It’s hard to image a loss harder than that of a child. It’s gut-wrenching. Like me, I’m sure you know families who have gone through this kind of grief.  Tamara Grand is a dear friend whose daughter, Clara, was a bright light on earth. Tamara and her family began the tough walk of grief almost two years ago, when Clara left this life. I asked Tamara if she would share some of what she and her family went through to honor Clara and to help other parents and she kindly agreed. Really, though, this piece can help just about anyone. Because maybe, like me, you haven’t been exactly sure what to do to support a loved one who has lost a child. 

A friend of more than 20 years lost her 18-month old more than 30 years ago. She once said to me, “I just wanted people to say her name.”  So let Tamara introduce you to her beloved daughter, Clara. And look at how brightly that young life shines in the photographs.

Please tell us about Clara.

Clara was a loving and kind soul. A joyful, optimistic girl who cared deeply about her family and friends. She was generous with her affections and had an uncanny way of knowing how others were feeling. She was always the first to approach newcomers to a group, sharing a shy smile and assuring them they were welcome.

She was a creative spirit. Happiest when reading, writing stories and inventing games to entertain her younger brother or working on a video or photographic school assignment with a friend. She dreamt of becoming a novelist.

She loved being out-of-doors. In the forest, hiking with her family or her Scouting friends. On the water, kayaking, stand-up-paddleboarding or floating at the lake. Cycling with her dad to the ice-cream shop (as long as he was willing to carry her bike up the hill at the end 🙂 ). She was the best tent-mate at Scout camp.

She was an accomplished photographer, most frequently turning her lens on plants and animals. She loved her ginger cat, Saffron, dearly and was working on convincing me to get another kitten (as well as letting her raise quail in the backyard).

She was a beloved daughter and sister. She was my heart. I was so very proud of the young woman she was becoming and am beyond sad not to be able to watch her grow up.

Under what circumstances did she leave this life? 

Clara’s passing was traumatic and completely unexpected to us, despite her underlying heart condition.

She lived with primary pulmonary hypertension after having heart surgeries at 6 and 21 months to correct a congenital heart defect. We knew for many years that the disease was life-limiting, but daily medication and twice-annual visits to the cardiology clinic seemed to have slowed its progression. Clara did not live her life as a sick child. Most people who knew her were surprised to find out about her heart condition after her death.

A week prior to her passing, Clara experienced several symptoms that are common enough in children. An upset stomach, some minor vomiting, a low-grade fever. Nothing lasting more than a day and she went to school as usual and even to a Hallowe’en party. On her last night at home, she complained of a worsening pain in her side. We kept her home from school the next morning and called the doctor. He diagnosed appendicitis and sent us to the emergency room. The ER staff performed an ultrasound and an MRI. Her appendix was fine. The problem was with her kidney. A large, undiagnosed tumour appeared to have burst. She went into respiratory distress and was placed on oxygen.

The next morning she was taken by ambulance to our local Children’s Hospital and admitted to the ICU. Oncology, cardiology and nephrology worked together to find a solution. Treating the cancer would compromise her already weakened heart and lungs. They felt that she was unlikely to survive surgery. In three days we went from a diagnosis of appendicitis to hearing the ICU doctors tell us that there was nothing they could do for our daughter and that it was time to consider palliative care.

She suffered a cardiac arrest and passed away in hospital on November 6th, 2015. She was just 13-years old.

What were those early days and months of grief like for you?

Honestly, we were in shock. Completely numb. Disbelieving. Trying to understand what had happened and trying to figure out how to change the ending. We were physically exhausted yet couldn’t sleep. Simple tasks like going to the grocery store or the library felt insurmountable.

I had trouble breathing. It felt like there was a heavy weight on my chest all of the time. For the first time in my life I experienced debilitating social anxiety. I dreaded running into people because I didn’t know who did and didn’t know. I took Ativan to get through the day. I played the tape of her last few days and hours over and over in my head.

I blamed myself for not taking her symptoms seriously enough. For not asking more questions of her cardiologist over the years. For being optimistic about her long-term prognosis. For letting them take her into the cardio catheterization lab. For not being with her when she passed away. For trying to get a couple of hours sleep in the parents’ room the night before she died. For not urging her friends to come and see her in the ICU. For not telling her that the doctors couldn’t cure her. For not dying first.

child-lossHow did your family cope? Did you feel you grieved as a family and alone both? Were the two different in how they manifested and if so, how.

Initially? I’m not even sure 🙂

People kept arriving at our house. Family, friends, neighbours. The doorbell was constantly ringing, text messages and emails were flooding in and food and flower deliveries quickly overwhelmed us. We kept moving until we couldn’t. It was all very surreal. I’m still not sure whether it was helpful to be constantly surrounded by people or if it would have been better to have been on our own.

The first week there was so much to do. Tasks to focus on. A service to arrange. Flowers. Accommodations for family members. Shopping for dress shirts and shoes for our boys (who never wear anything but t-shirts and running shoes). Writing an obituary (oh god; who ever thinks they’re going to have to write an obituary for their 13-year old daughter????). Decisions about cremation. What should she wear? Where did we want her remains to be placed? How many death certificates did we need? Informing the schools. Closing government education accounts. Washing the laundry we brought home from the hospital…

We were so fortunate to already have a family therapist in place. We called her from the hospital shortly after Clara passed away and she met us at our house the following morning. Because she knew us as individuals and as a family, she was perfectly positioned to help us figure out what we needed from each other. She helped us understand that while we had all experienced Clara’s death, it would mean different things to each of us and we’d likely grieve in different ways. My husband and I continued to see her regularly for the first year after Clara died.

My husband, sons and I initially grieved together. We were purposeful about it, knowing that a huge proportion of marriages fail and families fall apart after the loss of a child. I think now, we all grieve more or less on our own. Except, of course, on special days; Mother’s and Father’s day, Clara’s birthday, the anniversary of her death. We take extra time on those days to talk about her and share memories of her.

I do worry that the boys are not grieving enough (whatever that means) and that they’ll be repercussions down the road.

In what ways besides the obvious did your life change, after?

For the first time in my life I suffered from anxiety. Being around people made me anxious. I turned down most social invitations. I withdrew from many of my friends and family members. While I have a large social circle (we’ve lived in the same small community for 20+ years and I have taught fitness classes there for the past 10), very quickly it felt like there were only a few people I could truly be myself around.

Even now, 21 months later, the circle of people that I really share my feelings with is small. The rest of the time I wear a mask and pretend that all is well. It’s less exhausting than wearing my heart on my sleeve.

What surprised you the most, if anything?

How unpredictable people were in their responses to our loss.

People we thought we were close to who didn’t acknowledge Clara’s death or our grief because they ‘didn’t know what to say’. Others who may only have been acquaintances at the time, yet stepped in, offering exactly what we needed and holding space for us. Relationships shifted a lot in that first year and continue to do so.

Did any unexpected emotions come up for you and your family?

For a long time I just felt sad. Lately, I’ve started to feel anger.

What do/would you say to other parents whose child has left this life?

It feels like I’m still too close to my own personal grief to be helpful to others. I know what has helped me, but can’t assume that it would be the same for someone else.

Perhaps the simplest sentiment is the best; “I’m so very sorry for your loss. If you’d like to tell me about your child, I’d love to listen”.

Recently a woman who attends my group fitness classes lost her daughter. Other gym members were quick to approach me and tell me the news. I’m not sure if they were being sensitive to how I might respond or if they thought I might have some special insight into what to do. Regardless, I wrote the woman a note and hand-delivered a copy of a book that helped me a lot in the early days (Healing After Loss: Daily Meditations for Working through Grief by Martha Whitmore Hickman,* whose also lost a daughter). I can only hope it’s a comfort to her as well.

child-lossSince her death, has your grief changed any and if so, how? If not, did you expect it to?

Yes. Definitely. The early days and months were absolutely raw. Devastating. A physically crushing blow that I felt every single morning when I woke up. I cried relentlessly. I spent many days in her bedroom lying on her bed going over and over the details of her death.

Now, I think, the edges of my grief are starting to soften. I still have days when it feels as hard and impossible as it did the day she died. There are many minefields and triggers (back to school photos, parents lamenting their kids going away to college, seeing people I strongly associate with Clara).

Sometimes my brain tricks me into thinking that she’s just away for the weekend. Gone to Scout camp. Then the realization that I’ll never see her again, that I’ll spend the rest of my life without being able to hold her and talk to her hits me. It’s like I’m back in the hospital listening to the doctor deliver the news of her death all over again.

She’s still the first thing I think of when I wake up in the morning and the last thought to pass through my mind before I sleep. I wake up in the night thinking of her. I cry, but not every day or for as long as even a year ago.

I think it’s impossible to maintain that level of grief and not become buried by it. I work hard to make life joyful and meaningful for myself and my family. My boys have suffered a rare loss and still need to be ushered on to adulthood.

I have learned to contain my grief. I let it spill out when it needs to and when I have time to attend to it fully. Some days that means a good long cry in the shower. Or having a heart-to-heart conversation with Clara while I’m out on a walk.

Do you use the word “healing” for the process or is there a better word?

I have no idea. Healing doesn’t feel like the right word to me. Nor does ‘moving on’ (I detest that phrase). I tend to think of what we’re doing now as ’surviving’. I hope that we’ll one day get to the point where ’surviving’ becomes ’thriving’.

How did others respond to Clara’s death: family, close friends, acquaintances, others.

We were overwhelmed by the attention Clara’s death received in our community. She was a well-loved little girl who left a big footprint in the various schools she’d attended and the Scouts troop she’d been a part of.

As mentioned earlier, people rushed in to help with meals, taking the boys to activities, helping to coordinate her memorial service, talking to the teachers and counsellors at all three children’s schools etc. We felt very supported and cared for.

What did others do that was helpful? What wasn’t so helpful? What felt like fingernails on a chalkboard?

I don’t think we realized at the time how much of a gift the friends who took on organizing her memorial service gave us. It was attended by more than 500 members of the community. They created a slide show, to music, and helped coordinate the dozen or so people who spoke at the service. We were also grateful to those friends who seemed to know what the ‘hard’ things would be and offered to do them for us (call teachers, arrange to pick up Clara’s things from school, go grocery shopping etc.).

child-lossWhat did you learn from going through this major loss? About yourself, your family, death, life?

People who live through the same trauma don’t necessarily remember or experience it the same way. You can’t assume that others share your specific feelings and perspectives. Communication is key to keeping your family intact as you respond to loss.

Do you feel that you have grown in any way from going through this process? I know that’s a hard word and I don’t imply that it’s necessary or even desirable but I wondered about it.

I don’t like to think of it as growth; that word makes me feel like I’ve gained something through this terrible loss. I can’t imagine that I’ll ever think of Clara’s death as something that anything good came from.

But it has made me more attentive and receptive to the pain others endure. I think that it’s hard to understand what a loss like this feels like until you’ve experienced it. I feel badly for the way I’ve responded to others’ losses in the past and make a conscious effort to be more compassionate to those around me.

It’s also freed me from a lot of ‘shoulds’. I don’t do things I don’t want to. I speak my mind more freely. I am much more aware of where I spend my time and attention. (I’m not sure this is winning me any friends 😉 ).

Friends who have been through this kind of a loss tell me that it’s hard to believe they’ll ever be functional again. 

At first, it’s true. A huge part of your life, and your plan for your life, has been taken from you. It’s nearly impossible to go back out into the world and continue on as you did before. Many people who suffer the loss of a child don’t.

I think there are a lot of factors involved in the return to day-to-day functionality; personality, social support, how traumatic the death was, innate resilience. In our case, having two other children who still needed raising played a big part. My husband and I were determined that they wouldn’t be secondary losses.

Seeing a family therapist was instrumental in our being able to return to work about two months after Clara’s death. Having a sense of purpose (my husband is a university professor, I work as a fitness professional) gave us a reason to get out of bed in the morning. Having an impact on other people’s lives gives you respite from constantly focusing on your own. We made a conscious choice to keep living; a choice that we make daily.

You have a scientific background. Did that play into how you looked at this loss?

It’s funny that you should ask this. My husband and I are both evolutionary biologists. Faith and religion aren’t part of our world view. We had many conversations about how it seemed like it might be easier if we did believe in God and heaven. Having that faith to turn to when our scientific views didn’t provide us with answers or comfort.

I will admit to being much more open to ideas about the afterlife than I was before. I find it hard to believe that life ends and that’s it. I have a vision of Clara playing in a meadow and turning around to look at me when I finally get to wherever the essence of her spirit is. To her, no time has passed since we were last together. This image comforts me immensely.

I can’t thank Tamara enough for sharing Clara’s story with us. As I’ve told her, every time I look at Clara’s photo I see such a bright light and beautiful soul.

*That is an affiliate link.

IF YOU HAVE LOST A CHILD: You are not alone. A national group called Helping Parents Heal is a supportive resource. I met several of the leaders last month and they are wonderful people who have walked a similar road. Chapters are opening in many locations, so check the website, join their Facebook group, sign up for their newsletter and take advantage of the understanding, support and even comfort these beautiful parents offer.

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