Down Syndrome Awareness: Embracing Life

*I’m honored to have a guest post from my friend Michelle for Down Syndrome Awareness Month.*

“So God created man in His own image, in the image of God He created him; male and female He created them.”   Genesis 1:27

All photos by Brenda Joy Photography

“For you formed my inward parts
you knitted me together in my
mother’s womb.
I praise you, for I am fearfully and
wonderfully made.
Wonderful are your works
my soul knows it very well.
My frame was not hidden from you,
when I was being made in secret,
intricately woven in the depths of the earth.
Psalm 139:13-15

October is Down Syndrome Awareness month. It’s a month where parents and friends of children and adults with DS want to let everyone know that a person with DS can have a great life. They also want to push for awareness at schools, work places, public nuances and let everyone know that a person with Down Syndrome is a person and should be treated like everyone else, and raising the awareness that no one should ever use the “R” word. Ever. (The “R” word is retarded, if you didn’t already know. You can read my thoughts on the “R” word here.)

I struggle with this month, because I think the people who care about awareness are the ones who have the kids, relatives or friends who have or know people with Down Syndrome. I think awareness has been wonderful for schools and therapy and it has helped people with Down Syndrome to be welcomed and loved in society. Especially back in the 50’s, 60’s and 70’s (even as early as the 80’s), when Down Syndrome was viewed as a disease and parents were told to put their kids in homes, rather than keep them as a part of their family. It’s encouraging what awareness has done for families who have members with Down Syndrome. It HAS given people more of an understanding of what Down Syndrome is. It’s given kids with DS an opportunity to be educated, to get jobs, and to let the public know that people with DS are an asset to society.

There’s a missing piece though when it comes to awareness. This is the piece that I struggle with. This is the part where my heart hurts and it’s hard to breathe.

There is much more prenatal genetic testing then there was many years ago. With a couple of simple tests we can receive a prenatal DS diagnosis as early as 12 weeks, and with that news come choices. A mother can keep her baby even though it was not the baby she expected, or she can have an abortion, with hope that the next one will be without blemish.

I was going to fill this post with shocking statistics about how most of my daughter’s peers were never able to take a breath because of a mother’s choice at the news of their child’s disability, but the more I researched the more I knew that for myself this isn’t about a statistic, it’s about babies dying because they are different and us wanting a life that isn’t hard.

Whose life are we talking about? The life of our child, or ours? At the moment of a diagnosis, doctors and genetic counselors are quick to give the scary information about DS. The data (that word is so impersonal and rude) that make parents fly to the hills in fear. Things like: more likely to get acute leukemia, heart defects, seizures, sleep disorders (such as apnea), gastrointestinal obstruction, frequent ear infections, hearing/vision loss, slow growth, under-active thyroid, or hypothyroidism, late to sit, walk or potty train, slow to speech, and mental retardation. The list is daunting and scary. It’s a list of possibilities and a lot of probabilities. It’s a list I keep in the back of my mind, but don’t want to think about.

Doctors and genetic counselors fail to tell us the good things. The encouraging things. Things like: with each accomplishment we have a little celebration, because it was met with a lot of hard work and determination. With each smile and hug you feel the sweetness and acceptance and love pour through them. Life is very simple in their eyes. They go beyond our expectations. Set a goal and they’ll exceed it. You can always count on a hug. You’ll learn more about yourself then what you ever planned on. Their almond shaped eyes will melt your heart. There is so much more, because their life is sweet and precious and amazing.

It’s the scary things that people hear and believe. It’s the scary things that people base a decision on and believe that their child’s life isn’t worth continuing. They choose the doctor’s suggestion to terminate, because of fear. Fear of the unexpected. Fear of the unknown. Fear of unacceptance. Fear of hard.

I’m not going to sugarcoat anything— it IS scary. The diagnosis is scary. The possibilities and probabilities are scary, but these babies are LIFE. THEY are not scary; it’s the diagnosis that is. These boys and girls were created by God. Their “frame is not hidden” from the One who created them, and the One is with us every step of the way as we navigate through that fear. We’ll realize that our children aren’t much different from us, even with the extra chromosome.

I believe in LIFE. No matter how hard, how difficult, how gut wrenching, how sleep deprived or how much suffering that life will be filled with; that life will still be filled with moments of happiness, moments of laughter, moments of celebration, moments of amazements that will outweigh all of those hard and exhausting moments.  That’s how life IS. It’s hard and beautiful. Difficult and fulfilling. Gut wrenching and funny. Full of sleep deprivation and amazements. Full of suffering and celebration.

This month for Down Syndrome Awareness, I want people to be aware that no matter what life brings you, LIFE is important. Life is meant to be lived. It’s meant to be sweet and filled with grace. It’s meant to be embraced.