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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Spread The Word To End The Word 2018

Today is the annual Spread The Word To End The Word Campaign day, and I am all about encouraging people to take the pledge. The campaign asks people to remove the r-word from their everyday vocabulary and encourages those who take the pledge to help spread the word of their mission with others. Image result for spread the word to end the word 2018We live in a society where having an opinion is often an automatic right to discount the opinions and feelings of others and, essentially, where compassion is lost in a cloud of arrogance.  Let this not be a lecture.  Let this be a simple message.

These days people are often accused of being over sensitive. Words and phrases are sometimes used without consideration of how those words may affect those around them. After all, isn’t it much easier to just accuse someone of being over sensitive than it is to acknowledge that we may have been responsible for offending someone else in the first place? Sure.

There are a number of ways these scenarios play out when someone uses words like retarded. Some people just let it go; wishing they had the perfect way to respond to someone or wishing they were brave enough to speak up…(typically me). Others confront the situation head-on and let someone know that their words hurt and that they did not like it. Either way, it stings.

When confronted, the response from people who use the r-word varies which can further complicate the situation. They are those who unintentionally used it and would feel terrible knowing it offended someone. Those who insist they didn’t mean like so and so. Those who hear what you have to say, but suspect you’re just being dramatic. And those who refuse to let their free speech rights be taken away by a bunch of whiners. *Sigh*

If choosing another word is so simple, why do we have a campaign each year asking people to simply do so? This brings out the real question…why should people choose another word?

Sometimes we need a reminder to be considerate, courteous, compassionate and polite. It literally costs nothing to be kind. The world could use a lot more of that right now. Small changes like removing the r-word from our vocabulary helps create an inclusionary and accepting attitude of all individuals and it helps support the notion that everyone deserves respect.

Words like retard or retarded might not mean anything to some people, but to many others–like me–they do. I promise I am not stripping anyone of their first amendment rights. I am challenging people to be better for others and for themselves and asking people to choose words that don’t place limits on those with intellectual disabilities or medical needs in an attempt to describe something totally unrelated.

I am not over sensitive. I am just a mom of pretty awesome kid with Down syndrome hoping for a shred of decency and Respect from those I share the world with.

If it really is just a word, then please consider a different one…a better one.

Take the pledge. Sign it. Share it. Remember it.

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This post is comprised of excerpts from past Spread The Word To End The Word posts here on Dear Tessa.