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.

Sunday, September 5, 2010

At Last, A Weekend to Relax

Twenty Years Ago Joyce...

It had been quite a summer. Multiple trips to the hospital to adjust oxygen settings, to resize the trach cannula, and to inflate and dry out tiny damaged lungs. From that early morning in May when Sarah's permanent trach had been placed, she continued to baffle the doctors. Her outward appearance often looked good, yet blood draws, monitoring machines and nurse vitals suggested otherwise. It was at times discouraging and mentally draining to continue to advocate on her behalf.

We learned quickly that ambulance rides to the nearest emergency room were often met with over zealous residents who wished to perform procedures that were most certain to jeopardize the progress that had been made and maybe even her life itself. Articulating our position was at times not easy. So we started transporting her in the car when emergency struck. At least we knew if we could get to the Cleveland Clinic there would be doctors who knew of her complicated medical history.

I had used every last minute of my earned vacation time on these hospital junkets. So as September arrived, I was so looking forward to the long Labor Day weekend.

We all woke up a bit later than usual. Sarah was doing much better and that felt good. After several months, we were finally getting into a groove. John was staying home with the kids, while I went off to work each morning. It was a new role for both of us and we needed time to figure out how it was to work. There had been a few tense nights for sure. We were no doubt dealing with a difficult set of circumstances and plagued by a few people who were not particularly supportive of the situation. Yet, we were managing.
We determined night time air was better for Sarah's respiratory system, so that is when we would take her for walks and bike rides (please know I too am cringing at the lack of a bike helmet-it was 1990-before helmet safety and law enactment). She loved riding on the back of John's bike.

TJ liked to tag along too. He most always just went with the flow of life. Never a complaint, never a tantrum. (well there was that one at Sea World:) It's funny how when looking back, you remember strange little things. Like the creaking noise of those colorful things on the spokes of his bike. One of the many fads of his lifetime. A must have purchase at the moment. Today, few remember them without a picture to remind their memory. A funny memory I am grateful for. Tough years, yet I would not change much about them.
History does have a way of repeating itself. Twenty years later, again we look forward to this long weekend. All summer we have been on high speed. This time a good running though, as we prepared for the opening of our quilt store. For Sarah's 21st birthday. A day we certainly never anticipated seeing back in 1990. TJ is still going with the flow of life. Still rarely a complaint. And likely too old for a tantrum.


Adelaide Dupont said...

I definitely remember the coloured spokes as well. They were on my bike by Christmas 1990, I do think.

Ellen Seidman said...

I love your looks back. I hope you all had a wonderful long weekend, and look forward to reading about the quilt store and the big birthday!

Cindy said...

A great flashback, thank you for sharing your lives with us. Hope you have a great Labor Day!

Rochelle said...

So glad this summer was high speed for great adventures not trips to the ER.
Love the new blog look.
Hope you are having a great Labor day weekend.

my family said...

love all of these stories, have a great labor day

Patti said...

That is amazing how much Sarah's new blog header picture looks like her Mommy 20 years ago!! So sweet!

hollyctr said...

Love it! I know how it is with asthma, the night air always does feel better. I had the plastic beads on my bike as well, in fact, Jim and I were just talking about them the other day! I hope you had a great Labor day with your family!

patsy said...

sarah--so glad i found your blog...our maggie was born may 17th, 2009 also blessed with a magic chromosome! i will dream about maggie and i opening up a store together one day! our blog is