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, February 21, 2010

What does Critical Condition Mean...

Twenty Years Ago Joyce

What does critical condition mean to a two year old? I pondered that question the entire drive home. Today we hit the two week mark. If things had gone as planned, Sarah would be home from her VSD repair. Instead, we had the first gut-wrenching conversation with the doctor that her condition had taken a critical turn for the worse. Up until this day, the doctors had remained positive. Each complication was described as a mere step backward, a minor set-back. Today, the words were not as hopeful. I felt I needed to prepare Sarah's big brother. But he was just a baby himself.

Earlier in the week I had bought him a doctor's kit. I thought the best approach to his understanding her hospital stay might include role playing. And sure enough the first time he saw her, he pretended to give her a shot with the big play syringe and then tried to put the molded plastic bandage on her tiny arm. But now I feared, he needed more information. Greater preparation for the possibility that she might not survive.

I arrived home in time to give him his nightly bath. Then I took him into Sarah's room and we sat in the rocking chair. We looked around and named all the things that she liked to play with. We counted the lambs on her wall border. We sang songs. Then I told him that no matter what happened he would always be my baby. I would always love him just like I would always love Sarah no matter whether she was here on earth or up in heaven with the angels. He turned his sweet head, opened his big brown eyes real wide and told me, "I awwway wove Sarah too." My heart melted as I smiled about the lack of his "l" development at the time.

I will never forget that moment for the rest of my life. I think that was a glimpse into the future. Of course I didn't know it at the time. In that little exchange, TJ let me know that he was in this for the long haul. He was going to be by my side no matter what. And he has. Children, truly God's miracles that permit us to see the beauty of life. I am so blessed.


To Love Endlessly said...

got me crying again Joyce. I'm so impressed with the strength and love within your family. That's that something special that's missing from a lot of families now-a-days. Lots of love, time together, and honesty.

Adelaide Dupont said...

Good on him!

Yes, I reflect on his lack of "I development" and his great sense of Sarah - dead, alive or otherwise.

And that Joyce picture of big hair and glasses. Those were the 1990s!

TJ said...

oh ya, sweet, the superman towel

Cathleen said...

Joyce - love reading your thoughts on Sarah's surgery 20 years ago. We just went through vsd heart surgery with our 3 year old but these days it was a more simple procedure using a heart catheter to close the hole - but the worry and fear was the same - but the risks and complications not as bad. I love reading about you and Sarah & your projects and relationship. Lilly is already my best friend and I look forward to having what you two share as she grows up.