This week World Down Syndrome Day occurred and I love the celebratory nature of this special day. Kids head to school with colorful, mismatched socks to say, “Being a little different is normal”. Facebook recognized the week offering their “We Got 21” frame for your favorite people with Trisomy 21. Other social media venues lit up to celebrate these special people. Special because, in my experience, most everybody that knows someone with Down Syndrome (DS) possesses a funny and/or a heart warming story about that person. On the other hand, if you simply Google search “Down Syndrome” or “Trisomy 21” you’re likely to get a list of traits, characteristics, descriptions and symptoms; most of these fail to capture the wonderful realities. To this end, I offer paradoxical insights into my life with those with an extra chromosome against the findings of my web search.
Trait 1: Delayed or unintelligible speech (verbal apraxia)
Reality 1: Masters of Communication
The many faces of my girls tell you the words we use make up very little of what we trying to say. Try to match their expressions with the appropriate captions below:
1.Whadya talking’ bout Dad! 3. Eeeeew Dad
2. Stop Dad! 4. Voodoo on you Dad
Trait #2: Congenital Heart Defects
Reality #2: Unconditional Love
I wrote about DS and unconditional love on my other blog, A Patient Nurse. The story featured my sister, Sherita and is available by clicking here. I attribute my love for DS to her and hope (if it’s not asking too much of your time) that you’ll read her story.
Traits #3: Shortened Stature
Reality #3: Larger than Life
Blair just had a bone age x-ray completed. It revealed his skeleton is 4 years older than his chronologic age. This means at 4’9″, he’s done growing. Despite this, he has no problem taking 6’2″ 165 lb me down to the ground in three easy moves:
- Jab to Gut
- Anaconda around my legs
This three-point attack gets me laughing to the point of incapacitation. It lead me give Blair whatever he wants just to get a breath. Typically, I go down to the ground and a Downy pile-up follows.
Trait #4: Slow to Learn (intellectual disability)
Reality #4: Quick to Speak the Truth
If an 11 year-old tween girl tells you you’re ugly:
- She’s trying to hurt your feelings
- She’s trying to start a fight
- She’s looking for a role in “Mean Girls 3”
If an 11 year-old tween girl with DS and a touch of autism, tells you you’re ugly than sorry Dad, you is ugly! The good news is she loves you just the same as if you were Mr. Universe (see Reality #2)
Trait #5: Low muscle tone (hypotonia)
Reality #5: Tower of Strength
DS certainly comes with some setbacks but take a look at Blair. Blair took on open-heart surgery, the loss of his parents, life in an orphanage, failure to thrive and near loss of his life by the age of three. Ten years later our “Hulky” has amazing take down skills, the ability to make everyone smile and faces each day welcoming any challenge. He truly loves life!
This brings me to the “Out” part — my Google search did bring me to a website that raises DS awareness and also raises some uncomfortable questions. At this site, I learned Iceland isn’t able to celebrate World Down Syndrome Day with the same joy as others. Advanced non-invasive prenatal testing (NIPT) is credited with reducing the number of Icelandic children born with DS to near-zero. Photographer Sigga Ella highlights this in her photo essay First and foremost I am (click!). Her portraits of 21 Icelanders with DS are taken in the same setting and backdrop. Their personalities magically shine through and need not a word or caption. Click the link above and scroll through her work. Then, ask yourself the questions below:
- Is the world worse or better for having these citizens in it?
- Are we eliminating a disease or a people?
- What consequences come from reducing chance by choosing choice?
If we look only at the traits, characteristics, descriptions and symptoms of a Google search, we may never see reality.
A reality of beauty, perseverance, laughter and joy!