A Personal Essay On Talking To Children About Terminal Illness
by Carrie Jade Williams | Carrie is an Assistive Tech obsessed person who recently appeared on the Guilty Feminist Podcast and has a Netflix documentary coming out about accessibility and assistive tech. She is 32 and living with a degenerative, neurological illness and relies on assistive tech to communicate.
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Will there be a phone in heaven?
My 6-year-old Goddaughter had asked in the middle of a zoom call. This question wasn’t as strange as it seemed given that 8 weeks ago, I’d had to tell my friends and family I was terminally ill. After the adults had absorbed this news, we’d all attended a group therapy session to learn how to gently introduce the idea that I was dying.
Only we hadn’t really planned for such smart questions from the children.
Will there be a phone in heaven?
The bereavement therapist had given us clear advice:
- Talk about death in an age-appropriate way.
- Discuss disability.
- Be open.
- Create memories.
She clearly hadn’t factored in these smart little ones.
In the weeks after my terminal diagnosis, I’d had a lot of advice about telling people. Read books, blogs, leaflets. I’d spoken to therapists and listened to podcasts. I was especially conscious of not traumatising my Goddaughters (all under 12 years old).
One of the therapists had helped me put together a plan for starting the conversation with the youngest children in my life. After speaking with their parents, I’d mailed a den building kit and my friend had spent an hour building and filling the structure with the fairy lights and blankets I’d put in the box. With her girls snuggled next to her, she’d gently started the conversation.
“You know one day we will all go to Heaven,” she’d said gently. “Aunt Carrie might get there before us. You know how she likes to be on time for everything.”
“Will Aunty Carrie go to Heaven on an aeroplane?” her 6-year-old had said innocently.
“Not on a plane.” My friend had said honouring the advice we had all been given- to tell the truth but be gentle.
They’d chatted more, according to my best friend who had sobbed down the phone later on. Dodged the real reason for having the conversation but planted the seed that no-one really wanted to face.
I am 33 and unlikely to see 35. All the plans I’d had of being at my godchildren’s weddings, graduations, and birthday parties had been erased by the terminal neurological illness. Unlike a cancer diagnosis, we had to face the fact that my neurological illness was degenerative and that the children in my life would need to be told before I died due to the medical equipment being added to my life.
Discuss Disability
Even though we were all socially distanced the feeding tube was visible and we’d all agreed that any questions would be answered.
“What’s that?” miss-is-there-a-phone-in-heaven asked as soon as she spied the plastic tube.
“This tube feeds me.”
“Like a baby?” her younger sister asked.
“Is there chocolate in there?” her other sister asked.
“I can have chocolate milk,” I’d said.
“Aunt Carrie did you find out about phones in heaven?”
Heaven for her was a beautiful place, she just hadn’t grasped it was also permanent. And away from her.
I’d thought a lot about how to answer this question and decided to follow the therapists advice and be completely transparent, which in this case meant admitting I wasn’t actually sure.
“They haven’t invented phones in Heaven yet,” I’d said.
“Is there facetime?”
“No.”
“Did their mum turn off the Wi-Fi code?” my other God daughter asked, clearly thinking of the worst punishment in her world, that Heaven was offline because the Wi-Fi password was being withheld and with enough chores, I could earn it back.
“I don’t think there’s Wi-Fi in heaven.”
She’d locked eyes with me and very seriously said, “Don’t worry Elon Musk will sort that.”
Be Open
Death is part of life. My death will be part of their life. I will vanish, become a memory. As much as I want to, I will not be part of their life.
Introducing the fact I was dying to the children had felt cruel when the therapist had first told us about it. The theory being that it helps the children adjust and gives my friends and family space to share the truth about their feelings, made sense but seemed really difficult.
We ordered every book from amazon on the subject (there are thousands specifically about dying!) and started actively recording all our memories.
I cannot be anyone’s whole world. The terminal disease eating its way through my brain means by the end I will be unable to communicate or even recognise those I love. The chorea creeping into my body now will progressively get worse.
And children notice.
“She can’t play with Lego anymore,” 4 year old announced.
“Her fingers dance remember.” 6 year old answered.
“She can hold the doll.” 4 year old reasoned.
I watched the negotiations, the way they saw my disability as just something I had and something they could work around and smiled. I wasn’t the dying aunt who couldn’t do anything, I was the official teddy holder. For as long as I can.
Google savvy
My eldest Goddaughter was old enough to know what death was. She was also old enough to google. I did not want her googling the name of my illness. I had and it had terrified me. So we all agreed to not say the exact name of my disease, just explain my brain wasn’t doing very well and that I was undergoing surgery.
Create Memories
My death has been all tears amongst the adults in my life, and all memory making with the children. I spend time with them, but have also stepped away slightly, so that new routines form in the wake of my absence. I don’t want every time we do something to be the last.
My news had a ripple effect through the girls who all started asking more death related questions. The therapists all advised that this was healthy and to answer their questions as best we could. Even if the question involved them wanting to hold a funeral for their old iPad.
“Let them bury the iPad,” the therapist sad, “and stop worrying so much. Kids are resilient.”
So, the funeral was scheduled. Socially distanced, in my friend’s garden. We dug a hole in the ground. My littlest Goddaughter hugged the iPad then put it in the ground.
“Now you’ve got that iPad for Heaven,” she said, making all our hearts swell until she added, “you can buy me a new one while you’re here.”
Life includes death, and death includes life. It really was that simple. And I bought her a new iPad (it’s much harder for me not to spoil them now) only my best friend’s garden is quickly turning into a graveyard for all old and outgrown things.
Saying Goodbye
They will go on without me. I won’t be there when they graduate or learn to drive, have their hearts broken or fail an exam. At 18, they will inherit enough money to travel or do something outrageously indulgent. I won’t be there to lead them down a path of fun, but I can leave behind some spending money.
Carrie Jade Williams, Author
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