When You Can't Feel the Rain

We'll see you back in two years. Amazing news considering where we've been.

Except it didn't feel that way.

When M was six months old, I noticed that she would slump to one side when I'd sit her up. And when I'd massage her after tubby, I could feel the asymmetry down her spine.  

My inner wisdom pulled me to ask her pedi about it, despite my inner critic telling me I was being dramatic. 

The x-ray showed abnormalities in the lumbar region of her spine. The MRI gave us more detail, reassuring us that her spinal cord was OK for now, but confirmed the malformed bones and missing cartilage.

"Follow up for congenital scoliosis?" the receptionist asked me at check out. Time stood still. "What did you say?" I replied. She repeated herself and I hurried to scribble down the words she was saying - it was the first time I had heard an actual label used to describe what was going on. 

Congenital scoliosis.

It could be benign. It could mean surgery. 

My mind raced.

Would she ever walk? Surgery so young? Would she live in pain? Would she be able to carry a baby? How will she cope with her identical twin sister having no spinal abnormalities? 

Within a few weeks we were back at her 9 month well visit, digesting (read: reeling from) the news of her back when her pedi turned to me and said, "I hear something." Thinking it was fluid in her lungs, my inner critic started chiming in about how I should have taken her in for that cold she was fighting. 

A heart murmur.

It could be benign. It could mean surgery. 

My entire world stopped spinning. My veins flooded with cement. My heart shattered. I wanted to crawl into my bed and make it all go away. 

As my body finished getting both girls dressed, my mind raced in circles. Heart murmur. What does that mean? How could this happen? What did I do wrong? Why just her? How could this be happening? 

Congenital scoliosis. And. Two congenital heart defects. 

Both would require surgery. 

Heart first, then back.

That's what the cardiology team at Boston Children's Hospital told us after they saw her echocardiogram. Within two weeks, she was booked for open-heart surgery. 

This November marks the four-year anniversary of M’s heart surgery. Her heart has healed from her surgery and from the tumultuous complications post-op, including heart failure, heart block and an akinetic right ventricle. At her sickest, the nerves in her heart wouldn’t fire properly - and even with an external pacemaker stimulating the heart muscle, her right ventricle wouldn’t squeeze. She was on the highest level of med support – and attached to two machines that were doing the work of her heart and lungs.

All we could do was wait. And surrender.

Her heart healed.

Miraculously, they said.

We don’t know any of the whys.

Teams of the best and brightest in the world studied her case – cardiologists, geneticists, cardiac surgeons, electrophysiologists, and hordes of students, residents and fellows. They studied her tapes, especially in those moments leading up to her arrest - analyzing all the details.

We still don’t have answers. We may never know.

Letting go of the need for certainty. It’s part of my life’s work. It’s a place I’ve worked so hard to sit in – a place that stirs up a deep level of discomfort in me.

And, learning to sit here has brought me back to a place of deep, deep connection with the Universe – and a freedom unlike anything I've ever felt.

It's a place of letting go. A place of trust. A place of surrender.

Every fall, we head back for a battery of follow up appointments.

Cardiology. Orthopedics. Cardiac Neurodevelopmental Program.

Heart. Back. Brain.

This morning was the annual follow up for her congenital scoliosis.

Four years ago: She needs her heart fixed first.

Three years ago: Her heart needs time to heal.

Two years ago: Surgery when she’s four, if the cardiac team clears her.

Today she's four. Her heart’s been cleared.

Today's news: Her curve has progressed, but longitudinally, she's doing OK. No surgery. Yet.

So, we wait.

On the way out, I found myself feeling disappointed.

Cue up the inner critic. Disappointed? Do you want her to have surgery? What kind of mother wants that for her daughter?

The oven alarms at Starbucks jolted me back - piercing my ears - feeling louder than normal. I looked at hubs, same volume. As soon as I sipped my tasteless coffee, I knew.  I was triggered. And riding a wave.

There’s so much about that hospital that’s changed – and we are not where we were four years ago. M’s heart is stronger. She’s a big sister. I have learned to how to cope and ride the waves of PTSD. Hubs was there with me because we know that’s what works best now. In many ways, we are veterans – and know the ins and outs of navigating the many moving parts of that hospital.

And yet – the smell of the hand soap. The yellow name badges. The parking garage and elevators. There’s so much that remains.

And, we remain.

In the room of uncertainty. Of not knowing. Of waiting.

As we walked outside to our car, I slipped back into the Compassionate Observer - a skill central to my post traumatic growth.

Of course, I wanted surgery. I wanted an answer. I wanted an end to this waiting game. I want all of this to be over.

I dropped the rope, releasing the mental tug-o-war and saw this mother – holding the hand of her beautiful daughter and changing her into her hospital gown.

I see a mother holding Teddy, and staring into her daughter's fear-filled eyes, reassuring her that the machine won't hurt her. 

I see a mother walking the halls of a hospital – halls she’s walked before in her darkest darkness. 

I see a mother reassuring her four-year-old daughter that she’s not broken – sharing that her cells got a mixed-up message when making her bones. And it's not her fault.

I see a mother staring into the bathroom mirror – the same bathroom mirror she stared into when she didn’t know how she could possibly go on without her baby girl.

I see a mother who wishes none of this happened. And who's equally grateful for where she is right now.

I see a mother who has worked really hard to let go of the things she cannot control.

I see a mother trying so delicately and compassionately and unapologetically to answer her daughter’s question – “Why am I the one with all these things?”

 I don’t know why, baby girl.

I don’t know what the future holds.

And, we don’t need to know.

Tonight, when we got home – I knew what I had to do.

Get outside. Move. Stretch. Take a bath. Anchor in gratitude. Feel all the emotions.

Be the Compassionate Observer.

I never know how long the waves will last ~ Here's what I know for sure: beating myself up about being hit by a trigger doesn’t move me forward.

So, tonight – I chose to walk in the rain, even though I couldn’t feel the raindrops hitting my face.

The more I step into this space of not knowing - into this space of uncertainty – the more I realize how much beauty it’s brought into my life.

I’m awake now.

We want all the answers.

We convince ourselves that certainty is comfortable.

Safe.

Secure.

But, is it really?

~

Samantha Livingstone is an Olympic Gold Medalist, transformational speaker, high performance coach and mama of four.  She inspires and empowers others to cultivate the courage, resilience and perseverance needed to let go of perfection and other limiting beliefs so they can live their dream. Samantha candidly shares her battles with her inner critic, depression, perfection, PTSD and parenting as a working mother because she believes in the transformative power of story – and the strength that comes from knowing we are not alone. She is on a mission to pay forward all that she’s learned to help others find joy and live free.  

A mama of heart warrior and mama of twins, Samantha and her husband, Rob, live in the Berkshires with their four girls.  

You can learn more about Samantha at www.samanthalivingstone.com.