On This Day…

Five years ago today, we received a phone call. Earlier that morning I had taken Tessa to the hospital to get her labs drawn. She was on a wait and watch protocol for Myelodysplastic Syndrome, and we knew at some point she would likely transition to leukemia. Many months led up to that moment in our living room where my husband and I sat together while listening closely to the voice on the other end of the phone. She had only said my name and I knew. Before she could finish her sentence, hot tears streamed down my cheeks.

Even though we knew this was coming, we still clung to the little bit of hope that this was all a mistake. That her labs and biopsies were incorrect. That there was a chance she could avoid treatment. It was something we told ourselves on the surface to save face; all the while knowing that this was inevitable. Our daughter had cancer and lives shifted forever.

Her body was covered in petechiae. Her skin was as pale and mottled. She was weak and miserable, crying in our arms. Our baby was sick…really sick. On the phone, the doctor urged us to get her to the hospital immediately. She told us to pack bags for at least a week long stay in the hospital while they ran more tests to figure out the best course of treatment. In the midst of packing, I remembered our six month old baby at daycare and my heart shattered. What would happen to our family?

Before leaving town, I pulled up to our daycare to see our littlest babe while my husband and Tessa waited in the car. Unaware of our troubles, her face lit up with excitement when she realized her mommy was there. As I scooped her up in my arms, I wondered when I would get to see her again. I walked away from that house not knowing if that terrible disease would take her big sister from her. Fear won that day and several days to come.

The hours that followed are now muddled memories. People rushed in and out of our hospital room, throwing medical terms and phrases at our blank faces. They asked questions we didn’t have answers to and said things that didn’t make sense.

There were treatment road maps, complicated documents that required signatures, beeping machines and many unfamiliar faces. The food trays that the nurse had ordered for us were cold and untouched on the counter. I quietly rocked our girl to sleep as she received blood products for the very first time, desperately trying to wrap my head around how we were so swiftly caught in the undertow of our current situation.

This was our life.

A small, but significant chapter, in the big book of us.

Like a puzzle, our pieces remained scattered. Each piece just as meaningful and necessary as the next, despite how confusing and frustrating they were on their own. Sometimes coming back together, only to be broken apart again and again.

But even apart, we were whole; and when all of the pieces aligned just right, we created a beautiful scene.

Every year on this day I recall our heartache and desperation. How I spent the first night on that cold hospital bed, hopelessly bargaining with the man upstairs to let me take her place.

For parents like me, diagnosis day isn’t something we can escape. It may become less obvious in time, but the effects of that day linger. From how we plan and prepare to how we confront and overcome, and everything in between.

I do not relive painful anniversaries for the sake of sorrow, rather to remind me how far we have come. To remember the mountains we moved when climbing them wasn’t an option. To pay homage to moments that changed our course; acknowledging that we absolutely can handle hard things in life.

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Random Reflections

It has been a wild last few months from moving to a new place in the country, a school change for Tessa, juggling the weight of our workload, traveling and making necessary lifestyle changes. All of which contribute to this transitional phase in our lives right now.  Some days are better than others.

But at the end of every day, my heart is full and my faith is constantly restored. It feels good to find contentment in change…finally.  After a long period of heartache and chaos that came into our lives without warning, I am certain that this adjustment was the right move for our family.

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We are healing and growing from our life experiences; gaining perspective along the way.  None of which happens in a day’s time.  And none of it happened immediately after we were no longer confined by a disease that held my daughter–and our family–captive.  In the process we face hardships and frustration and we learn hard lessons.  Recovery is a long process.  When treatment ends, it absolutely does not mean that it is entirely over.  We are never going to be free from this.  Never.  Every single day it remains with us…not because we choose it that way, but because that is just a part of it. This is something many people struggle to understand, and I would not expect that understanding either from another point of view had I not experienced it myself.

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Where I once shook my fists at God, demanding an explanation, I now have peace; appreciating the road less traveled because it has opened our eyes to other things in life that we may have otherwise missed.  It also gave us the chance to really realize our dreams after all was said and done.  To have the opportunity to chase them down and live them out without justification.  It has not been easy. These dreams have been met with resistance on several ends, but I am learning to let it go.

We battle self-doubt, fear and all kinds of what-ifs; but we let it go.  When others use words or actions to try and reduce us, our achievements and even our happiness…we let it all go.  And you know what?  It is amazing how freeing it feels to do so.  To literally not give a damn about any of it; to stay solely focused on what we have going on and to know that nothing can break us down or hold us back.  Because I can’t control how, when or if negativity will approach us; but I can control how I react.  That is the mantra I roll with.

The best thing I do for myself is to spotlight my own dreams, not someone else’s; by living freely each day for myself and not in spite of anyone or anything else.  Life is incredibly short and extremely fragile, and it can change in an instant.  Knowing that, I cannot allow my energy to be exerted on things that only add unnecessary weight on my mind and heart.

We know where we have been and we know where we want to go.  Our feet are steadily planted in a path we are choosing to follow–for the first time in a very long time.  We are days away from the anniversary of the day that changed our lives forever–Tessa’s leukemia diagnosis.  The significance of this day is not lost on me.  I will struggle on that day and the days that surround it; I won’t even lie about that.

As we head into the season of giving and gratitude, this landmark occasion serves as a good reminder for me to pay attention to the present; to look past the trivial things and soak in all that is good and well; recalling how things could have been very different for her…and for us.

Give thanks.  Life is good.