“Is your belly all better now, Lisa?”, my two year old niece asks daily.
Like me, you may not have your own children, but that doesn’t mean you aren’t important to other people’s children. Whether they’re related to you or not, if you’re involved in a kid’s life and you suddenly disappear, they will notice your absence.
My niece Ava was born 8 days before it was confirmed that my cancer had returned.
I initially returned to my original oncologist at St. Vincent’s in Sydney. It was a waste of time visit, he didn’t offer me anything really. No real advice, no real treatment options. He was a couple of weeks off retirement and you could tell. I heard more about his impending retirement and fishing expeditions on his little tin boat than I heard about options for trying to prolong my life. The only thing he did was refer me onto a radical surgeon and that’s putting it politely. He was a bit like a mad scientist- I basically got the feeling that he wanted to do the surgery to prove to people that he was above all an amazing surgeon and he wanted notoriety and fame.
I visited with a couple of different oncologists and the outcome of most visits was the same. I was told I’d be lucky to get weeks if not months, but I certainly wouldn’t be here in a years time. I only got hope from one oncologist. He was able to give me the confidence and the positive reinforcement that I needed, so I would persist and get as much life out of this crappy situation as possible. Months and weeks just did not sit well with me, and I have always said I just want to make it until Ava gets to big school. She’s three, so we are over halfway there. Stick that on your rod and fish with it, Dr “You’ve only got a few months at best!”
I’ve lived Ava’s entire life with the knowledge I am dying. I never thought I would be here with my niece about to turn three, so I didn’t think I would have to consider how to broach the subject of my illness and my imminent death. I just presumed she would be too young to understand what was going on with her Aunty. But I hear questions now like, ‘Where did all her hair go?’ ‘Why is she always in the hospital and she doesn’t come home with us?’ ‘Why does she give herself needles?’ ‘Why does Nanna give her needles in the bottom?’ ‘Why does she go in the ambulance sometimes?’ ‘Why is your belly so fat now, Lisa?’ (This is now a daily one, as my belly is getting bigger by the week due to drugs). Here we are, at a point that we really need to explain to her what is going on.
Ava sees a lot of things that no adult should have to witness, never mind a toddler. A palliative care ward is scary enough for an adult to walk into, let alone a young child. They’re full of terribly sick people on the verge of dying. They’re the last point of call that patients go to before saying goodbye to the world. You’re surrounded by mostly elderly people who are usually very weak, bedridden, moaning, crying, yelling out in pain, begging to die, terribly skinny, and on deaths door. This is very confronting for adults. But as a child, Ava takes it in her stride.
The other day my sister- in- law Marianne was talking with her mother. She mentioned waiting for an ambulance recently, which took so long that if I was having a tumor bleed I would’ve died. Ava piped up in the background. ‘Is Lisa dying?’
Marianne was taken aback. She didn’t think Ava had been listening, because she was happily playing in the background. She also didn’t expect her 2- year- old child to be asking about her Aunty dying. Marianne responded by saying, ‘Of course not, the doctors fixed her!’ But she soon realised we really do need to explain to Ava what is actually going on. We can’t just keep saying I have a sore belly.
Children are not stupid and they are not oblivious to what is going on around them. They sense distress and when they get to a certain age like Ava is now, they become inquisitive. They may not always understand the answer, but they certainly know how to ask the questions.
Many of the cartoons and movies that children are watching feature death: Bambi, Babe, The Lion King and even Toy Story 3, when they’re all in the incinerator facing death and they sit back waiting. Luckily they’re saved, but once again kids are faced with the reality that death is part of life. Books like Harry Potter have children exposed to death from a very young age… They just don’t understand the reality of it.
Ava has found me writhing in pain on the toilet floor before and had to alert my dad. This is no sight any child should have to see, but this is Ava’s reality- like it is for many other children out there. Ava has spent more time in hospital rooms and wards than she has had hot dinners. She likes to alcohol wipe my injection site before injections, asks if my belly is better every day and dresses up in her Doc McStuffins coat to listen to my chest and tell me to cough. If I’m not at home, she presumes I’m at the doctors or hospital.
So, here’s my advice for those who have to inform their own child, or a child in their life, that an important person in their life is dying. It’s all dependent upon the age of the child. For myself and my family, we are faced with explaining the situation to a toddler. Ava is very perceptive and absorbs information like a sponge (seriously, you drop the s word in front of her, she’ll dob on you quicker than a Real Housewife of New Jersey will flip a table! I’m always getting into trouble).
Over the past few years, Ava and I have gone out at dusk and watched beautiful sunsets. I’ve pointed out the moon and the stars to her when it gets dark, so she has developed an affection and interest in the night sky. At some point, Ava’s Mum and Dad will start to explain all the stars in the sky are people who have passed away. They’re our loved ones, and their job is to look after their families at night. So when I finally pass, a star will be appointed Aunty Lisa.
It will be explained that I am no longer here on earth, but I am up in the sky looking down every night over Ava and our family. I will keep her safe at night time when she is in bed. I love this idea, because so many kids get nightmares and are scared of the dark. If they think someone in the sky is protecting them throughout the night, this will help them sleep. The next step will be Ava going outside and speaking to Aunty Lisa, the star in the sky. She’ll tell me her secrets, her stories or how her day at school was. Anything she wants to talk about, she can talk to me in the sky. This gives me comfort, knowing that my memory will be kept alive.
With older children, I believe honesty is your best policy. I have witnessed a young family speak openly in front of their kids, who were tweens, about their mother in her 30’s. She had bowel cancer and a terminal prognosis. Don’t treat kids with kid gloves, treat them as they deserve to be treated. They’re young adults who are entitled to know their mother or father is not going to be around forever- and unfortunately their ending will be sooner than most.
In the case of a parent with a terminal prognosis, allow your children the chance to embrace the fact that they are going to lose a parent. You need to give them the chance to show that parent how much they truly love them and how much they mean to them, because let’s face it. Kids have a habit of fighting. How many times do you hear a kid yelling out that they hate their parents? You need to let them know that you have limited time, so they can enjoy whatever time they have with you. Imagine them going to bed yelling at you because they were in a pivotal moment playing World of Warcraft, you’re making them go to bed and they hate you and they wish Taylor’s parents were their parents, and they hope that you disappear in the middle of the night, because you’re simply the worst parents EVER!!!!
Then you go to bed and don’t wake up… Is that fair to your child?
I get it, I’m not a parent so where do I get off giving advice about something I have absolutely no knowledge of? You’re right, perhaps I don’t. BUT I do have the right to an opinion and this is indeed mine. You don’t have to listen to it, you don’t have to use it, I’m just putting it out there into the universe. All I want for those poor kids out there who are going to lose a parent or a person close to them, no matter how old they are, is to have some closure and some level of understanding and acceptance before they go through probably the most horrendous thing a child could ever go through- losing a parent or a loved one to this disease or any other.
♦♦♦
Originally published on Lisa’s personal blog:
My doctor came back early from summer vacation this weekend to urge me to seek out a gynecologic oncologist. For a week I’ve been telling myself the lies of hope. The thing is.. even knowing, I’m still being silly and jovial. I have tears in my eyes but I’m making my family smile.
You truly are an inspiration! Your words have hit home for me as I have recently been diagnosed with thyroid cancer. Although the prognosis has not yet been made, as I have to wait until my surgery date before it will be known just how severe it is. I feel like you have answered so many questions I have thought about when it comes to keeping my two children in the loop. You may not be a parent, but you have hit the nail on the head. I only hope that if, God forbid, I am to receive a diagnoses… Read more »
Hi Tara, thank-you for your beautiful words. I’ve never checked this comments section until today, please pm me an update on your current health situation on my TF FB page. I’d really like to know how you are.
Lots of love
Lisa Magill
(Terminally fabulous)