What Happened to My Daughter Was Tragic, But I Won’t Let it Be a Tragedy

Ambiguous Grief: A Mother’s Journey through Tragedy and Healing

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“We’re being sent home,” I said. The nurse nodded. She already knew. We stood looking at each other uncomfortably. It’s a moment I go back to a lot: What if I had insisted we stay? At the time, I had no idea how significant that exam room would become to me. It was the last place Grace saw through her eyes, the last time she saw me.

Recently, I read Paul Kalanithi’s memoir, “When Breath Becomes Air.” Paul Kalanithi was a neurosurgeon who passed away from lung cancer. His memoir captures his medical training, battle with terminal cancer, and reflections on mortality. “When Breath Becomes Air” describes the challenges of navigating a complex journey with ambiguous loss. This line from the epilogue written by his wife Lucy after his passing has stuck with me: “What happened to Paul was tragic, but he was not a tragedy.” In the context of my life, it reads: “What happened to my daughter Grace was tragic, but the life we will continue to live will not be a tragedy.”

“Ambiguous Loss” — grief that is not associated with the death of a loved one.

In the spring of 2020, as the pandemic began, I was adjusting to life with four little girls, including newborn twins Lucy and Grace. One morning, Grace developed a fever, prompting an emergency visit where she was diagnosed with bacterial meningitis. Subsequent MRIs revealed an abnormality in her right inner ear, causing unilateral hearing loss but no immediate danger of repeat meningitis. After a brief hospital stay, Grace recovered fully, and, for the next two years, we resumed our normal lives.

May 15, 2022

I had never experienced trauma and was entirely unaware of how lucky I was, living a life untouched by grief. The events over the next two days changed that and brought me into the inner circle of trauma survivors.

The night before May 15, 2022, I put a perfect, albeit a little stuffed up, Grace to bed. A couple of hours into the night, she vomited. She is my fourth child; I am no stranger to vomit. I settled her back to bed and prepared for a night filled with laundry and cuddles. By the morning, I had become more concerned. Grace was still vomiting and getting worse. We headed to the emergency department at the children’s hospital, where Grace was quickly triaged and placed in a room to see a doctor.

While we waited, Grace mostly slept, though she woke up for a minute or two — long enough to have a popsicle. Shortly after, a young peppy man entered the exam room, introduced himself as a resident, and began gathering information. As I gave him my account of the last 12 hours, I was well aware that I looked like an inexperienced parent worrying over a stomach bug. “I think it’s meningitis,” I said, during his physical exam of her. He moved her chin to her chest, checking for stiffness (a typical symptom of meningitis). I briefly told him about her previous meningitis episode. He left shortly after, saying he would chat with the attending and be back. In the meantime, Grace slept. After consulting with his attending physician, he came back and said Grace likely had a stomach virus. I was instructed to take her home, keep her hydrated, and was handed an anti-nausea medication. Then he left.

As I packed up our things, Grace vomited again. The nurse came in to help clean up. On the way out, the nurse gave us the standard line: “If anything changes, bring her back.”

We went home.

What followed were several agonizing hours. Once home, I put Grace in my bed and lay beside her, watching her sleep. I watched her little breaths rise and fall and saw her skin change from pink to grey. Her breaths were too shallow, too quick; they seemed wrong. I honestly don’t know how much time passed before the flicker of ‘mommy instinct’ became a roaring fire. I scooped up my baby and rushed her back to the hospital.

Because we were still in the pandemic, there were COVID-19 screeners at every entrance. As I entered, the screener greeted me, “She won’t wake up,” I said. He rushed me to triage. The nurse took my baby and sprinted to the trauma bay, shouting for the trauma team. I followed, stunned. Embarrassed that I wanted to cry. I tried to stay calm, telling myself, “This isn’t a big deal; don’t cry.” What was happening couldn’t be as serious as it looked.

Dozens of people worked on Grace: her heartbeat wasn’t strong enough, so they gave her epinephrine; her blood pressure was dropping, so they gave her another medication. They took blood, started IVs, gave her antibiotics. Sometime during all this, a social worker asked who I needed to call. My husband and my mom. I don’t know if she called them or I did, but then they were there.

The intensivist arrived to take over Grace’s care from the trauma team. He introduced himself and told us of their plan to transfer her to the PICU. A few minutes passed as the trauma team continued to work on her. They told us she wasn’t strong enough to breathe on her own anymore, and they needed to intubate her right away. I watched a respirologist put a tube through her mouth and into her lungs to breathe for her.

At some point, my mom left to deal with our three other children. Once intubated and “stable,” we walked with Grace to the PICU, which is where we lived for the next month.

In her new PICU room, all the activities continued: more medications and a minor procedure to place a central line. Here, someone told us she was septic; her organs were shutting down. My husband and I sat there silently, staring at our little girl, trying to stay out of the way while everyone worked. Machines beeped, the ventilator whooshed, and we watched Grace. Hours passed, and eventually, my husband had to leave. This was a marathon, not a sprint. Our girls at home needed a parent, and there was no way I would leave Grace, so we decided he would go, and I would stay.

During a lull in activity, Grace’s nurse, trying to give me something to do, asked me to crush some medication in a little cup. After she left the room, I finally allowed myself to cry. Curled up on the parent couch, I mindlessly crushed the pill, trying to sob as quietly as possible so no one would hear me, feeling embarrassed by my emotions. At the time, I was a matter-of-fact person, I had cried a total of 5 times in the past 5 years. There was no room in my line of work for emotional women, especially as a female engineer in the oil and gas industry. But in that hospital room, I was faced with some of the most intense feelings of anguish, hopelessness and despair. And I had no choice but to meet them head on.

The next morning the cause of her sepsis was revealed, she had meningitis — again. Despite being fully vaccinated against it, our previous luck had run out. We would not walk away with mild or moderate consequences. This time, it would be devastating. Throughout all this, Grace never woke up. To understand what was going on in her brain, Grace went for her first of many MRIs; it showed some inflammation and potential brain injury.

After the first MRI, I envied people with religious faith, wishing I could just let go and believe. I couldn’t, so I turned to Matt Haig’s ‘The Comfort Book,’ carrying it around like my own Bible for comfort and hope. Three pages into the book’s first part, an entire page is dedicated to this line — “Nothing is stronger than a small hope that doesn’t give up.” (Haig, 2021). That line became my prayer.

A few days passed, and Grace still lay there, not waking up. We searched for hope wherever we could: We endlessly read and sang to unconscious Grace, thinking that if she heard our voices, she would come back to us. We put up photos of smiling Grace to remind us of our girl. Friends and family visited Grace’s ICU window and left messages written there. But I also had time to think. How did we end up here? I spent hours searching for the ‘answer’ to why this happened again.

The most important job in my life was protecting my children, and I failed. I clearly must have missed something in my care for Grace because, in my heart, I felt it was all my fault. The PICU social worker came by a lot. She tried to convince me that I wasn’t at fault. I could logically see what she was saying. I did everything reasonable to care for my child. I acted on all the information I had, followed advice from doctors, etc. But deep down, I felt like I was to blame. Just recently, in therapy, I realized that trying to prevent every possible danger for your child is unrealistic, helping me understand that what happened to Grace wasn’t entirely my fault.

On day 5, Grace went for her second MRI, which showed things had worsened. The brain injury identified on the previous MRI had progressed, and more areas were injured. The neurology team explained that brain injuries fall on a spectrum. On one end are near-drowning, apoxic brain injuries and on the other are mild concussions. It is easy to give a prognosis for each end of the spectrum, but everything in between falls into a giant black box. And that is where Grace fell, into the black box. Her neurology team couldn’t tell us what to expect, no prognosis, no definitive answers. I prayed my little prayer: nothing is stronger than a small hope that doesn’t give up.

After that news, I spent the day laying in her hospital bed with her, going through waves of despair and sobbing, to numbness and sleep. The days of suppressed emotions were over, I wore every feeling on my sleeve — out in the open for all to see. The intensity of my grief made it impossible to hide my emotions. I became comfortable with showing other people what I was actually feeling, whether they wanted to see it or not.

Things did not look good. As the story of Grace’s MRIs unfolded, her chances of living a life with quality were slipping away. I took down all the photos of smiling Grace, they were too painful to see — that girl was gone. I stopped eating. If she was going to die, then I wanted to, too. My ability to cope was fading, and I wasn’t able to appropriately advocate for Grace. Because of this, my dad started coming to the hospital with me. I would lay with Grace and cry, and he would listen to doctors and then tell me what I needed to know.

At some point, I told my dad that if she died, I would too, and he said, “I’m sorry, but you can’t. You have three other children that need you to live. You cannot let this destroy you. I will not let this destroy our family.” What happened then was a slight pivot for me. Yes, this was the most heartbreaking, life-destroying thing that had ever happened to me, but I would not let it become a tragedy. It wouldn’t be fair to Grace’s legacy if I fell apart. I would take this life-shattering situation and one day make meaning of it. In that moment, I barely believed I could achieve that, but thinking about it gave me a small hope.

On day 7, she went for her fourth MRI. The results of this would tell us if her injuries were too severe for meaningful survival. I spent the day at home, and my husband spent the day with Grace. After lunch, I got a call from my husband; the results were back, and the team was ready to talk to us. As I made my way to the hospital, I continuously repeated to myself, “If she dies, you cannot die…if she dies, you cannot die”.

My husband and I were asked to meet the neurology team in a small meeting room in the PICU. But there was no way I was going to meet anywhere but her room; if they were going to tell me she was gone, I needed to hear it holding her. We sat around her bed, and her neurologist said to us that the results of her MRI were unchanged from the previous one. This was the best possible news we could have hoped for. There was no progression of injury, and she was stable–severely injured, but stable.

The waiting game continued. Would she wake up? We started weaning medications that could be sedating her. She was extubated and breathing on her own, and she began to move; her hands would do a little waving. It was an extremely slow process. A few sensory tests were run to check her hearing and vision, both showed potential impairments. Three and a half weeks after I carried my lifeless child into the hospital, she opened her eyes for the first time — tiny slivers of eyeball. We didn’t know if she could see us, but it was the first sign of consciousness. And then came PICU graduation day. She was well enough to move to a regular unit.

The days in the hospital were long, and Grace still mostly slept. There was a lot of time to think…and obsess: I started looking online for a story or situation that began like Grace’s. I thought if I could find someone with the same condition, I could get a glimpse into what life would be like in the future. I spiralled until her neurologist caught wind of my “research project.” He came to me and said, “It is my job to be her doctor; it is your job to be her mom. Let me do my job.” He was right; I had to let go. I was making myself crazy. So I let go; I blocked all the websites I was frequenting and removed Facebook from my phone. It wasn’t easy; it was like an itch I couldn’t scratch, but I knew I needed to trust her medical team and focus on being Grace’s mom.

Once on a regular unit, we settled into a bit of a routine. Grace started seeing a physiotherapist, occupational therapist and speech-language pathologist daily. Brain injury recovery is exponential in the first two years. I felt so panicked about that time frame; we needed to maximize every therapy to help her achieve as much as she could. Hope faded into the background, two years felt so short.

For the two months we were in the hospital–except for maybe one or two days–I was there full-time. I barely saw my other children, and when I did see them, it was highly likely I was crying. I’m so grateful for our community during this time; they rallied around our other girls and made them feel special and loved. They were spoiled by everyone: wonderful meals, gifts and crafts, and special outings. But at the end of the day, things were still so hard. I didn’t know how to support my three girls through their own grief. Our middle daughter would ask when Grace would be better from her brain injury. Her twin would ask where Grace was and when she was coming home. Hearing one of my girls say that she wished that Grace would be ‘all better’ from her brain injury destroyed me. Grief came in waves, and so did hope.

Eventually, we got a discharge date. I desperately wanted to be home as a family. I wanted her sisters to have their mom back. I wanted to wake up and know she was with us. But it was really scary, and there were so many things we had to learn to care for her. Not only was there the brain injury rehab stuff to learn, but she was deaf, visually impaired and had a whole list of medical conditions as a result of the meningitis. One of our biggest learning curves was communication with Grace. How do you communicate with someone who is deaf-blind? I wanted her to know it was me and that she was loved, but I didn’t know how to do that.

Around that time, I saw this Instagram post:

We are not given
“special children”
because we are
“special people”.
I am a completely
marginal hot mess
mom who is evolving
and growing to be
what her children
need.
I am the *you* you
would be if your child
had a disability, too.
(Maria, 2022)

It is so true. I had to learn, evolve, and grow for Grace. There wasn’t any other option. Many people have commented on how we’re coping: “You are doing so good. You guys go above and beyond for Grace.” What’s the alternative? If this was your child, what would you do?

What have we been up to the last two years? Picking up the pieces. It’s so cliché, but there is no other way to describe it. Navigating a healthcare system designed to support the typical, not the complex. Advocating endlessly, grieving silently and sometimes not so silently, being there for my other children, and continuing to live my life. In the dark days of the PICU, my dad and I began a conversation about meaning, and I’m ready to continue this conversation. It starts here by writing my story and sharing Grace’s experience. This is not a tragedy; it was tragic–and I will make meaning from it.

Citations:

• Kalanithi, P. (2016). When Breath Becomes Air. Random House.
• Haig, M. (2021). The Comfort Book. ‎Penguin Life
• Maria. [@oceanic.mama]. (2022, November 16). Nothin’ special here! And if it seems like we are handling something that you think you couldn’t, don’t put [Photograph]. Instagram https://www.instagram.com/p/ClCaWYKOE1j/?utm_source=ig_web_copy_link&igsh=MzRlODBiNWFlZA==