Did you know that families all around the world are celebrating today? In truth, if we had been asked the same question on March 21st before this year, we would have answered, “Uh, nope.”
Since the addition of a certain someone to our family, we have learned that March 21st is actually World Down Syndrome Day! The date itself is symbolic as it points to the 3 copies of the 21st chromosome in a person with Down syndrome (or Trisomy 21).
While we are only 6 months into our journey in the Down syndrome (DS) community, there have been innumerable opportunities to grow and learn. In true public health nurse and high school teacher style, this means we now have innumerable opportunities to educate our families and friends!
Fast facts about DS:
1. DS can cause several characteristics common to people with DS, such as: low
muscle tone, upward slanted eyes, smaller nasal bones, a palmar crease, a
“sandal toe gap”, and smaller stature.
2. DS is a syndrome, not a disease. Accordingly, people do not “suffer” from DS; it’s
just something they have. Also, it is not contagious!
3. DS is not hereditary. There is one specific kind of DS in which the genetic difference
is carried through from a parent’s DNA, but it is extremely rare.
4. DS is the most common genetic condition in the US, with 1 in every 700 babies born
with DS.
5. The life expectancy for someone with DS 50 years ago was around 18-20 years.
Now? It’s over 60 years!
6. A person either has DS or they do not. DS is not a spectrum. DS affects each person
differently, though it wouldn’t be accurate to say that someone “doesn’t have DS
that bad."
7. People with DS typically have mild to moderate cognitive disabilities, though the
degree to which a person’s cognition and speech are affected vary widely.
8. People with DS can go to college, work, live independently, get married, compete in
beauty pageants, own businesses, etc.
9. People with DS are NOT always happy. They have a wide variety of feelings, just like
any genetically typical person.
10. DS puts people at higher risk for certain medical conditions, like: congenital heart
defects, compromised immune systems, hearing/vision problems, childhood
leukemia and thyroid problems.
Sources:
A mama’s perspective:
Was there some disappointment or fear in my heart when Silas was diagnosed? Yes. I was sad for the things that I assumed would not be possible for my son: developing passions and goals, attending college, falling in love, etc. However, those fears are almost entirely gone now that Silas is here. He has as much potential as any of our kids. He will meet his milestones, though it might take him a little longer. This just gives us more reason to celebrate each one! With medical advances and educational advances, Silas can absolutely go to college is he wants to or hold down a job or pursue a passion.
The fears that remain are generally in relation to his health. Will his heart defects (patent foramen ovale and possible vascular ring) become problematic as he grows? Will his semiannual blood work show he has leukemia? Will his tiny airways result in pneumonia and hospitalization? Just as I cannot control Connie or Abe’s health, I cannot control Silas’ health.
We will just do our best to keep him healthy…which means lots of hand-washing and some increased paranoia during flu season.
For now, I just want people to treat Silas as another member of our family. He is our adorable baby who loves to snuggle and laugh and hates socks.
He is not here to teach us all some cosmic truths. At least not any more than his brother and sister. Parenthood does not allow us to escape growing and learning and struggling—with or without DS. Silas may teach us about perseverance in light of different abilities. Abe may teach us about flexibility in light of his need for routines and specificity. Connie may teach us patience in light of her overwhelming emotions and sass.
Please don’t pity us or apologize to us. Please don't tell us that he's "pretty cute for a Down's baby". Please don't tell us that he'll be "with us forever", as though it's a bad thing.
We have been blessed with 3 incredible children. Silas is not the most special or least special. He is not the most loved or least loved. Silas is our incredible child. Period.
A dad’s perspective: (I’ll keep this short, because that’s how I roll).
I’ve had a few different experiences with Tri-Chromie Homies before Silas. In high school, I got to volunteer with the Special Olympics. Not all of the athletes had Down syndrome, but the ones that did were beacons of joy; not because they were setting any world records with their frisbee tosses, but simply because it was fun. Then, in student teaching, I got to know a student named Theresa. She was more than the smiles I had known before, but she was a personality. She was smart, loved contributing to the class discussion, took pride in filling in her achievement boxes, hated when others were mean, and was a die-hard Angels fan.
And that’s what Silas is to me; he is his own person who will develop his own quirks as we all do. He’s more than the distance between his eyes; he’s someone who will have a favorite ice cream flavor and TV show. He won’t be playing any pro sports, but maybe he’ll be able to rattle off NFL stats like me. He’s more than a speech impediment; he will have important things to say. He is more than a third chromosome; he will be the third Howen kid to beg for Ema’s or Nana’s waffles. He is my son, and Ashley and I will do our best to raise him to be a good man.
