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.

Where In The World Is Down Syndrome Going?

I really should avoid drawing attention to this negative topic today, on my daughter’s sixth birthday; however, it is probably as good a day as any to discuss an issue that is weighing heavy on my heart.

During a few moments of free time this morning and afternoon, I shamelessly scrolled through Facebook to pass some time because…why not? Within a few swipes up, I realized that nearly all of my news feed was saturated with posts about CBS running a story on Iceland and the country’s extremely high termination rate for babies given a prenatal diagnosis with Down syndrome. It was probably more noticeable to me because a large majority of my friends on Facebook are fellow parents of a child with Down syndrome or self-advocates. Other countries like Australia are part of a very similar discussion.

If any of this is news to you, then go ahead and click on the links throughout this post to get up to speed.

I would like to point out that CBS actually used this headline:

“Iceland Is On Pace To Virtually Eliminate Down Syndrome Through Abortion.”

On pace? How nice. Are they racing someone?

The idea of eradicating Down syndrome is a controversial subject, and obviously it does not sit well with me. My college roommate used to always say, “…variety is the spice of life, my friend.” While the phrase used to crack me up, she was absolutely right. Maybe she wasn’t referring to people as much as she was cheap beer selections, but seriously. Since when did we as the human race get to decide that a population of people no longer gets to exist or that those lives have no value? Most importantly, what are the reasons that justify this? 

Six years ago today I sat in my hospital bed, isolating myself from reality while I digested the news of my daughter’s surprise birth diagnosis of Down syndrome.  Like many unsuspecting parents, our world was rocked.  When we were offered prenatal testing while I was pregnant, we declined knowing that we would not change anything about our pregnancy; and that our arms and hearts would lovingly welcome our child.

Did that make receiving the diagnosis less difficult? No. Were we scared? Out of our minds. We had no idea what to expect. We were left with our own drawn up versions of what we thought Down syndrome was based on what we could remember as kids; which–by the way–was basically nothing.

Thankfully for us, our doctor was compassionate and kind. She was all we had at that moment to tell us anything about what it meant to be born with an extra chromosome. While she did deliver some common, basic facts about Down syndrome, she did so in an unbiased and professional manner. She also reassured us that our daughter would live a full and wonderful life with us, and that she was certain that we would all be just fine.

I can only imagine what these parents in Iceland are told their lives will be like with a child like mine and how untrue what they’re told really is. Conflicting, outdated and biased opinions about Down syndrome as a whole. But you know what? It is happening right here too. The horrific diagnosis stories I have been told by mothers here in America continue to blow my mind. I wonder if doctors and parents saw another side of Down syndrome–the human side–would the percentage decrease?

Truthfully I can only speak from my perspective, and I am comfortable with my beliefs. While I am aware that there may be other factors and circumstances such as additional complex medical situations that contribute to the decisions that are made, I wonder about the decisions made to terminate based solely on the diagnosis and whether or not the information that is given is accurate and consistent.

Let’s not forget about the individuals with Down syndrome that are alive. What does this message of “eliminating Down syndrome” say to them? That they don’t matter either? It sure sounds that way.

Patricia Heaton for the win on twitter yesterday:

As parents, we spend a lot of time fighting and advocating for our children. Much to our dismay, we often seek to prove that our children are capable of so much more than the limitations society places on them. We push for inclusion in school and the workplace, we fight for health care coverage and we encourage people to see their value. Now we fight for their right to walk on this earth.

You do not need a heart of gold to raise a child with Down syndrome. But you do need an open mind, the courage to embrace something unfamiliar and the belief that each life has value.

You know what? We are fine. Totally fine. My beautiful girl, charming and wicked smart, does not suffer from having Down syndrome. She never has. Her siblings have not suffered either. Anyone that has met her would tell you how awesome they think she is. Something prenatal testing cannot predict about anyone.

Is raising her easy? Not always. Raising my spirited four year old without Down syndrome isn’t easy. Helping to parent a stepchild also isn’t easy. There are few things about parenting that come with ease. Period. 

The hardest part about having a child with Down syndrome has not been the diagnosis itself; it’s the annoyance of having to explain to she deserves to be here. 

We are weeks are away from sending our six year old off to her first day of first grade in a mainstream school, and today we celebrated her sixth birthday with her friends. In another part of the world, parents are being told their unborn child (who may or may not be born with Down syndrome) does not have a place here.

Where does this end? If Down syndrome is no longer, who else will fall under the magnifying glass? While Iceland is “on pace” to “eliminate,” or kill, Down syndrome, I am on the fast track with a community of others to share that the world is big enough for everyone–including people with Down syndrome.

That’s just my two cents on the matter…