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, April 27, 2010

Sailing Free

Twenty Years Ago...by Joyce

Finally after our initial arrival at the Cleveland Clinic on February 7th for Sarah's open heart surgery, we are home. It had been touch and go there for a few weeks. Infections on top of infections, prolonged connections to the ventilator, wet lungs, collapsing airways, plummeting oxygen saturations, additional surgeries to attempt to correct newly identified problems, life threatening blood clots and the dreaded RSV, all kept us in weeks longer than originally planned.

Grandma and Grandpa continually made the drive from their home an hour south of us to visit with Sarah in the hospital. I'm sure there were days they too feared we might not be coming home. Yet today, they were able to hold their grandbabies in the comfort of our home. Somehow the fear and worry of the past two plus months seemed far back in our memories. We were learning to take one day at a time, to appreciate each and every day we had. Just having our family back together allowed us the feeling like we were sailing free.

Oh my, we were so innocent looking in this picture. Our little family of four together once more. The future seemed bright again. John and I had a renewed energy about us. We never questioned that the worst was behind us, we were sure of it.

I had returned to my full time job as the regional director for United Way in Cleveland. I would never have survived the grueling two and half month hospital stay without my extraordinary bosses, Irv Lauber and Bill Kerrigan as well as a fabulous staff in each of the offices I managed. Never once did I worry that I would lose my job and along with it our health insurance. Having a supportive employer made a huge difference in keeping my stress level to a minimum and therefore I was able to focus on helping Sarah to get well.

Looking back, I recognize what a blessing it was that we had this day. A day to enjoy family, to relax, to regroup. It permitted us to take a breath, to replenish our reserves. It gave us hope. I find it so very beautiful that my grandmother's last journal entry ended with this sentence...hope is faith holding our hand in the dark...because little did we know that our days were about to become darker than dark...

4 comments:

Rochelle said...

Look how adorable she looks and so healthy looking after all that time in the hospital.
What a cliffhanger though Joyce from great grandma's journal. I look forward to hearing the rest of the story.

Cindy said...

Such a beautiful family. You all look rested and at peace in these pictures. A great post! I also look forward to the rest of the story!

Lacey said...

Oh look at the cute baby Sarah! Joyce, Sarah looks just like you! Wow!

Tiffany said...

I love these "look backs". BTW...Sarah looks JUST like you Joyce!!!