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.

Saturday, February 6, 2010

Welcome to Club Med

Twenty Years Ago Joyce

Shortly after 12:00, Sarah and I got all checked into the Children's Hospital at the Cleveland Clinic. The floor had recently been given a complete makeover, so everything was shiny and new. I remember looking around and thinking they had done a nice job of giving it a homey feel. Nice pastel colors, adorable wood cutouts around the walls and a sink sized to comfortably wash a baby. I so appreciated that all the rooms were private, although I believed we would be spending such little time on this floor that it hardly mattered. Little did I know this would become our home away from home for many years, Club Med as we lovely referred to it.

For a half hour or so, Sarah explored her new crib while I read the mound of paper work I had been given. Shortly after settling in, John joined us while we waited for the team from cardiology to arrive. We were so unprepared for what was to come. Remember, this was 1990. There was no internet, no blogs, no list servs. We had only met one other family through the Upside of Downs in Cleveland that also had heart surgery. Reference material was sparse.

But that was all about to change. In walked Sarah's cardiologist, Dr. Daniel J. Murphy. (Dr. Murphy is now at Stanford in Palo Alto - curious if any of our California readers have met him?) Dr. Murphy and nurse Rita sat down and thoroughly explained everything that would be happening the next day. They even took us up to see another patient in the ICU to get an idea of all the tubes and machines that would be required to take care of Sarah the next few days.
Then we met with Dr. Eliot Rosencranz her cardiothoracic surgeon. We discussed the risk that we were taking. Sarah was not a healthy baby. Her heart defect had gone undetected for six months. She should have been on medication during that time and would have been had we known. Her lungs had already been compromised. Pulmonary hypertension was an issue. Yet without this surgery she would not survive. Looking back, I realize I was so naive about the dangers that lurked ahead. Yet, I'm so glad I was. Otherwise I might not have been able to hand her over the next morning.

After the doctors left, we sat in the room and watched a little television. They asked us not to walk the halls for risk of picking up a bug or virus that might be floating around. John stayed with me until it was time to pick TJ up from daycare. Then it was just me, Sarah and Minnie Mouse. I spent most of the evening cradling Sarah in my arms. I sang her favorite lullabies, soothed her whispy growing hairs and massaged her fragile body like I had been trained by the therapists. And in the quiet of that room, I prayed like I had never prayed before.


Lacey said...

Sarah, you definitely looked like a baby that needed her heart fixed, you skinny little thing! Your comment on my blog the other day was so cute, thank you!

Adelaide Dupont said...

It would be great if some of the California readers had met Sarah's doctor.

How very loving you were to her, Joyce, at that time.

Heather said...

So love looking back with you.Seeing precious Sarah.This is amazing to take another journey with you and your precious girl.

I am equally amazed at how actually good Sarah looked considering ... my only point of reference was and is, Zoey... who did nothing, for literally 6 months up until surgery.No smiles.G-tube fed.Laid on her back 24 hours a day....never cried.. ever... because she had to hold on to all her reserves.

These children are incredible... look at your girl..look what she went through after her fix,look at her inspiration to us all.

Anonymous said...

I remember saying the same prayer/plea when Sawyer had the same surgery 5 years ago. We knew he had PH and he'd been on drugs. Only a few docs would even consider the surgery. The ones who wouldn't conceded he'd die without it though.

Oh how I remember. I'm hoping in another 15 years, I'll be able to write about it like you and not tear up like I do now.

Love the story.