Finding Joy in an Ordinary World: Down Syndrome

You have to start at the beginning.

The beginning of my understanding of Down Syndrome was at the birth of my daughter. There are other memories of people with Down Syndrome - memories from my childhood mostly - but they are colored by my then-self, and I can't trust them anymore because my then-self isn't me. So start here -

Fiercely, Protectively, Tenderly

"It is my birthday, tomorrow. Are you scared?"

Last night, my daughter smiled at me from the sofa. "It is my birthday, tomorrow!" Her life, for the past month and a half has revolved around this event. Her birthday. Twenty-two years. Somewhere along the way, I must have told her that the idea of her turning 22 was scary to me. I'm guessing it was more a comment about my age than hers, but it was a comment she remembered.

And now, as I sit at my computer writing, she has gone upstairs to get her tennis shoes - has turned the tv on in the exercise room. Using the remote, she has switched the signal from TV to component, turned on the WII and is following the 45-minute exercise program that came with the Dance IV game.
Who would've ever thought, when the doctor put her in my arms those many years ago, when he said "Have you ever heard of Down Syndrome?", who would've ever thought that my adult daughter would be able to navigate her way through today's electronics and setups?

I had just finished talking to my mom on the phone - in my hospital bed - my then-husband on his way from work. "It's a girl!" I told her. We were so excited - planning when my parents would be able to come out and visit - the birth unexpectedly early.

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Other Posts Starring My Daughter - they're in backwards order from the writing... I will add to the list as more are written.

A Fragile Thing

We are at chapel. My daughter is wearing her favorite blue dress, the one I bought her for a homecoming dance four years ago. She is excited this morning, and has been telling me about her 'friends' on the short ride over, the chaplains and their wives whose names she has learned in the past few months of attending. She tells me that Cody will be out of town, but his wife, Jenn will be there. She tells me she is a leader; she has a job. She tells me she is a good usher.

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I Caught A Fish

"I caught a fish!" Her voice rose effervescently like bubbles in a soda. In her case, red cream soda, sweet, with a single note of vanilla. Uncomplicated. Like my daughter.

"I caught a fish, Mom!" She couldn't contain her excitement, bouncing up and down on the cushion of the pontoon sofa.

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I Am Volunteer

I thought I knew all of my daughter's smiles. You know, kind of like smiles-in-a-closet, hanging in order from the brightest, sunshiny-est, to the bite-your-lip, I'm-trying-to-hide-that-this-is-funny, to the shaky-mouthed, teary-eyed, barely-there shadow of a smile. Just like she hangs her clothes, by color and by type, dark to light, short to long. I thought I knew them all, until I saw a new one. Read More..

Finding the Joy

"Tomorrow, I eat my breakfast slowly."

The refrigerator door is open, my eyes focused on the makings of my own breakfast. I only half hear her. Some people need coffee to wake up; I need food in my tummy to take myself off of autopilot. But something about this sentence stalls me out, stops my hunt for the cream cheese container, and has me look at her. Read More...

It is God

We are standing together, shoulder to shoulder with friends and strangers. The lights are low. I see people in silhouette, arms raised to the ceiling, faces upturned. Like black cutouts against a luminous stage, I see their bodies sway in time to the music. The music is what we came for, my daughter and I. Just the girls. A Christian concert at a local church. Some friends invited us.

My daughter. I glance sideways to see how she’s doing, to see how she is navigating this sea of emotion, to see if her head is above the spiritual waters. This image is frozen like a snapshot on my brain. Eyes closed, face tilted in the dark slightly raised hands in front, palms up to receive. I think about her. This daughter.
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The Schedule

"I love you more," she says as she walks by with the sound of flip-flip-flopping from orange-jewel-sparkle sandals. My daughter rarely ventures into the office these days - these summer days of headphones and HGTV, of books on her lap, and ipad FB messaging. Her favorite place is the end of the sofa. The end with the table, with the lamp, with the space to spread out. Her nerf-dart gun. Her flashlight. Her phone. Her papers. Her space. I think it might be the 21st-chromosome-Down-Syndrome-doubling that gives her this hyper organization. Read more...

Pure in Heart

"Oops, I am messed up."

My daughter is telling me that she forgot to rinse her plate after lunch. It's that am in there that gets me. She inserts those little verbs to be in many of her statements. Usually I find it charming. Today. Not so much.

I don't want her to think she's messed up.

Meet my daughter. She is a 23-year old young woman with Down Syndrome. Read more...

Hearts Like Jesus

A team-building activity. Simple rules: tie a rope at the waist height of the tallest group member between two trees. Each member of the team needs to go from one side of the rope to the other without going under or around. No talking. First group done wins.

Her group didn't win by being first. They didn't win the prize. They won my heart.
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That Want/Need Thing

I watched my daughter do her Zumba this morning - while I trudged away on the elliptical machine. I have to admit, her exercise looked like a lot more fun than mine, what with all the shake-y shake-y going on... She's been doing it on and off for a couple of years now. Of course she follows a very particular routine - I think it's that extra 21st chromosome.

We have to start our day with coffee.

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Beyond Down Syndrome

I am in the office. The room is dark except for the light of the computer screen in front of me. I am reading another birth story, another family surprised in the birth of their son, a son with Down Syndrome. A family whose joy at the birth of their child was tempered by the diagnosis of Trisomy 21. And it is so familiar. And heart wrenching. And I feel tears pool again because this scene, this moment still lives fresh in my memory - 22 years later. Because in that moment of revelation there is loss. Loss of a life expected. Loss of dreams of what could have been. Loss of solid ground.

And then I hear the creaking of the floor above me, and soon the sound of feet on carpeted stairs. And then I feel my daughter's..... Read more...

The World

"It's 6:30 - s'Labor Day - the office is closed."

My daughter stood on the other side of my desk - competing with the view through the window and the blog I was reading on my computer screen. She was already dressed - pink shorts, tie-dyed t-shirt, pink hat - and she was determined to get my attention. Read more...

I wanted to compile a list of good blogs/websites about Down Syndrome. Some of these are parents, some are teachers, some are support groups, some are just plain informational. My daughter has Downs Syndrome. She has taken me and my family on an amazing ride! As I scope out more sites, I'll add them. Let me know your favorites!

http://downsyndromeblogs.org/

http://www.ndss.org/

http://nads.org/

http://downsyndrome.com/photos/

http://www.gillianmarchenko.com/blog/

http://noahsdad.com/

http://yomammamamma.blogspot.com/2012/03/blogs-by-and-about-teens-and-adults.html

http://www.kellehampton.com

4 comments:

ConnieSeptember 23, 2013 at 5:41 PM
My two-year old grandson has Down's and it's been a journey of incredible blessing and challenges!
Noah's DadOctober 2, 2013 at 2:23 AM
Thanks so much for taking the time to write this post, and for including us on your list. Keep up the great work!
JanetOctober 2, 2013 at 4:59 AM
Dear Rick, Thank YOU for your continuing dedication to sharing your journey as Noah's dad (and family) and for sharing resources about Down Syndrome. I can't even begin to tell you how much my daughter has taught me in our own journey - about relationship, about learning, about looking at the world a little differently, about slowing down sometimes... Congratulations on the news about Noah's expected brother! I hope you and your family have a wonderful week. Janet

I know we probably haven't met in person, but I believe that the sharing of our ideas and thoughts, sometimes our hearts and souls, makes us more than strangers. I would like to say friends. Thank you for taking the time to contribute to my little space - I appreciate you.

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