The parenting lessons I learned from my dying child

Parenting Luke was the greatest learning experience of my life, writes Jennifer Golden.
JANET GOLDEN

Parenting Luke was the greatest learning experience of my life, writes Jennifer Golden.

I hoisted my daughter off the pavement, perching her on my hip as I brushed the silky gold strands of hair from her eyes. At 3, Hannah was already getting too big for me to carry this way, but I needed her reassuring heft to ground me for the conversation we were about to have. Otherwise, I feared, I would simply evaporate into the sky. We were walking through pristine gardens toward the entrance of the Halquist Memorial Inpatient Centre in Virginia, US, a hospice facility where my 16-month-old son had been admitted two days prior.

We had brought Hannah here to say goodbye to her brother.

"This is a special hospital, baby. It is a hospital for people who are about to go to heaven." The social workers had warned my husband and me to avoid speaking in code when discussing Luke's condition with Hannah. People died, they weren't "going to sleep". Luke was in hospice, not a hospital. I needed to clarify the shorthand we had been using the last couple of days, lest my daughter believe that every time someone she loved went into a hospital, they weren't coming out. This was especially imperative now, since, two days before - the day Luke was admitted to the facility - we confirmed that I'd be in a hospital in about nine months, giving birth to our third child.

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Hannah's sweet face twisted into a grimace. Fat tears sprung from her eyes. "Luke's not going to die, is he, Mummy?" she cried. I was shocked by the speed with which she processed these thoughts: heaven equals death equals grief.

I looked straight into her sad eyes - we were both crying now. Answer the question that is asked, the hospice social worker had advised. Be direct. Be honest. Be brief.

"Yes sweetie, I think he is."

Even at the time, I was astounded at my ability to find the words to tell my daughter her baby brother was dying. It felt like the emotional equivalent of the mother who lifts an impossibly heavy object off the child trapped beneath.

But although I hope to never endure a similar conversation again, I have followed that social worker's guidance many times since: answer the question that is asked. Children, even at age 3, are remarkably disciplined about asking the question they want answered, and they have an enviable ability to accept that answer at face value.

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So, several months later, as my belly swelled with Hannah's sister growing inside, I followed the same advice when she asked, "Mum, how does the baby get out of your tummy?" We were crowded into a bathroom stall at a restaurant; I could hear snickering coming from the next stall.

After a momentary flash of panic about explaining the birds and the bees to my toddler, I paused, collected my thoughts and answered the question that was asked.

"I imagine she'll come out the same way you did - through my vagina."

Pause. Wait for the coin to drop.

"Does it hurt?

"Yes, but our bodies are made to do it that way. And the doctors help."

Pause.

"Can I get icecream?"

Fast forward a year or so, when that now-5-year-old asked, "If all a man and woman do at a wedding is dance and kiss, how does a baby get made?" 

I have employed the answer-the-question-that-is-asked technique on any number of dicey topics.

When visiting Luke's grave:

Q: "What is this stone for?"
A: "It marks where Luke's body is buried."
Q: "So his body is under this dirt?"
A: "Yes, it's in a coffin under this dirt."
Q: "But it's probably just bones and stuff now."
A: "Yes, probably."
Q: "Why are you crying?"
A: "I'm sad. I miss Luke."

And on death more generally:
Q: "Am I going to die?"
A: "Everyone dies sometime, but I think you'll live for a long time."
Q: "How do you know?"
A: "Most people live a long time, until they are old."
Q: "Are you going to die?"
A: "Sometime, but I don't think it will be for a long while, until you are all grown up yourself."

Answering the question that is asked is the first step. The tougher part is fighting the urge to elaborate on that answer once delivered. I think of it as a "full-stop" approach, requiring disciplined conclusiveness: listen to the question; answer that question and that question only; full stop; wait for the next question.

The strategy has enabled me to break down complicated, weighty issues into "bite-sized" pieces that are more manageable for a kid's developing brain to process. It gives the child time to digest the information she has heard and come back for more when she is ready. I have been surprised by the number of times Hannah has returned to a conversation out of the blue hours or even days later.

I have benefited, too. This technique enables me to give my kids answers without sharing my emotional baggage. Some of our conversations are fraught with emotional triggers, particularly when my girls have questions about their brother. But answering them directly and honestly and then waiting, sometimes with gritted teeth, for their next one forces me to follow my child's lead instead of going down the rabbit hole of my own grief.

It is not an easy approach. (Nor is it foolproof. Religion, I have found, is a topic that doesn't lend itself to short, declarative statements.) My husband and I want our kids to be thoughtful, well-informed citizens and believe we have an important role to play in their development as such. The "full-stop" approach can feel contradictory to our desire to engage with our children on matters big and small. But anyone who has ever asked their child, "How was school today" and been answered with only a grunt knows the futility of pursuing a conversation when the child isn't ready.

When I hear friends fret over initiating "the sex talk" with their kids, or struggle with how to explain the death of a beloved pet, I sometimes feel lucky to have already cleared those parenting hurdles, and to have had such good advice to follow in doing so.

These feelings of good fortune are bittersweet. I doubt any parent would have wanted to come by that advice the way my husband and I did. Luke's life was too short and too hard, but it wasn't a tragedy.

Parenting him was the greatest learning experience of my life. Of course, the pain of missing him sometimes feels unbearable. So when one of my daughters asks a question that results in an initial "uh-oh" in my brain, I try to savour it, if just for second. It may be a hard conversation, but I know I'm not alone. Luke is right there by my side.

 - The Washington Post

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