Saturday, July 16, 2016

A "Normal" Life...With Down Syndrome

Yesterday, Travis returned home from a business trip to Brazil.  I anticipated doing some blogging while he was gone but every night, after I got the kids into bed, I crawled into my own bed and crashed.  Parenting is exhausting.  Solo parenting is even more so.  So, this morning, when Travis woke up and offered to take all three kids "off my hands," I thought 'Perfect! I'll write a blog post.'  But after staring at my list of prospective blog post ideas, and even calling my mother, I was less than inspired.  

I scoured "The Mighty" because the editorials on special needs frequently fuel my fire one way or the other...nope.  Not today.  Then it occurred to me; while the topic of life with Down syndrome is a huge part of my identity and an enormous passion of mine, life with Down syndrome is  Parenting a child with Down syndrome is just parenting.  And having a sister with Down syndrome is just family.
 Perhaps when a parent first receives a diagnosis of  Down syndrome, there is shock and concern over whether a sense of normalcy will ever return.  With that first year, there is a lot of information to process as one adjusts to the transition from a member of the general/normal/typical (all of these words make me laugh because, really?!) community to a member of the "Down syndrome community." 
 And then somewhere along the way, you find your groove, and you kind of forget about this new version of "normal."  I sit all my kids at the table and feed them the exact same meal.  I remind Merryn not to eat 3/4 of her plate and then "trade' with Lydia who has only finished half of her plate.  I remind Lydia to use her utensils.  And I remind Josie not to blow bubbles in her milk straw.  Someone with Down syndrome sits at my table but the vast majority of the time, I don't even notice it.
 I take Josie to physical therapy once a week just like I take Merryn to gymnastics.  I take both girls to swimming lessons.  Someone with Down syndrome rides in my car but that rarely occurs to me.
 We go outside to play.  Merryn would rather ride a bike.  Josie would rather sit stationary in the Little Tykes red car and sing automotive related songs.  Someone with Down syndrome is in my yard, but that's not usually on my mind. 
 When we visit my sister, she showers my girls with gifts.  She gets down on the floor and plays with them.  She is a doting aunt.  Her Down syndrome diagnosis doesn't change that.
 So as proud as we are of our membership in the "Down syndrome community," and as important as advocacy is to us, we still consider ourselves the family next door.  I certainly wouldn't call us "normal" (snort), but what is normal?  We do the things that most families do.  We eat, sleep, love, fight, forgive, laugh, and live our lives...just like those so-called "normal" families.
 So when we disappear from the blogophere, we're just busy being us.  Down syndrome is still a part of us, but it's woven into the fabric of our family so seamlessly that in any given moment, it's virtually forgotten.  This is not to say that awareness and advocacy efforts will cease to spill forth from this blog.  We are honored to have a platform to help create a positive awareness of what life with Down syndrome is really like.  But the truth is, generally, it's just life.
And we wouldn't trade it for the world.