My Name is Sarah

MY NAME IS SARAH. I am a quilt designer and the sewcial director of Sarah's Sewcial Lounge. I also have a business called Down Right Charming. I sell my quilts mostly on etsy and I make pillowcases to donate to patients in the hospital in memory of my friend Kristen Kirton. I am a young adult living with Down syndrome. I hope you enjoy reading about my life journey.

Saturday, February 6, 2010

A Perfect Chest

Twenty Years ago Joyce

The day started like most others. John drove TJ to Kiddie Company and went on to work. I had asked for one week of vacation from my employer starting this day. We were to report to the Cleveland Clinic at noon for pre-surgery preparation and to meet with the surgeon. I spent part of the morning gathering a bag for Sarah. A few of her favorite toys, her pacifier and a blanket. A bit later I decided to include her music player and her favorite cassette tapes. I had no way of knowing at the time, but this would turn out to be an important component of her recovery.

Before getting Sarah dressed, I made sure to take one last picture of that perfect little naked chest. On this 6th day of February 1990, it would be the last time it would ever be so perfect. Or so I thought. It's funny how twenty years later I now look at the long scar on her chest, the crinkled circles from drain tubes, even the stretched skin where the trach tube once was and see perfect. That's the beauty of writing the story in twenty ten.

To Sarah, this morning was just like every other. She had no idea what was about to happen. I'm smiling as I look at this picture today. I think she was trying to warn me about those flexible little legs and feet. Before long, she would be using that same position to get the annoying ventilator tube out of her throat. I should have picked up on that clue.

One last photo to show off her amazing head control. Something she had been working on with Miss Jackie, her coordinator from the County EI program. It was a position that had become progressively more difficult as her strength was waning from the significant defect in her heart. Her little body was just about out of energy. This was not the ideal time to take her into surgery. We knew that. But she was simply running out of time.


Mary said...

Sarah, I love seeing these adorable baby pictures!

Cindy said...

Great story! I'll be waiting to hear the rest....

Molly said...

This post came up in my google reader right after this one.

It was awesome to read about LC and Jace's "zipper" scars and then click over to see a tiny baby Sarah! Now I'm imagining Jace and LC as grownups. It's fun! (and if you aren't reading Jace and LCs storys you've gotta. They are real cuties!)

Adelaide Dupont said...

Making a bag is awesome.

Hope you guys are watching the Super Bowl right now or whenever it is.

Yes: twenty extra years of life.

Were the music and tapes part of her recovery?

And the "perfect chest".


Great to see LC and Jace.

It's great to imagine people as grownups.

Cammie Heflin said...

On this day 20 years ago I turned 19 and never imagined that in 20 years I would be so blessed to know a precious little girl that was having major surgery at that very same time!

Shelley said...

Ah -- yep - I can relate to that - I too took photoes of Hananh's perfect chest pre surgey - and now I look at her perfect zipper...

Becca said...

This is making me cry, as I remember the night before Samantha's surgery. I have a photo of here perfect chest, too, and of her laughing out loud for the very first time as my husband tickeled her. What a wonderful anniversary for you to celebrate. Sarah is such a gift.