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Home is Where the Heart Hurts

How the Taylor family is coping after returning home from the worst nightmare of their lives.

By Tineke Ziemer

October 1^st, 2016

The idea of coming home sounded so perfect; like the nightmare would finally end. But, as the Taylor family would soon discover, coming home from the most traumatic year of their lives did not mean that everything would go back to normal. It meant facing once and for all that their life would never be normal again.

Ten year old, Laurel Taylor, sits on the couch of her partially renovated home and points to the scars all over her body. She knows the cause of each one and describes the procedures with medical terminology no child should ever have to know. She flips through photos on her iPad, memories of her year-long stay in hospitals. Looking at one image, taken while she was hooked up to life support, Laurel rasps, “I’m glad that day is gone and I don’t have to go back.”

Going back is exactly what her parents deal with every day. “A memory is triggered and it makes me stop in my tracks. It’s hard to stay focused sometimes. It brings back emotions and sometimes I cry on my own or get angry. I don’t know how to deal with it. I try to keep myself busy crocheting or editing photos. It’s hard to sit and not do anything,” shares Laurel’s mom, Michelle Taylor.

It’s been eight months since the Taylor family was able to return home to Quesnel following Laurel’s stay at Sick Kids Hospital in Toronto, but every moment of the thirteen month-long nightmare is still engrained in their minds.

Below top left: Laurel points to the scars on her body and describes what procedures caused them.
Top right: Laurel has a rigid schedule for her medications so the Taylor family relies on timers throughout the day for reminders.
Bottom: Laurel holds a photo from the time she spent on life support, thankful that it’s over.

December 14, 2014 saw the Taylor family quickly packing up and heading to Vancouver after tests in Quesnel showed some concerning results for Laurel’s heart. While at BC Children’s Hospital a few days later, their hopes for a minor diagnosis all came crashing down.

“I sat with her that night and her monitor kept going off. Her oxygen was desaturating. At one point it just dropped,” recalls Michelle. “All of a sudden a whole team of doctors comes in. I’m by myself with her and the doctor says, “Get her to ICU stat!” and basically, she prepares me for the worst: that Laurel might go into cardiac arrest, her heart could stop, and that she might have to be intubated. It was like seeing it on TV.”

The doctor may have given them warning, but nothing can prepare a parent to see their eight-year-old child go through all of those worst case scenarios and more over the next year. Laurel was eventually diagnosed with Idiopathic Pulmonary Arterial Hypertension, a condition that causes increased pressure in the pulmonary arteries, which carry blood from the heart into the lungs. Her condition deteriorated so rapidly that life support on ECMO was the only option. Following this, she was put on a Nova Lung, a device that takes the pressure off of her heart and does the work of her damaged lungs, while she awaited a double lung transplant in Toronto. During this time, Laurel suffered two major strokes and several minor ones, resulting in brain damage. Following her lung transplant and a very slow recovery, Laurel was then diagnosed with a type of cancer, common for transplant patients, Post-Transplant Lymphoma Cancer, and began chemotherapy treatment.

“Then there was a code blue called, which means cardiac arrest. It was Laurel.”

Her tiny body had undergone countless medical procedures and scans, several intubations and sedations, not to mention major surgeries. Her heart had reached its limit long ago. Her father, Shawn Taylor, remembers one of the scariest moments of the ordeal. By this point, Laurel was recovering well from her transplant. “She was having a routine procedure where they go in and check things out. Everything seemed fine. We heard a code [over the hospital sound system] but didn’t pay attention. Then there was a code blue called, which means cardiac arrest. It was Laurel. The doctor came in to tell us what happened. Her body went into cardiac arrest during the procedure.”

Below: Reliving painful memories and the constant fear of the unknown keep Shawn and Michelle on an emotional roller coaster.

These memories haunt Laurel’s parents every time she has another one of these tests. “It only took them seconds to bring her back, and the rest of the procedures have gone good. But there’s still this fear in the back of the mind because of the first one,” Shawn confides.

“Looking at kids her age on the soccer field, they are gung-ho, so energetic, and we think, ‘Wow, that could have been our nine-year-old.”

When the Taylors left home, they thought they would be gone for a week. Over a year later, in January of 2016, they finally received the okay. Laurel still remembers how she felt when she received the news that she could go home. “I was very excited! I was looking forward to seeing all my stuffies! Laurel had a list of things she wanted to do when she got home, including seeing her dogs and hugging her bed.

But coming home hasn’t meant an end to the nightmare. In fact, in many ways, the cold, hard reality that their life will never be the same again, has sunk its claws into the Taylor family’s hopes and dreams with more certainty than ever. Not only has their daily life changed dramatically, with a plethora of medications and tests, but being back in their regular environment has highlighted the limitations that Laurel’s new disabilities afford her.

Shawn explains, “Looking at kids her age on the soccer field, they are gung-ho, so energetic, and we think, ‘Wow, that could have been our nine-year-old.” A lot of things really hit home afterwards.”

These limitations are noticed by Laurel’s older sister Brianne as well. “Before, Laurel could run around and play tag. Now she says, ‘No, I can’t run.’ Not at full speed, anyway.” Brianne has taken a protective role over her little sister, because she understands that most people don’t realize the extent of Laurel’s disabilities. “During outside activities, other people don’t understand fully that she can’t move like everyone else can,” explains Brianne. When playing in peer groups, Brianne will take her turn with Laurel in order to prevent anyone else from accidentally hurting her or doing more than Laurel can handle. Her selflessness is evident through the way she talks about her memories of Laurel’s transplant. “I was so happy when Laurel got her new lungs. I didn’t really think of myself at those times.” Brianne continues to put Laurel’s needs above her own, accompanying her sister to children’s church, even though she herself is old enough to stay with the youth group.

Below left: The two sisters share a special bond. Laurel says that the best part of her day is being with Brianne.
Right: One of the biggest changes for Brianne, has been accepting that Laurel‘s new disabilities prevent her from playing the way she used to.

The brain damage resulting from Laurel’s strokes has changed her dramatically. Part of the struggle of adapting to life again for the Taylor family is learning Laurel’s new personality and abilities. “Being home in this environment, it stands out more. Things people take for granted, she has challenges with,” explains Shawn.

Some of those difficulties have become evident as Michelle homeschools her children. “She used to be an amazing reader with good comprehension. Now, she has trouble reading because the words move on the page due to her brain injury.” Laurel also has trouble processing video games and board games. Her long term memory has been affected and she struggles with things like multiplication, even though before her strokes, she had her times tables memorized.

“I used to be awkward around disabled people, but now we treat them with more compassion because we have a snippet of what other people are going through. The personalities and uniqueness of people with disabilities don‘t affect me anymore. It rounds me out,” says Shawn.

Below top: It is difficult for Michelle to witness her daughter struggling with academic subjects that she once excelled in.
Middle: Homeschooling Laurel allows Michelle to work closely with her at the level she needs, as well as preventing Laurel from being exposed to viruses at school. The Taylor home is filled with positive messages in every room.
Bottom left: Playing board games is one way the Taylor family works to rehabilitate Laurel after her brain injury, encouraging her to use logic, strategize and think outside the box. This helps with her ‘executive functioning.’

Another challenge of returning home was the fear of being responsible for Laurel’s care without the specialized medical staff and facilities that Toronto had to offer. Shawn describes some of the thoughts that raced through his mind. “There was a lot of fear coming home. What would life be like to keep her safe? Will we need gloves? Masks? Can we even go into a grocery store? Can we go to church or home group?” Thankfully, they were able to receive more education and transitioned Laurel back into the community right in Toronto.

“There was a lot of fear coming home. What would life be like to keep her safe? Will we need gloves? Masks? Can we even go into a grocery store?”

To avoid rejection, Laurel’s lung transplant has made it necessary to keep her immune system suppressed. This has made the adjustment back into community life a slow one for the Taylors. “In normal life, people go places when they have a cold. Laurel can’t be at places where people are sick. We have to be her advocates.” Michelle describes how this has led to a feeling of isolation from the community. “Sometimes we hold ourselves back from interacting.” She shares an example of a time she was visiting with other homeschooling moms at swim lessons. “A toddler was coughing and sneezing. We can’t bring that cold back to Laurel. Her body can’t fight it off like everyone else. So, I nonchalantly got up, got a coffee and sat by myself. I’d rather not make a big deal of it.”

Shawn added, “When we feel the need to exclude ourselves from an environment, we have awkwardness because we don’t want to offend anyone. We have talked about coming up with a code word. Like if one of us says that word, there’s no questioning, we have to go.”

The threat to Laurel’s safety is very real. It keeps their life in constant uncertainty. Daily, they test Laurel’s levels with a spirometer, which are monitored here in Quesnel. If the numbers are off, they can be asked to bring her to Vancouver with very little notice. At the time of this article being written, the Taylor family has rushed to Vancouver because of this very case, and it’s not the first time since returning that they have had to cancel important plans and head to Vancouver because of a sudden drop in Laurel’s stats.

“We miss the accessibility of doctors, therapists and specialists – there was always someone who could fill our needs [in Toronto],” describes Shawn.

Michelle nods. “As a result, we are always having to put our life on hold. We can’t plan for anything. We are in limbo.”

Shawn agrees, “You find that you stop yourself from planning because of the fear of having to cancel plans or disappointing people. It’s hard to move on. And we wonder, “Is this how it’s always going to be?”

“It feels like the other kids she knew moved on and found other friends, whereas Laurel wasn’t able to move on because her life was on hold. She didn’t have access to a peer group,”

The uniqueness of their situation also makes it hard to find friends who truly know what they are going through. “I feel kind of isolated,” confesses Michelle. “It’s not like Laurel has a common illness that others can identify with. She is the only child in BC being cared for by BC Children’s Hospital who has had a pediatric lung transplant. She is a unique case. It’s hard to find people we can relate with.”

Laurel herself has experienced this isolation the strongest. One of her greatest struggles since returning home has been loneliness. After being surrounded by a caring team of medical professionals, therapeutic clowns, and child life specialists at the hospital, losing those connections and coming home to a world that has gone on without her has been a difficult adjustment. “Laurel’s peer group, that she had previously stayed connected with, some of them don’t even give her the time of day. They don’t even acknowledge her. It feels like the other kids she knew moved on and found other friends, whereas Laurel wasn’t able to move on because her life was on hold. She didn’t have access to a peer group,” explains her dad, sadly.

Michelle adds, “She has lost connections and we are really sad about that.”

The Taylors understand that some people may just feel nervous about approaching them again, and not know what to say after the traumatic ordeal they have been through. In response, Shawn says, “We want people to just talk to us, to be open,” but he admits that when first returning they did keep to themselves for a while to avoid well-meaning people and their medical advice. It has been a real struggle for them to find the balance between needing relationships and needing time to heal. They are grateful for friends who have been patient and have stood by them while they work through these new challenges.

Below: Loneliness has plagued Laurel since returning home.

If circumstances weren’t difficult enough, the Taylors were forced to undergo a massive renovation of their home. What began as a fairly simple project, became a complete overhaul when mold was discovered. Shawn describes what happened. “I came home in mid-November to start our house project. It was just replacing flooring and the furnace to make the house safer for Laurel’s new lungs [from dust and contamination.]” While putting in the floor vents, Shawn found mold, which turned out to be along almost the entire side of the trailer. “Mold is very dangerous for lung conditions. It led to a very extensive renovation being necessary. When Michelle came home in January, many times she would just stand there and cry because of what the project had turned into.”

While putting in the floor vents, Shawn found mold, which turned out to be along almost the entire side of the trailer. “Mold is very dangerous for lung conditions.”

“It was chaos,” Michelle recalls. “Everything was crammed into one room or another. It was unlivable here. I just wanted to come home and live in my home!”

The Taylors were forced to stay with relatives for several months before moving into an RV in their yard while they worked on the project. Currently, they are living inside the home, although the renovation is still underway.

Below: The Taylor‘s are struggling to cope while also undergoing a massive renovation of their home to make it safer for Laurel‘s new lungs.

This, among other things, has made the adjustment to life at home, much more difficult than anticipated. “I didn’t know what to expect,” says Michelle. “I thought we’d be able to jump back into life easier. Everyone thinks we came back and hit the ground running.”

Shawn adds, “People see us back and think everything’s fine. But it’s not.”

The most difficult obstacle to surmount has been the unravelling of emotions that inevitably happens when a family survives a traumatic ordeal. During the year-long nightmare, it was all they could do to put one foot in front of the other and hold themselves together for both of their daughters. Now, with the worst behind them, bolts in the armour are slowly being loosened, and torrents of painful memories seep through the cracks.

“Something will trigger a memory in my day. I have a lot of emotions. I feel angry,” confides Michelle as she and Shawn discuss some of the hardest moments they went through.

“Seeing her hooked up to EMCO [life support] for the first time, it looked like she was dead,” describes Shawn. “And when Michelle was in BC [visiting their daughter, Brianne, who was staying with friends] I witnessed Laurel go through the beginning of a stroke.”

“That is something I struggle with. I worry, am I going to bury my child? You just go numb thinking about it.”

One particular memory haunts Shawn. “In Vancouver, in the beginning, when there was first talk of the transplant, the statistics were horrible. I can’t think about it. I can’t go there.”

Michelle breaks down in tears. “That is something I struggle with. I worry, am I going to bury my child? They can’t gauge how long a set of lungs will last. There is hope of a second chance of a transplant. You just go numb thinking about it.”

This constant fear of the unknown makes it difficult for the Taylor family to feel like life is normal again. They have reached out for help from the mental health community. They both saw counselors while they were in Toronto and Shawn has been actively seeking treatment since returning to Quesnel. He wishes his wife would do the same, “The spouse has a hard time seeing the other spouse not getting help as they struggle through it. It affects the whole family. I don’t want to talk about it, but I know it’s good for me to do.”

While Michelle does plan to seek help eventually, right now she finds it very difficult to open up to a stranger about the painful memories. Thankfully, they both have support from friends and church family and they attribute this as one of the reasons they made it through the most difficult year of their lives. “We had the whole community supporting us. We heard how many people were praying for us all over the world!” enthuses Shawn.

“We made so many wonderful connections with doctors and nurses. They brought us gifts and really genuinely cared for us. They were like our family when we were there,” says Michelle. Their own strength as a family was another key factor. “When one is low, the other supports.” She also adds that their faith brought them through this. “I was angry at God and I still have moments where I wonder ‘why?’ but in the hard times, I saw Him there with Laurel and that gave me comfort.”

Shawn offers advice for how to deal with the difficult emotions they are processing. “Be real with people. Don’t have a façade. Share with people so they can be sad when you’re sad, or joyful when you’re joyful.”

“I was angry at God and I still have moments where I wonder ‘why?’ but in the hard times, I saw Him there with Laurel and that gave me comfort.”

While it was undoubtedly most traumatic for Shawn and Michelle to witness the suffering their child went through, Laurel herself has difficult memories to process. “I’m still a bit sad because I don’t know how it happened. I still have dreams about being in the hospital. I’m happy that it’s over and that there’s not going to be another day that’s as scary as that one. When I found out my lungs weren’t working, I was in shock. I was feeling very sad about myself.”

It is very common for children who have an extended stay in the hospital to go through depression, and despite Laurel’s cheerful countenance in daily life, she was no exception. Shawn describes how it affected her. “She was angry, hitting her devices. She would be screaming, punching, kicking. They had to restrain her.” Laurel was placed on an anti-depressant to help her deal with the torrent of emotional reactions she was going through at the time.

Below: The traumatic year experienced by the Taylor family affects them all differently. Laurel still has dreams that she is in the hospital sometimes and it brings up sad feelings.

All members of the family are able to see the good things that have come from their situation. After experiencing the camaraderie that they can bring to sick kids, Brianne has hopes and dreams of becoming a child life specialist or a therapeutic clown when she grows up. She has also expressed a desire to start a lounge with games and activities for kids in the Quesnel hospital, since she enjoyed the ones at Sick Kids so much.

Shawn and Michelle aspire to use their situation to help others. “We can relate to people who have gone through a traumatic experience. I want to use my experience to help them,” says Michelle.

Shawn nods in agreement. “I know this was very difficult for us, and there’s still difficult moments ahead, but if someone can benefit from what we went through, that will bring us joy. We’ve seen a few of those already.”

“I know this was very difficult for us, and there’s still difficult moments ahead, but if someone can benefit from what we went through, that will bring us joy.”

And Laurel?

“Laurel has been the most positive out of us all,” smiles Michelle.

“My life is more interesting now. It had a dip in it. Something happened and now it changed. Change is good.” Laurel says with a dramatic flourish.

Below top: Things are looking up for Laurel. She has learned to live in the moment and enjoy life fully!
Bottom: Brianne practices some card tricks taught to her by Ranger, a therapeutic clown at Sick Kids Hospital, in hopes of using her life to bring the same joy to other children who are suffering.

One can see that through this ordeal, Laurel has found what most people spend their lives striving for: contentment with the little things; the things that are so often taken for granted. “I have good lungs! I can breathe again! I get to live in my house!”

Laurel has truly learned to live life to the fullest and savour every moment. When asked what the least favourite part of her life is, one would expect to hear about the medications, the tests, or the restrictions she is under, but Laurel doesn’t hesitate a second when she answers, “When I have to go to bed. I wish the day could last forever!”

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To help the Taylor family financially, please visit their fundraising page at this link: https://fundrazr.com/4vRbd?ref=ab_d4Ohp6

Footnotes

Thank you to the Taylor family for their transparency and willingness to share their heart. May their story open all of our eyes to the healing process families go through after a traumatic event.

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FootNotes

Thank you to the Taylor family for their transparency and willingness to share their heart. May their story open all of our eyes to the healing process families go through after a traumatic event.