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…

Dear Tessa: Three Years Remission

Dear Tessa,

We celebrated three years remission from leukemia yesterday and tomorrow you will visit your oncologist. Sandwiched between the two days is a trip to get labs drawn. These are regularly scheduled labs to check your TSH (thyroid) and CBC (complete blood count). The latter of the two bringing the most anxiety for obvious reasons. And right now your mama is nervous.

I see you every day and I know you are fine. But knowing what I know about leukemia and your history with it keeps the fear fresh in my mind until I can actually see your lab results on paper. I have fooled myself into thinking that taking you to get lab work done would get easier the further we got out from treatment, but the reality is that it is not easy. Ever. There is no simple, painless, straightforward way to go about drawing blood from a small child.

My heart has raced all morning and my nerves are shot. Experiences such as labs open the door to days passed. It is as though we are suddenly catapulted into unknown again, while at the mercy of things I still lack control over; and hoping with every ounce of me that we can ease our minds once more.

You will put on a brave face because that is what I will ask of you. Holding you tight as you cry, I will tell you how proud I am of you and how much I love you. When you are not looking, tears will run down my cheek but I will remind myself to wipe them away before you notice.

While the anxiety attempts its takeover, I think back to yesterday and how quickly three years have gone by.

How can I feed the fear when you have reached this incredible milestone? 

Today when I told you I was taking you to get blood drawn from your arm, I told you it was okay to be scared and that I would be there. You grabbed my face with your little hands and said, “It’s okay Mom. I can do this! Okay Mom? I can do this! I will be so brave.” 

From a once very sick little girl to a now strong and healthy big girl, you have really grown. You have a t-shirt that say “This Girl Won’t Stop.” There is a reason it is my favorite, and it isn’t because of the gold glitter font. Although that certainly helps.

Three years of growth, change and endless opportunities to live like a kid again. The reward of remission far exceeds the angst I may occasionally feel. Most importantly, you are happy.

Love you sweet girl,

Mom.