzu Jack Russell mix with anxiety issues. Rocco was a problem so they both moved back with us while Emily completed her vet admin courses.
When Emily’s cardiac team said they were starting the transplant candidacy process I asked Emily for her bucket list. She thought long and hard and came to the conclusion that she did, indeed, do everything on her list. Em was a foodie, so we went on a short 4-day trip to Montreal for the food and visit with my family in Cornwall. Our last night was a stay in Kingston, Ontario. It was a great trip we wanted to repeat this summer.
2020 Pandemic. We weren’t going anywhere. Gary, Emily, Evan, and I were vigilant not to get Covid-19. It would be fatal for Emily.
Emily’s recovery from her heart transplant was reasonably smooth. She twice developed a common post-transplant virus called CMV which landed her in hospital for two weeks each time. Due to coronavirus Emily couldn’t have visitors. She actually enjoyed her alone time in hospital.
Summer 2020 Emily wanted nothing more than to go swimming. When it was safe to do so, our gracious friend Penny invited Emily and I to her oasis swimming pool and spa. Thank you Penny.
Emily was a great gift-giver and she planned 2020 Christmas to be the best possible covid Christmas. She ordered our Christmas presents weeks in advance. They were wrapped and under our Christmas tree on December 17th, 2020 when Emily was admitted into hospital for one last time.
CMV came back. This time it was drug resistant. I was able to visit Emily twice when she was in critical care. We had a great time chatting and being foodies. She was in great spirits and making plans for 2021.
Emily missed Christmas at home. We promised that we wouldn’t have Christmas without her. She was too weak to talk much on the phone Christmas day. On December 31st, 2020 Emily’s doctor called saying that Emily wanted him to call us with updates. Emily was having breathing problems. They were sending her to ICU to be placed on a ventilator and dialysis for her failing kidneys. I asked if I could visit. Doctor said, yes, I could visit for an hour the next day.
I arrived in the ICU around 11 am on January 1st, 2021. It’s a family tradition to say, Rabbits, Rabbits, Rabbits, on the first of every month. When I saw Emily I said, Rabbits, Rabbits, Rabbits. She smiled even though the ventilator tube was present. I was met by a doctor who told me that today was the last day of Emily’s life. I called Gary. He immediately came to hospital. We held Emily’s hand as she drifted off to sleep and then died at 1:16 pm.
We are so grateful to have been there when she came into this world, and grateful to be with her when she left.
Her pain is gone and it’s her family and friends who must carry it now.
Like Emily’s life, our pain will be great at times -- but also like Emily’s life, filled joy and will be epic.
It was always going to end this way for Emily. Perhaps a little shocking that she didn’t live longer, but she lived boldly and plentifully and was loved by so many people.
So this is my blog … and my first blog post.
I am calling this blog Visible Mending.
The artist • educator • maker me has been playing with textiles for years -- I’ll chat more about that in another blog post. One of my favourite textile activities is mending clothing -- repair, re-wear -- and employing craftivism as a way to peacefully protest the flawed fashion industry. Mending -- clothes or life -- doesn’t have to be invisible. In fact I like it to be visible. Globally, 2020 was hard, 2016 - 2020 was hard.
2021 didn’t start the way I imagined … and then the weirdest thing happened.
But I’ll save that for my next blog post.