The familiarity of a pandemic

It's been six weeks since our family moved towards what we now call, quarantine life.
A month and a half, already.
That amount was shocking for the kids.

No friends at school.
No coffee chats with the ladies at work.
No commute.

I've been trying all week to come up with the words to explain how we've adjusted as a family. This new life of ours is all at once very, very different.

But also,
familiar.

I know that probably sounds wild, but over the last six weeks I've noticed that many of the feelings other people have expressed during this global pandemic, have been lived in our home before now.

Frustration.
Difficulty with blurred lines between work and home.

For many who now find themselves working from home while supporting the distance learning of their children, many days are ending in tears, arguments and a sense of helplessness. I sit very comfortably in this feeling, however, because I freelanced for nearly five years. Never once during that time did I have boundaries between home and career, often working with a baby on my lap. It was some of the most exhausting work I ever experienced, and while it is truly difficult, I feel well-prepared this time around, for the most part.

Fear.
Intense, debilitating fear.

We know this beast well. We looked cancer in the eye and genuinely wondered if it would take our daughter. Fear of loss and sickness continues to rear it's ugly head when triggered, especially right now. We continue to look it in the eye at a distance, as we meet new childhood cancer families and stand behind, but always part, of their support network. This one requires the strongest mindfulness techniques to combat, from my experience.

Anxious, debilitating worry.
Never-ended rumination about what could happen.

This is our life with anaphylaxis. We legitimately worry about dairy attacking our son the way many describe their ongoing concerns about COVID-19. It's stop-you-in-your-tracks worry, but it's literally our life, every day. It's not going away. And just as the world hopes for a cure, we pray for new therapy to reduce the life-threatening nature of a simple allergen. From experience, anxious thought requires open, honest communication to lessen the rumination.

Isolation.
Being alone and feeling unconnected to others.

Ah, this feeling was also prominent during Brooklyn's cancer journey. Whether it was isolation in a hospital room, or in our home, we felt incredibly detached from our usual community. At some points we stopped reaching out to others because we were just trying to survive. My guess is that this is a very normal feeling when dealing with life-changing health events.

Who knew that five years of freelancing, a cancer journey and living with food allergy, along with a conscious choice to buy less 'stuff' and slow down our family lifestyle, could have prepared us for a pandemic.

But it has.

And I find myself oddly comforted by these familiar feelings. I lean into this crazy, wild time and find myself thinking,
if we survived all of that, we'll get through this too.
And I believe we will.
All of us.

But that doesn't mean it's been easy.

We endured two weeks of very scary germs, in the last six weeks.
Said goodbye to our sweet old dog, Moses.
I have had near daily dreams about scarcity, forgetting important items and not knowing what to do.
I cry, a lot. In fact, every one of us cries pretty regularly.

I MISS HUGGING THE PEOPLE I LOVE.
This one deserves capitals. It's not enough to see their lovely faces, I am a hugger and miss the transfer of love that comes when family and friends embrace for a moment or two, to say they care.

This is an exceptionally difficult time to be alive.
But if I am right, it's one we will look back on someday and feel really proud about.

We're learning a lot about ourselves.
Other people.
Bad habits.
Things we really didn't need.
How the earth can heal.

How will the world awaken from this pandemic?
What will people never go back to doing?
Will people see how much 'stuff' they never needed?
What family values will change as a result of this time?
Will the earth finally receive the respect it deserves?
Will healthcare heroes continue to feel the love through long-lasting changes in the availability of PPE to keep them safe?
Will frontline workers finally get the living wages they deserve?
Will the world idolize the wealthy few less, and the collective community more?

I am so curious.
And optimistic.

And I hope you are, too.
Hang in there. Ride the waves. Anchor in self-care.

We can do this.

When we live in the moment, we breathe

"Mommy! You keep asking me if I feel ok and you are scaring me!"
Cue the tears.

I didn't think much of my words. I didn't think I was panicked, in fact I was pretty sure he was having a slight skin reaction due to cross contamination of dairy.

I was upset though.
My mind was racing... how the heck? Again? What am I doing wrong?

But I didn't suspect anaphylaxis. I wasn't pulling out the EpiPen.

My words scared him.
I scared my sweet little anaphylaxis warrior into a tummy ache.
(which of course worried me even more, as this can be another sign of an allergic reaction).

Sometimes, I forget to be in the moment. Be all in, right now.

This morning I was three stages ahead thinking - what did he touch? How am I failing him? I need to watch for worsening symptoms...

I was living in the future.

If I was living in the present moment, mindful and aware, I would have noticed that I was scaring him. That I asked too many times if he was ok. That he was becoming afraid. That he wasn't showing any signs of it getting worse.

This is the difference that mindfulness makes.

When we live in the past, our kids become weighed down by our own grief, trauma and depression.
When we live in the future, our kids feel our fear, anxious thoughts and trepidation.
Hard to admit, I know.

When we live in the moment, we breathe.

We notice the space between stimulus and reaction.
Formulate a response.
Breathe again.
Notice again.
Act calmly.

Mindfulness is a practice, one I take very seriously. But as you can tell, I am only a student. This practice is a way of life that is always teaching me to turn back to present moment awareness.

Simply noticing the now.

This morning I failed and felt horrible for upsetting my sweet boy.
He was totally, 100% fine.

But trust me, I'll dust myself off and keep trying.
Mindfulness just works like that.

xo

Scanxiety for the child who lives

Once again we find our bags packed and nerves frayed.
Tomorrow is Brookie's next MRI.

All week long we were quietly preparing ourselves.

Saying extra prayers.
Making plans for the boys after school.
Choosing a movie for her to watch.

We talked about Alex, her cancer.
Why she was lucky. Why she wasn't.
She asked for a detailed account of her first and second hospital stays.
A story that never gets old.
Except it does.

I even caught her reading a hospital book to her dolls.

When I woke up this morning, I felt the dread kick in full throttle.
I didn't want to get up.
I felt sick to my stomach.
(I've been in and out of the bathroom all day)

Brookie and I were eating breakfast, when the first wave of tears fell.

She expressed that she didn't want to go, tomorrow.
Didn't like the goggles she will wear while watching her movie.
Feels like the MRI takes too long, and the bed is too hard.
Hates being at the hospital, and driving there.

She cried.
I did, too.

Then I felt guilty, knowing some parents don't have their child alive for this test.
Two years later, and we pray Brooklyn is still cancer-free.
Guilt for the child who lives.

The afternoon moved along, though I felt heavy and sad.
My eyes stung with tears held away from the surface.
My heart pumped with scanxiety.

Cancer still lives in my head.
And the what if's came on strong.

While I was making dinner, Jay and I embraced for a moment.
Both of our hearts hurting in synchronization.
When our eyes met, we shared the same exact fear.

WHAT IF.
What if it actually came back?
What if Alex reappeared?

More tears.

Every single MRI throws us right back to the day we heard those words,
We think your daughter has cancer.

What if this time we weren't so lucky?
What if me telling her after this MRI she has an entire year break is a lie, because there is a mass, a shadow, a lymph node swollen larger than six months ago?

This is scanxiety.
This is survivorship.
This is the reality of cancer.

And yet the guilt, so palpable and thick, reminds me how damn lucky we are to have her in the first place.

Father Fear

Lately I've noticed fear hanging around.

Sometimes it's dark and heavy.
Other times it's quietly casting shadows.

But it's there.
Fear.

It's an interesting emotion. One I didn't always view as such.
Sometimes it looked like anxiety. Or anger. Or sadness.
Deep down, though, at the root of all those other emotions was simply fear.

Father Fear as I like to call it.
The one that has existed forever.
The one I rarely question.
It's so deeply rooted in my life experiences it becomes truth.

I am honestly scared to walk alone, day or night.
I am afraid that any depressed person I know will consider suicide.
I hear the word cancer and I cannot breathe.

Fear.
Big Father Fear.
Paralyzing, heart pounding, dream squashing fear.

Why do I let it win?
Why don't I question it?
Since when does fear trump passion? faith? love?

Truth is, I don't have the answer.
But I know this:

Fear + Courage = Progress

Just last week, for the first time ever, Brooklyn met a big, ongoing medical fear, and showed great courage. She breathed, remained calm and believed she could. And she did.

Major progress.

Five years ago, scared out of my mind, I left my full time job to spend more time with my children.  I found courage to let go of assumptions and ideals and the opinions of others. Thanks to a courageous heart, I have spent the last five years amassing time and memories with my children, without a single regret.

This is massive personal progress on my path to a life well-lived.

So now, it's time.
To have courage, once again.
All of us.
To really live our lives.
Love our here and now.

Engage our passion.
Make our perfect moment.
Manage without the money. time. guarantee.
Embrace the nonlinear path.

Find our courage.
Breathe.
Stay calm.
Have faith.
And love.

The only way to beat Father Fear, is to embrace him.

MRI eve

After school today we came home and the kids had some free time to play. Brooklyn was agitated, and eventually had a meltdown 'because she didn't get to type on google classroom.'

I knew it wasn't about typing a few letters.
She hid in the corner for awhile, and eventually the truth came out.

"I don't want to go to my MRI on Friday!" she said, with tears streaming down her face. "Friday is a fun day at school. We go to the library, trade warm fuzzies and have a spelling test."

My heart fell.

I hugged her for a few minutes but was interrupted by our old dog's urgent bark to go outside. By the time I came back in, she had shut herself in her room. I intended to leave her there as she was calm, but she slowly crawled out of her room and looked up at me, ready to talk.

What happened next made me both very proud, and very sad.
Tonight she shared her feelings with a brave heart.

She said to me, "The cancer isn't coming back mama, because God is in charge and he won't let that happen. I prayed to him mama, my nighttime prayer. He's listening."

I explained that I wasn't sure why cancer existed. That I didn't think God chose her to have cancer, but rather that he was a capable companion along the journey.

"I don't want to have the MRI. It's like having the cancer out again."

It took me a few moments to take that in.
My experience with her 'having the cancer out' ranks far worse than any MRI.

 I asked why she felt that way, if it was because it hurt or was scary.

"Its both, mama. It's both."

"Mom, cancer can grow and grow and grow and grow."

I agreed, but explained that I didn't expect her cancer to return, That if it did, the MRIs help us discover it early so it didn't have to make her really sick. I reminded her that I loved her, and that I just wanted her to stay healthy.

"Mom, what is the name of the cancer I have?"

I stopped her there.
"HAD, honey. You HAD cancer. You do not have cancer anymore."

We worked on pronouncing the name of the cancer she HAD.
Neuro-blast-o-ma, she kept practicing, with a smile on her face.

"I need a hug, mama."

And just like that, she crawled into my lap and we sat.
More silence.

When she chose to speak, she said this.
"Mama, can you write a note in my agenda? Ask if I can write my spelling test on Monday?"

And just like that, fear loosened it grip and we went on with our evening.

This, is MRI eve.
This is cancer's aftermath.

What's the worst case scenario?

I was at a meditation class last month where we talked about fear.

Discussed the way fear can rule our life.

Create unhealthy habits.

Build anxiety.

Fear is one of those feelings that doesn't go away.

It lingers.

Wakes you up at night.

Follows you around all day

The voice of fear is loud.

It bullies you with its scary messages.

Often difficult to manage, fear has the ability to control us.

Our thoughts.
Our health.

Our body.

I have learned this year to notice when fear is present.

My body tenses up. Becomes achy.

My mind races.

I struggle to relax.

For my kids, fear presents itself with a strong need for extra hugs.

Cuddles at bedtime.

Tearful outbursts.

A question was posed, at meditation that night.

What's the worst case scenario?

If I dug to the greatest depth of the trance of fear, what is the worst possible outcome?

Truth is, I cried when I was honest with myself.

Brooklyn's death is my worst fear.

Seeing cancer take her from me is my greatest fear.
Every. single. day.

But wait.

The interesting thing about this exercise is that since I was honest with myself, I have felt less weighted in this fear. The truth helped me realize how much this fear was ruling my every thought and movement throughout the day.

I am now trying to meet this fear with love and courage.

Faith in God.

Radical acceptance.

It's damn hard.
But it's possible.

So, next time you feel fearful, ask yourself:

What is the worst case scenario?
Dig deep, keep asking 'so what' until you really get to the root cause.

You might be surprised how much relief you find in exploring the answer.