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.

Tuesday, May 14, 2013

A Mother's Dream

By Joyce:

Bright and early Sunday morning Sarah and I loaded the car with empty boxes and headed for our vacation condo in Columbus. The calendar indicated it was Mother's Day, but we had things we needed to do, so I did not give it much thought.  As I pulled onto the freeway, a slight rain had quickly turned to freezing pellets of ice. Strange I thought for the second week in May.  It was not what I expected.  Then neither was this trip we were making.  

Back in 2006, we built a condo in Columbus. Sarah's health was marginal at the time. We recognized that traveling was becoming more difficult, so we opted to create a respite setting in Ohio where she would be close to quality medical facilities.  Over the years, her health yoyoed back and forth. Then in late 2008, it started spiraling downhill.

By early 2009 we were told her lifespan was likely to be counted in months, no longer years. Her lungs were just so fragile. She struggled to breath and was suffering from multiple pneumonias that were not responding to antibotics. She was loosing weight rapidly. Her immune system was suffering greatly. When the doctor suggested it was time to bring in hospice care, I instead left my full-time job to be the one to give her round the clock attention.

She and I often came down to our Columbus get-a-way that year. We had a full arsenal of medications and we duplicated all of her medical equipment.  It was a safe place for us to be and I felt reassured by the hospital just moments away.  Truthfully, it was also a quiet place to retreat. I could hide my worries from the real world and I could cry tears that no one would see.  I would often just sit and daydream about what I would do if Sarah was not so sick.

Miraculously, by early fall of that year Sarah was doing so much better.  The following August, on her 21st birthday we opened the quilt shop.  There was absolutely no way we would have ever been able to predict that when the doctor discharged her for home care in February of 2009, we would not return.  There was also no way of predicting that our Columbus get-a-way would soon become a far-a-way thought.  Sarah and I began to travel for Quilt Markets.  First, Salt Lake City, then Houston.  Portland, Kansas City, and Long Beach are in the plans. 

So we decided to put our vacation condo on the market. It was for sale less than twenty four hours. Today, we were meeting Matt and Nicole, the young couple who purchased it to discuss what furniture they might wish to keep.  We did indeed talk about that, but we spoke more about Sarah. And Down syndrome and her respiratory issues.  We talked extensively about her trach.  It turns out Nicole is a nurse at Nationwide Children's Hospital.  I'm sure that is not by chance. One day she will likely encounter a patient just like our Sarah.  And now she will have the personal reference of the miracles that are possible.  That connection warmed my heart more than words can describe.

After they left, I told Sarah it was time to start packing.  Off she went up the stairs.  Soon she called out that she was ready to go...


In her arms she had gathered some of her dogs. These were the one's that she cuddled with while she slept so much that difficult year. 


She diligently continued to pack up more things.  


Then she sat patiently waiting for me to pack what I needed.  Soon after I suggested we watch a little television before we made the trip back home. 


Sarah of course put on her favorite channel.  Although I too enjoy Disney...


...I guess there is no denying I used the opportunity for a little nap. I love that Sarah decided to take a few pictures while I was sleeping. 


While we were packing, Sarah insisted her dogs ride in the back seat with her.  Just like we used to do so the sun would not be in her eyes, we waited until dark before we left. I was cruising along on I-270 when I heard Sarah yell from the back seat to get off at the next exit.  I smiled to myself knowing exactly where she wanted to go.  And as soon as the car was in park she hopped out the door...


and into her favorite Krispy Kreme store...


...where she was promptly handed a warm donut...


...and we were given a matching pair of hats.  I'm not sure if we will ever be back to this Krispy Kreme again, so I handed the camera to the gal behind the counter and asked her to take a photo.  It will be a good memory of Mother's Day 2013.


Somehow two miss behaving dogs ended up in the front seat for the ride back to Cleveland. Each time I looked over at them, I could not help but think of the roller coaster of a ride we have been on.  For twenty five years now I have had the honor and privilege of being a mom.  I am so very grateful to have been given the opportunity.  There are certainly challenges, disappointment and heartache. But those are so outweighed by the truimphs, celebrations and euphoria. 

It was a peaceful night on the road. I was able to do alot of thinking as I drove. I thought about the future and where we go from here.  I thought about forgiveness.  I thought about healing. But most of all I thought about how lucky I am.


As I opened the trunk of the car, I was startled by the shifting that had taken place of what I packed. Yet, I was awe struck at just what was staring at me. Dream. That's what I am living right now. A dream. A big, beautiful dream.   



10 comments:

Kim said...

Love this, and both of you girls. Proud to know you both! You are a fabulous mom and a constant example to me of the kind of mother and person I hope to be.

Stephanie said...

Such a wonderful post! I have really enjoyed your blog and your perspective. I hope one day I can head to your store in Cleveland too!

my family said...

great post from you, what perspective

Cindy said...

This was an amazing post! So heartfelt, yet jaw dropping at times. Your family has truly been through a lot and I'm so thankful Sarah is well and the quilt shop is thriving! You are blessed!

Nan said...

Wow. I'm crying here. Thanks for THAT mothers' day gift. Oh Sarah! what miracles, what dreams.

Leah said...

Such a beautiful post. Although my girl is only 2, I can relate to so much of what you say. Those feelings are there, no matter how long or short your life with your child may be. So happy you had a lovely time with Sarah. Those moments of reflection are really so precious.

Tiffany said...

I love your stories of Sarah. Miraculous!!!

Carolyn said...

What an amazing post! I do hope you come to Long Beach I would love to have the honor of meeting you. I found your blog about a year ago through Reece's Rainbows and as an avid quilter I have loved reading about your shop too. I have also sent parents of some of my students to the blog to read and be inspired. (I am a speech pathologist).

DREAM!!!!!! Live this wonderful dream

Margaret Bender said...

Joyce, this is beautiful and such a wonderful reminder of how lucky we all are to know people like Sarah who touch us in more ways than we can count. Gary

Hope Anne said...

Thank you for sharing this journey with us . . . very touching blog post. I love how God writes stories . . .