It is a real quandary. When potential fatal illness strikes someone in the family what do you tell the kids?
Our natural instinct is to protect our children from all harm – physical and emotional. If only we can shelter them from the storm all will be well.
When Katie was diagnosed with breast cancer in the fall of 2011 I don’t recall our initial thinking about what to tell our sons Gabriel (then 4) and Samuel (then 2).
We were entirely consumed with grown-up thoughts and our efforts revolved entirely around seeking the very best advice and care possible for Katie.
This was very much a natural reaction – as we have since learned. One which falls into the same category as the advice you’re given on the airplane: in the event of a sudden loss of pressure an oxygen mask will descend from the ceiling. Place it first over your mouth and nose THEN on your children.
Only we didn’t have a mask fall from the ceiling.
We had lots of stuff fall on us but no source of immediate relief or insight.
At that time I am afraid our kids were somewhat left adrift and I still get the occasional pang of guilt thinking about it.
What I’ve learned since though is what happened with us is pretty darn typical and nothing to be ashamed of. The only shame would have been not to recognize the reality and continue to ignore what impact the turmoil was having on our boys.
The further reality is this: Samuel, due to his age, was largely inoculated from the experience. Gabe, on the other hand, is and always has been a sensitive boy with great awareness of what surrounds him. This does not negate the importance of being aware of the needs of all children only that sometimes one needs to focus more on the elder.
With that written, while admittedly learning by the seat of our pants, a few things stand out.
While it might be tempting to try to keep your kids sheltered it is simply impossible. Katie chose, wisely and early on, to be open with the kids about what was happening. Face the fact that your kids know something is amiss. Their parents are more remote than before. They are physically absent more. Mommy won’t be able to pick them up as often and she’ll be in bed a lot when normally she would be playing with them, reading stories, or at work. They will notice, if you’re lucky to have such support, that Nana and Grandpa are around the house a great deal more. They will notice Mommy and Daddy being very sad and sometimes even mad. Kids are ultra-sensitive to change. They can’t necessarily articulate their feelings – mostly because they can’t identify them at this age – but behaviours may change. They may do things at school that they wouldn’t normally. Gabe, for example, developed more of an aggressive streak with his school and camp mates.
I recall one day, the first day in fact, picking him up at Appleby where he was attending camp, and the counselor called me over for a private chat. You know that’s never good and seldom does the counselor want to share something triumphant with you! She advised that Gabriel had gotten physical with another child. When I asked what happened she related that while in the lineup for lunch another camper butted in line in front of Gabe. Normally, he’d let that slide. But this time he got physical. He didn’t, as he has been trained by us and his Montessori teacher, use his words. Gabriel put a choke hold on the kid.
When I explained the situation – his mom is sick – the counselor was more empathetic. So here’s another tip – be honest with your kids and let any of the people with whom your child interacts know what is happening in their lives.
We had a couple of similar incidents at his school but with care and attention and understanding that this was his only way of expressing himself we were able to help him adjust and manage himself better.
We have found the writings of Dr. Dan Siegel very helpful and highly recommend his book, The Whole-Brain Child. In it he writes, “…it’s very important that kids learn about and understand their feelings. But it’s also true that feelings need to be recognized for what they are: temporary, changing conditions. They are states, not traits. They’re like the weather. Rain is real, and we’d be foolish to stand in a downpour and act as if it weren’t actually raining. But we’d be just a foolish to expect that the sun will never reappear. We need to help children understand that the clouds of their emotions can (and will) roll on by. They won’t feel sad or angry or hurt or lonely forever.”
Any severe illness will devour time. Innumerable doctor appointments, hospital visits, consultations, treatments, visits to the pharmacy, home-care visits from the nurse, and all of the activities of ‘normal’ life seem to dominate every waking moment. And, when you’re not consumed with real doing you may find your mind totally unfocused and wandering about in the world of chaotic rumination.
Your kids need you.
They need you to feel them.
They need you to see them.
They need you to hear them.
They need you to play with them.
They need you to be silly.
They need you to be you.
And what’s more…you NEED them.
You need your children to keep your perspective. To keep alive your sense of wonder and magic. To ground you. To bring you back from the precipice of doom and gloom. To make you laugh. To make you howl. To make you human. To make you YOU.
These little beasts are perhaps the most resilient creatures on earth and at the same time the most effective medication on offer for both the person stricken and the caresharer. You need only extend a focused hand and you will be rewarded with emotional riches beyond your ken.
Your children, well that is admittedly presumptuous – our children were at times the only bright lights as we traveled through the oppressive tunnel of ignorance and fear of the unknown.While we know they sensed our angst they quite simply refused to allow us to wallow in the mud-pits of despair. In them we came to recognize that regardless of whatever the outcome our lives would continue and it was incumbent on us to do our level best to give them the tools to live full, wholesome lives. Not fairytale lives, but real in-the-moment lives populated with events and people who would enrich them. In this regard we are very and specially grateful to the teachers at Clanmore Montessori here in Oakville, Ontario. (http://www.clanmore.ca) These wonderful, caring people immediately embraced our kids in extra-special care and without them Gabriel and Samuel would have had a vastly different and challenging experience. Yes, we are fortunate in our ability to afford this care but I would suggest that there are people in all communities capable and willing to help. Which leads me to my next point.
Seek and accept help
If you’re reading this you probably already know this.
Your natural inclination may be to never let your children out of your sight.
If people whom you trust offer to give you some relief with childcare accept the offer.
It will be good for them and it will be good for you.
The kids will have a chance to experience something different and you will have a chance to focus on each other without any concerns or guilt.
That is all.
Investigate on-line support and insight
I will be the first to advise that you NOT research your caree’s illness ad-nauseum. While the net is a tremendous source of information it also can lead one down paths that need not be followed.
However, given the subject matter of this posting I recommend the following link:
Some exceptionally good advice here and even if your illness proves not to be terminal the approach set out here is sound.
Your kids are not superheroes. They just seem to be.
There were days when I wished we didn’t have kids.
Yes. It’s true.
Somehow it seemed that it would make things so much more simple.
On a few of the darkest nights I tried to envision a future without Katie. Me. A 60-year old father of a three-year-old and a five-year-old.
As you can well imagine it really doesn’t conjure up positive thoughts.
Until you realize this: your kids are remarkable. They, if given the proper environment and encouragement will be remarkable. They will in total innocence help resurrect you from the depths. They will forgive everything. They will love and they will care and they will be pillars of support strong beyond anything you might imagine.
No, they are not superheroes. But they sure seem to be.
In my group therapy session last week I learned another valuable lesson. It was this: closely observe my children to recognize in them the wondrous qualities of childhood – innocence, wonder, openness – and to learn that even though these were squelched in my childhood by an abusive father I can resuscitate those characteristics in my own life. I can learn to thrive by learning from my children.
If you have ever visited my Facebook page you will know that occasionally I post comments made by my kids under the headings of Gabe’s Gab and Sam’s Sayings. Most often they are remarks that first reduce me to gales of laughter and secondly shock my senses into realizing how brilliant are young minds in their ability to cut through noise to reach essential truths.
Just last week Gabe asked, “Is Nana better?”
I responded that she was although she still had work to do.
Sam then asked, “Did Grandpa make her better?”
I said, yes, Grandpa and a whole bunch of other people, too.
Sam then inquired, “Will there be a party?”
Yes, Sam, there will be a party and in fact we should approach every day like a party.
The genesis of this conversation began almost one month ago. Nana was gardening. She pricked her right index finger on a thorny bush.
Twenty-four hours later she was fighting for her life in Oakville Trafalgar Hospital under intensive care treatment for flesh-eating disease.
It is a truism.
Another is that bad things happen to good people.
How we respond is what differentiates.
How we are supported when it happens is what makes a world of difference.
A long time ago in a land far away, I played the role of Mr. Zuss in Archibald MacLeish’s modern-day adaptation of the story of Job. In the play, entitled J.B*., Mr. Zuss is God. I will freely admit that this was for me a classic case of being miscast and my performance, mercifully witnessed by few, was the absolute worst in my entire acting career. I was horrible.
But since the play is a powerful piece with several good lessons I took away influences that have stayed with me ’til today including this: rather than remaining mired in the great tragedies of his life, J.B. finds a way to move forward by embracing his wife and creating a new life built upon a foundation of acceptance and love. J.B., although not stated as such in the play, decides to live in the present moment. He embraces the notion that thoughts are not facts and begins to live a mindful life.
This all came to mind recently as Katie and I revisited the past 24-plus months of our lives and as we approach our seventh wedding anniversary. Just as Katie’s trek through the dark valleys of breast cancer was enlightened by the support of people both near and far, so was her mother’s recovery from this surreal episode of flesh-eating disease marked by excellence in conventional medicine and the transformative impact of receiving constant care and love from Roger, her husband, Andrew and Bob, her sons, and the touching, hands-on ministrations of her daughter Katie. Additionally, both Katie and her mom were in the thoughts and prayers of people all around the globe – from the jungles of Brazil to the Channel Islands to the teeming streets of Hong Kong and London – both were swathed in the wrappings of virtual support.
Fellow blogger Nicole Sobie, a.k.a., Cancer Dragon, in her most recent posting writes about support. I love Nicole’s writing and her insight which includes this passage: “So my main advice, for those who ask how to help, is just to show up. Don’t worry so much about what to say, what to do.”
“Just show up.”
A key component of living a mindful life is captured in those three simple words and too often we are the last to just show up for our own lives, never mind the lives of others.
Lao Tzu writes, “In dwelling, live close to the ground. In thinking, keep to the simple. In conflict, be fair and generous. In governing, don’t try to control. In work, do what you enjoy. In family life, be completely present.”
Stop and smell the roses. Just make sure you don’t prick your finger!
After you’ve undergone several disruptive episodes where the lives of those you love most are threatened, one might reasonably expect a break from the fates. What we’re learning however is that fate will continue to toss both grenades and bouquets in our path. How we embrace them is what will help us move forward. So Gabe and Sam, there will be a party and Mummy and Daddy will try to ensure that you grow up realizing that every moment we draw breath is a little celebration, that every time we laugh, cry, sigh, and sing we are blessed.
Take the moments to enjoy the simplicity of life.
Shell the peas with zest. Even the mundane and pedestrian events of life are worthy of wonder.
Thanks to all for your continued good will and support.
*J.B. is a 1958 play written in free verse by American playwright and poet Archibald MacLeish and is a modern retelling of the story of the biblical figure Job — hence the title: J.B./Job.
The play opens in “a corner inside an enormous circus tent.” Two vendors, Mr. Zuss and Nickles, begin the play-within-a-play by assuming the roles of God and Satan, respectively. They watch J.B., a wealthy banker, describe his prosperity as a just reward for his faithfulness to God. Scorning, Nickles challenges Zuss that J.B. will curse God if his life is ruined. The two observe as J.B.’s children and property are destroyed in horrible accidents and the former millionaire takes to the streets. J.B. is visited by three Comforters (representing History, Science, and Religion) who offer contradicting explanations for his plight. He declines to believe any of them, instead calling out to God to show him the just cause for his punishment. When finally confronted by the circus vendors, J.B. refuses to accept Nickles’ urging toward suicide to spite God or Zuss’ offer of his old life in exchange for quiet obedience to religion. Instead, he takes solace in his wife Sarah and the new life they will create together.