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.

Wednesday, January 13, 2010

Open Heart surgery for our Little Princess!!

Twenty Years Ago Today... as told by mom and Sarah's Great Grandmother...

...I informed my grandmother, Sarah's Great Grandmother that Sarah indeed did have a heart defect that would require open heart surgery. It was a bittersweet moment for me. I had been dragging Sarah from pediatrician to pediatrician trying to find someone who would listen to me. In my gut I knew something was significantly wrong with her, Mother's intuition I suppose, as I had no formal medical training. The first three sent me on my way dismissing my concerns as a new, young mother grieving over a child born with a disability. They told me I needed time.

Yet in reality, time was our enemy. Each passing day, Sarah was growing weaker and weaker. Her little body was working so hard to just stay alive and we didn't even know it. Looking back, I wonder how much longer she would have been able to survive. How many more breaths would she have been able to take? I will never, ever forget the eve of January 11th. It was my turn to pick Sarah and TJ up from Kiddie Company. When I walked into the infant room, she was laying in a little baby carrier on the floor. She looked more like a plastic baby doll than a human infant of five months.

I was tired. It was bitterly cold outside. I wanted to go home and curl up in bed. Instead, I dropped TJ off with John at the house and continued on with Sarah to a Kaiser facility in another county. I had not taken her to the urgent care before, but something, someone, a higher power I believe, directed me there that evening. First the nurse took her vitals, then listened to her heart. She hastily left the room and returned with the doctor. He looked at me, introduced himself as Sig Norr then looked at Sarah. He went straight for the stethoscope and placed it under her tiny flowered shirt. He kept it there longer than the other pediatricians had, painfully long in fact. He slowly raised his head, and said, "I'm sure you know she has a heart murmur, quite significant." I began to feel light headed. I was glad there was a chair behind me.

As I sat, he told me what he heard, asked me some questions about her feeding and activity and then said he felt she needed to be transported to the hospital by ambulance, immediately. It was late. I asked if I could take her there myself in the morning.

On the 12th of January, Sarah and I entered the vast Cleveland Clinic campus. We were whisked back almost immediately for her first echo where the cardiologist confirmed a huge VSD. Sarah did not just have a hole, she was missing almost the entire wall. There was no question that she would need surgery, very soon. But her little body was in distress and surgery was risky. Her lungs were not in good shape. He wanted to try a few medications for a few weeks to see if we could build up her strength, even just a slight improvement would help.

The next day, January 13, 1990 I phoned my grandmother in Unadilla to give her the news. She wrote in a journal that day, Open Heart Surgery for our Little Princess!!

(click on the photo to enlarge) Note: Dick is my grandmother's oldest son, and my father.

I did not know about this journal for many, many years. Sarah was a teenager when it was presented to me. On the left is a picture of me with my grandmother when I was about six or seven. She loved to write. I remember when I would visit in the summer, she had several journals going. Some more serious than others. Sometimes she would let me read them.

There are so many things I appreciate about this specific journal titled, Sarah, Little Princess. First, it gives a time line to Sarah's surgeries. I did not think to do that. One of my few regrets. It also is a beautiful portrayal of the feelings of a Great-Grandmother residing a few hundred miles away in New York. A woman living alone, having lost her beloved husband Fran, a few years earlier to cancer. It shares how she copes through a roller coaster of emotions both having a great granddaughter with Down syndrome and her massive medical ordeals.

My grandmother left this earthy life a few years ago. Toward the end, her memory was failing. On our last visit she recognized me, but thought for sure I was the young girl in the picture above. She talked about life many, many years before I was born. She told me she always dreamed of being a writer. But her family was too poor to allow her that luxury. She just wanted her words to be published. So beginning today, they are.

Note: I will continue to publish her writings throughout the next few months on the dates of her entries.


Heather said...

A princess then.A princess still.Beautiful that you have those priceless writings.A timeless gift for all time.

Two sidenotes:First:Thank you for you comment regarding the truly disturbing stuff going on over my way.Still makes my stomach churn.And Second:I was born,raised and lived for 25 years in Upstate NY,little town maned Vestal and I know Unadilla well!Small world indeed.

Karen said...

That brought the tears! Thank you for sharing.

heather said...

What a gift to have those writings! And I can see Sarah in your cute face with your grandmother. I'd love to have something like that from my grandma. She adored Morgan and was always so supportive and accepting right from the beginning. I look forward to reading the future entries.

Rochelle said...

A princess for sure!!! Happy Heart day Sarah! So glad for that awesome journal what a neat part of your family history. So glad God was with you 20 years ago to guide those surgeons to repair your heart.
Hope you celebrate with a great dessert tonight!

Mary said...

I think that is so beautiful (the writing and the publishing)!

Mary said...


Nan P. said...

Thank you Joyce for this post. I too call Cathal my Little Prince :-) This came to me within a few hours after he was born, just after hearing of his DS and very sick little heart.

Regarding Sarah’s diagnostic, or lack of, on seeing how quickly Cathal’s 3 defects were diagnosed, within hours of birth, I have often felt grateful that he was born in the time and place he was. I often thought at the time: if it had been his mother, or his uncle, he would not have made it. And at 5 weeks old, he almost didn't...

Your mother’s instinct, your gut feelings were correct.

JRS said...

Beautiful post. Amazing difference in how things were done for our kids 20 years ago. This is just another example of how special Sarah is and how much she was destined to be here. Wonderful for you to have those journals and I think it's so touching that you're publishing them.