Motherhood

Making New Memories, Five Years After

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My #oneword2014 is risk. I took a huge personal risk by auditioning for the first-ever #MetroDetroit Listen to Your Mother show. I was hesitant to audition with a piece about childhood cancer. I was nervous that it was too serious, too sad. Our story is serious and sad. But it’s true and real. Our journey changed who I am and how I see myself as a mother. That is what LTYM is all about. Stories by, of, and about motherhood.

My risk paid off- I was accepted as a castmember and on May 4, 2014 I had the amazing honor and privilege of standing center stage and sharing my story. LTYM was one of the best experiences of my life. It helped me trust other women and other mothers. It helped me remember that there are good and kind people who will hold you when you need it. And, it gave me a boost of confidence as a writer.

Thank you to my amazing husband Sean for driving 85+ mph from MSU graduation to make it in time.

Thanks, Hubs!

Thanks, Hubs!

And thank you to my friends Heather and Kelley for cheering me on.

Thanks to my cheering section!

Thanks to my cheering section!

The official LTYM You-Tube videos will post later this summer. Eek! Until then, this is the full text of my piece. Thank you for reading.

Making New Memories, Five Years After

“On December 12, 2008, our three year old son Luke was diagnosed with stage four cancer and our lives changed forever.

Many of my memories of diagnosis day are crystal clear:

the emergency ultrasound and MRI,

the ugly green sweater I was wearing,

meeting the oncology fellow who would be with us throughout Luke’s 15 months of treatment.

While my husband Sean played in the waiting room with Luke,

I somehow managed to sign paperwork giving strangers permission to pump my son full of poison,

in the hopes that the chemo would kill the rapidly growing cells inside his little body.

I remember holding Sean’s hand as he drove us home in the dark

and we wept in the deafening silence.

December 12, 2013 marked five years since our son’s cancer diagnosis. Like every year, it was a hard day. I just could not pull myself out of being angry and bitter.

The gray skies and snow on the ground are triggers.

The winter air in Michigan always smells the same

empty and raw.

Sean and I called each other a few times during the day. Family sent text messages saying they were thinking of us and sending good wishes.

Later that same night, Luke and his classmates performed “Betsy Ross and the First American Flag.”

Eighty-four second graders had been rehearsing since the second week of school. There was singing, dancing, and historical lessons about Betsy’s bravery and courage. Apparently, it was quite a coup to make a new flag that represented the new world!

Every single second grader had a speaking part and when Luke came up to the microphone to talk about Betsy buying blue ribbon for her flag, I thought my heart was going to leap out of my chest.

I was bursting with pride.

Surely the mom next to me could hear my heart pounding and see my tears. I wonder if she was thinking, “Who is this woman? What an odd thing to be crying about! Betsy Ross isn’t really tear-worthy!”

As I was sitting there trying to film the square dancing and the Virginia reel, a different movie played in my mind. Snippets of the last five years kept flashing before me.

In the movies, photo montages are usually round and sepia.

Childhood cancer memories are jarring and unsettling.

I remember midnight trips to the ER, fevers, watching my baby lose his curly hair, MRIs and X-rays, bacterial infections, the list goes on and on and on.

I wanted everything to pause,

for the world to stop spinning for Just. One. Moment.

so that everyone in that smelly grade school gym could appreciate my skinny, angular boy and his fight against the odds.

I wanted to stand up and shout,

Stop!

Wait!

Do you see that boy in the middle?

That’s my son! My baby.

He is a CANCER survivor!

He is a cancer SURVIVOR!

You have no idea what he has been through! You have no idea how special this moment is!

As Luke’s mother, I know his beginning, his past, and our hopes for his future.

The audience could only see his present.

The farther out Luke gets from diagnosis and treatment, the less he remembers. I am learning that this is a good thing

and how it should be.

His eight year old mind and body have been through more than enough. If he copes by choosing what memories to keep, that is fine.

I will be his memory.

I will always have one eye on the past, remembering all he has endured and another eye on the future, hoping and praying that he continues to get good news.

Luke’s radiation oncologist once told me, “Your hopes and dreams for him aren’t gone. They’re just different.”

Truer words were never spoken.

December 12th will always, always be the day that our son was diagnosed with cancer.

But, it can also be one of the days that he moved on, that he sang and danced with his classmates,

just like an eight year old should.”

Table Read

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This afternoon we had a table read for the Listen to Your Mother Metro Detroit Show. Doesn’t that sound so cool? Table read. Like a TV show. One of the other cast members said, “Oh I love Shonda Rhimes! And now, I feel like her!” Who doesn’t want to be Shonda Rhimes?

We met at Alternatives for Girls in Detroit. AFG is changing the lives of homeless girls in Detroit; and they are the beneficiary of our LTYM ticket sales. You can check out the amazing organization here.   There were 15 women in the room, all there to share their stories about motherhood. We sat in a circle, chit-chatted and ate some lovely donated pastries. Thank goodness I didn’t give up dessert for Lent! Our show’s producers- Angela, Angela, and Jessica– didn’t want us to introduce ourselves too fully. They wanted us to know each other through our stories and to read them the way we did in our auditions. This is also how the audience will experience them at the show on May 4. No frills. Women and their stories will take center stage.

I arrived at the table read today nervous and confident. I was nervous to read my full audition piece in front of my fellow castmates. But, I had been chosen from among 50 other women writers who auditioned so I was a little confident, too. I thought that my story and my writing would be among the best in the group. They were neither of those things. The talent of other writers absolutely blew my face off. The raw emotion that the other women captured using only their words was awe-some. And, I did the ugly cry throughout my entire five minutes of reading. Blerg.

On the drive home and the rest of the evening I have been thinking about the women in my circles. The childhood cancer community is like the PhD community. When everyone else in your circle has what you have or is in the process of getting one (a PhD) or experienced what you experienced (childhood cancer), it is easy to become insular and isolated. Only about 3% of American women has a doctorate. I detest the word “rare” when speaking about children with cancer because I believe it dilutes the power of our message and the need for more research funding. However, the number of children diagnosed each year is small. And with only 350 new cases of rhabdo each year, L’s diagnosis was even more rare. Basically for the last 5 years, I have been with people who are exactly like me. This is not a bad thing. I needed and still need those networks of women, especially my fellow momcologists and student affairs parents. I will always need them. But today I learned that as a result of my closed circles, I have lulled myself into thinking that my story, our story, our journey is unique, or would win some prize for most traumatic or most tragic. Not true.

There is no prize for tragic. There is no hierarchy of suffering or pain or misery or grief. There were women in that room today who shared about infertility, divorce, adoption, losing children, burying their parents. And all of this was going on at the same time I was living my own story. Parallel lives. From December 2008 until March 2010 I kept wondering how the world was still spinning. How was it still going while my baby was suffering so horribly and while S and I were so utterly terrified and exhausted? Turns out, most of the other women in that room today were wondering the same things. About their own lives, their own children, and marriages, and parents.

Jessica, one of our directors, said that this experience has made her more patient and more tolerant. That you really never know what someone else has experienced. That people have reasons for the way they act. Everyone has a story. Every.one.

What a gift, honor and privilege to be in that room today. To my fellow castmates, thank you. You are inspiring. And, I thank you for pushing me to want to be a better writer. I can’t wait for dress rehearsal in April and the real deal on May 4, 2014!

Keep your heart center open

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Most of the time I want to post snark. Snark about students, work, the weather, other drivers…always about others.

I didn’t realize this until today at yoga.

During triangle pose Hannah said, “twist up and keep your neck soft. Keep your heart center open.”

And a voice inside me said, “to myself.” Keep my heart open to myself.

In a heart to heart (ha! No pun intended.) that my mom and I had right after L finished treatment and I graduated in 2010, she said that the hardest part of my moving on would be tolerating others who have not experienced the trauma that we have. That the moving on for me would be marked by moments of exasperation and frustration and impatience. Funny how mothers know us and can get to our very core quicker than any other. I am fortunate that these words were said to me with love and empathy. But, they were still hard to hear, mostly because they are true.

Impatient. That is how I feel most days. Even now, 4 years later. Impatient. Why was that truck parked at the gas station (it’s a gas pump not a parking spot), while the engine idled (duh! gas!), and the driver chuckled on his cell phone? Why is he in my way? Why is he blocking my way to the pump? Doesn’t he know I am already late? Doesn’t he know that I have been through more than him? Doesn’t he know that my son and our family have been through a lifetime of fear and agony and so the rest of life should be smooth sailing?

I thought all of those things in the span of ten seconds this morning, all before 8:15am. That’s a lot of thinking and a lot of brutal self-awareness. I so desperately want to move on from our experience with cancer. Yet at the same time, I wear our experience with cancer like a badge of honor, trying to be an advocate and drum up awareness. I use it like an angry megaphone, when maybe a quieter instrument would be more effective.

In the deepest, truest parts of my soul, I know that there is still healing I need to do. I need to forgive myself for not seeing L’s cancer sooner. Maybe if I had looked harder I would have seen it sooner.

I need to forgive my friend who betrayed me when I needed her the most. I need to forgive myself. Long before she betrayed me, I saw things in her that made me uneasy. I chose to ignore them. I shouldn’t have.

Many of the things that are frustrating me about others, are really things that are unresolved in me. The thing with trauma is that it takes your locus of control and flips it upside down, backwards, and sideways. In childhood cancer world, there is not control. You are a slave to the protocol and absolute neutrophil counts (ANC). We spent 15 months rudderless and hyper-paranoid. It’s exhausting. The re-entry into a world where I do have control (in theory) has been long. It has been arduous work that I underestimated.

I can’t go home again. I am not the same and neither is home.

Today in yoga, a voice told me that my snark is about me and not anyone else. Today in yoga, a voice told me that I need to keep my heart center open- to myself.