Survivor

Today is National Cancer Survivors Day.   A day to celebrate and honor survivors everywhere.  A day to plant seeds of hope for future fights.  I thought a lot today about the road to here; and somewhere in reminiscing, I remembered one particular day in Tessa’s treatment.

It was the second week into Tessa’s second round on a bright Saturday morning.  Tessa had been in isolation due to influenza for about a week.  The effects of isolation as well as the effects of chemotherapy were catching up with her.  She needed a break and so did I.  Just as we were both about to reach our breaking points, a volunteer happily waltzed in like the breath of fresh air that we both needed.  I waited as Tessa adjusted to the new face in her room.  Ten minutes later, I grabbed my computer and my phone and headed to the seating area on the main level where the sun shines brightly through the walls of glass.

I found an open chair and set myself up to clear my head.  To my right I could hear the hurried sound of little feet followed by adult steps.  A little boy of about five years zipped by to the chairs across from me.  His mom and dad were just behind.  They set down their things and had a brief conversation while the boy ran circles around them.  They had my attention, but I was pretending to work behind my laptop.

The hospital photographer, adorned with his gear, greeted the family.  They discussed options for pictures and Christmas greeting cards that they could make from the pictures they were about to take.  It was obvious that the boy had been or was a hospital patient.  The photographer set up his things, and he let the little boy take test pictures by letting him push the shutter button.  Mom pulled a small green chalk board out and carefully brought it to her son.  They were ready to take his first shot.

The chalk board was turned my way.  The word “Survivor” written beautifully across the board with a small yellow ribbon above.  I froze.  Survivor.  The yellow ribbon being the symbol for childhood cancer, and the word across it applauding his fight.  He did it.  I could not see his whole face, but I could see from the side how much his cheeks were pushed back from the size of his smile. Dad placed his arms around his wife as they watched their son take some of the most influential pictures of his life.  As tears rolled from eyes, I bowed my head to privately dry my cheeks.  That little boy held up his sign proud.  I thought to myself, he is here.  He is a survivor.

Suddenly that break that I was needing so badly felt too long.  I collected my things and heading back to the fourth floor.  My pace became faster by the step.  In what felt like the longest elevator ride back to our floor, I told myself that someday that would be Tessa holding her own “Survivor” sign.  Someday that would be her family kneeling beside her to take the same pictures.  Someday her smile would stretch that far again.  And someday she, too, would be a survivor.   

And in times of uncertainty and despair, when hope was just out of reach, prayers rushed in.

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Survivor, she is.  Hallelujah and amen.

I thought hard about what it means to be a survivor.  In order to be a survivor, the odds must be beat and the adversity must be toppled. But the word survivor only exists because there are those who do not make it; never because the size of the fight was not enough.  They do not lose because they gave up.  Their fights end this way because they gave everything they had and there was nothing left to go to battle with.  Some say that is when cancer wins.  I say that is when peace beats cancer.  Freedom from this disease comes two very different ways.

While I do not have Tessa captured holding a sign indicating her survivorship, I do have her here with me every single day.  And, that my friends, never escapes me.

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One Year

On Saturday, we will celebrate one year from the day Tessa walked out of the hospital after her final round of chemotherapy.  My little baby bird, blowing kisses and making her way through a bubble parade toward sweet freedom.  Bittersweet freedom, that is.  We hauled our things to the car and headed for home, anticipating that final homecoming and the chance to get our lives back after cancer tried to take it all away.  No more dated events in our family history that would be marked in sadness because of leukemia.  It was the end of an era.

Some warned us about life after treatment; preparing me for the unforeseen part of this fight that can come when all is said and done.  But I wrote it off.  Because I thought what we needed most was to be free of treatment and back together at home as a family of five.  The last twelve months of rebuilding our fragile structure, post-treatment, proved harder than I allowed myself to be aware of. At first glance, we were solid.  We took care of our kids, got right back to work, bought a campsite and dreamed about what our future would be.  We traveled to Disney World and sent Tessa to school for the first time.  But things were different; and we had to learn to cope with the tides of leukemia, even though we successfully brought Tessa home with us.  People would comment “how strong we were,” assuming that our lives had slid perfectly back into place. Eventually my confidence in the words of others faded. Instead of saying thank you, I would smile to save what little face I could bare. Just because it was over did not ever mean than it was really over. There were scars, not visible to onlookers, but present to us.  Life moved on without addressing the damage, but knowing full well that it is there.  That was then.

Relax.  What I know now is that all of this was and is normal.  Totally and weirdly normal.  The kind that is okay, but not okay at the same time.  It is a process, much like the various components of our life. We have to navigate every stage, even the most undesirable.  I am grateful for time that has allowed healing over the last year.  We learned how to love in ways that made us reevaluate the past, present and future.  We did it.  All five of us.  We carried Tessa through the unimaginable.

Families who endure life with disease or sickness often face more than the medical struggles the come along with it, often feeling they cannot talk about the various stages of healing that follow such events.  I personally know that I cannot possibly expect to forget the hardships that pushed my family close to the edge, often stretching us as thin as possible. I do not wish to forget it all either. Because I am still learning how to deal; how to grow from each moment that knocked us down.  From each of those times came opportunities to stand. That was the difference between getting by and getting ahead.  And it still is.

It has been a long year.  We have come so far from our extended days and nights spent in the hospital and the cancer lifestyle.  I never experienced raw humility until I had to beg for mercy on my child every single night to heal her…to save her.  That shifted me.  Even now when I am lost or frustrated or confused, I recall the moments that brought me to my knees. When I am joyful or excited, I do the same.

last chemoWe can never fully prepare for the unexpected.  Trust me, I have tried.  I am relieved to have let that part of me go.  (My husband would most definitely agree.)  Replacing fear with hope and finding the silver lining in every situation has been my saving grace.  I cannot wait to see how we change month after month into the following years, using our personal experiences for growth in the future.

It is early in the week, and I am already quite sentimental.  I remember the day the doctor told us that we could take Tess home.  “Are you freaking kidding me,” I cried to her doctor followed by an obscene amount of tears. Dan picked up his phone and before he could even say hello, I screamed that she could go home.  He arrived an hour later with twenty celebratory McNuggets, french fries and ice cream. Because Tessa’s dad knows the way to her heart.

Thank you all for being on this journey with us.  For each and every person near and far…thank you for letting me be honest and real. Most importantly, thank you for letting us feel love and for showing us how to give love back.  On Saturday I will share Tessa’s letter for March.  World Down Syndrome Day and her one year anniversary from hospital freedom. It will be a whopper and I can’t wait!