Ponchos and Park Rides: Talking with our Kids about Stage IV Breast Cancer

"My Mommy doesn't have cancer."

We were two-thirds into our Inheritance of Hope Kendra Scott Legacy Retreat. This retreat was exclusively for families with children who have a parent with metastatic breast cancer.

Each morning we were divided into small groups, the kids by age. In front of London and Quinn were a couple eggs and a Sharpie, and they got to write anything they felt "sick of."

And for all of the kids in the room, their eggs read Cancer.

All of them except mine.

My girls wrote:

Winter.

Not getting what I want for dinner.

When my Mommy yells at my brother. [Guilty]

The counselor working in the group gently prodded one of the girls, "Do you think you would like to write cancer?"

"No, my Mommy doesn't have cancer."

(Covertly checks in with sister across the room) "Oh, my Mommy used to have cancer....But not anymore."

And so. London and Quinn took their eggs outside with the other kids and smashed the dickens out of Winter and the Total Lack of Endless Hotdogs.

When Jason and I met with the counselor to discuss the girls' contributions and takeaways from the retreat, she shared that our girls were delightful (check), well adjusted (score), and relatively oblivious to the role that stage 4 IBC plays in our family (whoopsie).

When she told us about the egg activity, the feelings piled one on top of the other:

Defensiveness...I promise I do belong here. My family does deserve this experience.

Relief...Thank God they aren't as thoroughly traumatized as I feared.

Confusion.

But mostly...where do we go from here?

A few years ago when I first developed signs of heart failure, I was still talking openly in front of the kids about scan results, hopes and fears, and worst case scenarios. Quinn (in preschool at the time) started showing symptoms of severe anxiety. Even laying in bed and screaming that there was something terribly wrong with her own heart. My knee-jerk reaction was to become guarded in front of the kids. Sharing only the highlight reel--the clear scans every six months.

I told the counselor the ages of our kids at my diagnosis (5 months and 3 years). There was a lot of head nodding and mmmhmmm's. Since my diagnosis in 2015, they've grown from babies into, well, children.

"So they don't know any different? They have no memory of your family before breast cancer?"

Correct.

She recommended we use the experience of retreat to open the conversation about cancer in our home in an age appropriate way. Rather than have them railroaded by it later in the case of a reoccurrence.

Piece of cake.

If I'm honest, this was a significant motivator for taking the trip. I mean, Disney World, of course. But also to be surrounded by other families navigating the same waters. To learn how they are charting the course and be welcomed into an extended family that gets it, to receive the tender guidance of professionals who can help us prepare for the hardest to come.

Now that we'd confirmed that our kids were ready to be a part of the conversation, was I ready to handle it with grace and courage? Would I continue to glaze over the truth? Would I feed them a diet of unnecessary fears? And why is this all so hard?

There is no manual for us, I was reminded by a friend, another young mom with stage 4 IBC.

It wasn't long after we came home that I stumbled across this article by a favorite of mine, Glennon Doyle. The Most Valuable Thing a Parent Can Do for Their Kids: One of our toughest jobs as parents is to allow our kids to weather life's storms.

She says, "What if it has never been our job—or our right—to protect our children from every incoming bump and bruise? What if, instead, our obligation is to point them directly toward life’s inevitable trials and tribulations and say, ‘Honey, that challenge was made for you. It might hurt, but it will also nurture wisdom, courage, and character. I can see what you’re going through, and it’s big. But I can also see your strength, and that’s even bigger. This won’t be easy, but we can do hard things.’"

After the retreat ended, our family spent two additional nights in Orlando, using a second day's pass at Universal Studios.

One of the pure joys of this trip was the realization that our Littles love rides. I mean love.

But it all felt like a delicate tightrope as a parent...determining which rides would set their heart aflutter but not terrorize them for years to come.

Tuesday afternoon, the Florida sun was warming us through and we had exhausted our favorites in Dr. Seuss World and The Wizarding World of Harry Potter.

As we made our way through a comic book fantasyland, I was drawn to Popeye and Bluto's Bilge Rat Barges. I have delightful memories as a kid riding with my own dad on river rides at the water parks. This day was hot enough that a few splashes would be tolerable--nice even.

And after all, the kids raved after Splash Mountain at Magic Kingdom.

Quinn and London decided they were interested in riding the Bilge Rat Barges, and we set about the business of inspecting the ride.

There were a few bridges to stand and view the barges bouncing along in the river. A spin and splash, a dip, a drop, a deluge of water....

Wait, are those water canons?

And then! Then I started noticing people getting off the ride. And They. Were. Soaked. Clothes were strewn on the bushes surrounding the exit, dripping in the sun. Feet were bare. Wet shirts and jeans were pasted to clammy skin.

Quinn's resolve was wavering.

Jason bought us ponchos to buoy the cause.

I wish I could tell you I remained calm and enthusiastic. That I emboldened my daughters to take the risk and have this super fun experience with me.

But the truth is, my courage was more like a fish flopping around on a dock, gasping for air, pale belly glinting in the harsh light.

Ugh. Why did I panic?

Was I really that worried about having wet jeans for a few hours? Ruining our sneakers? I guess it had just been a long week of trying to maximize every opportunity, trying to make the best choices for the most fun and least distress. Trying to do all the things and be all the things and spare all the tears.

And I just couldn't anymore.

In the end, London and I rode the Bilge Rat Barges. There was a little compartment to stash our socks and sneakers. The ponchos were a life-saver. Yes, our pants were soaked. Most importantly, we had a lot of fun. She's my thill seeker, to be sure.

I will never forget disembarking my barge to see Quinn's somber face...sitting on a bench wrapped in her bone dry poncho. If I had shown more calm decisiveness, more courage, would she have rode with us?

Probably.

More importantly, how often am I passing my own anxiety to all three of my kids, rather than just buying them a freaking poncho and building them up for the ride?

When we got home, we initiated those age appropriate conversations with the kids about my cancer. Now, while I am doing very well, it is easier to remain calm and confident...to pass that critical peace and courage to the kids. To prepare them for the challenges that may lay ahead. We're avoiding scary language and worst case scenarios. But being realistic. Realistic that there is a high risk that cancer will metastasize further someday. That my doctors are working hard to keep any cancer locked up tight, but that cancer can also by tricky.

I am incredibly grateful that, in their view, cancer is not disrupting their life right now. We'll enjoy this ride while it lasts.

We'll just keep everyone's ponchos handy.