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, December 8, 2010

Deja Vu on the 7th Floor

by Joyce...I wish I could adequately explain the feeling when I walk onto the grounds of the Cleveland Clinic. In simple words, it is like coming home. So much of our life has been spent on this vast campus. I am as familiar with it's many overhead walkways and underground tunnels as most are of their local shopping mall. We have celebrated many holidays in the cafeteria. We have shed many a tear in the privacy of bathrooms and linen closets. Thousands of steps have been logged pacing the floors. But most important, the dedication of many doctors and hundreds of nurses have kept my Sarah alive.

Today, we arrive for an appointment with an oral surgeon. For most, the removal of wisdom teeth is a simple procedure. For us, not so. Sarah and I have our traditions. She loves to stop on this bridge to watch the cars drive under her. Standing here allows me to look directly into the corner room where she stayed for several nights following the placement of her trach. I can still replay in slow motion, the exact moment they let me hold her for the first time after that surgery. It had only been a few days, but it seemed like an eternity. It is also the room where the nurse cut her face with a pair of scissors. The Clinic offered plastic surgery to help hide it. By that point, we had already learned that life itself is more important than superficial scars. So we declined. That scar is still quite evident all these years later. It is close to her ear so her hair usually hides it, but for me it is another visual reminder of the battles she has won.

As we get off the elevator on the 7th floor, I have that deja vu feeling. Welcome to the Head and Neck Institute the sign reads. For years, this is where we would come for follow up visits for the trach. I would get all excited thinking this would be the visit. The one where the doctor says it is time to close it up. Yet, each time he would say just a little while longer. After a few years, I gave up hope of ever getting it closed. Then after almost seven years, a new ENT came into town. A woman. She confidently suggested closing it. She was young. I don't think she had enough history yet, to have experienced all that could go wrong. She closed the trach. And it has remained closed all these years.

Today, the door opened. In walked the new Oral Surgeon. A woman. She confidently said, "Let's get these wisdom teeth out. I don't anticipate any problems." And I believe her, just as I did the new ENT several years ago. She was already familiar with Sarah's history. That's one advantage of having this done at the Clinic where her records are. She will need to be in a full surgical setting and will need to be intubated. That concerns me a bit, as we know anything down the airway could result in being retrached, but I'm hoping enough time has passed for the scar tissue to be less swollen.

We did discuss the time frame. It looks like early to mid January, unless the pain becomes more severe. As we were talking about the calendar, Sarah launched into a discussion about Disney. To the point, she was irritating me. "Yes, Sarah, I know you love Disney," I must have said three or four times.

After the appointment, we sat on the bridge for a while longer. Sarah turned to me and said, "That's the road we take to Disney on Ice." Lightbulb!!! Hello Joyce. Earth to Joyce. That's what she was trying to tell me in the exam room. Disney on Ice is in January. She did tell me that. I just wasn't listening. Of course she doesn't want to miss Disney on Ice. How irritating I must be to her. But she just takes it in stride. Never complains. I have so much to learn from this sweet girl of mine.


Zoey's mom said...

I so understand that feeling of home,in a place that also holds such bittersweet memories.

Glad the surgery is a go Sarah ... your mouth will be so happy about that!After awhile.

And Joyce,I want to share this little story with you.I don't know if you have been over to my last post but I had this incredible experience on Sunday.While I was soaking in this hour or so I saw what you shared about Sarah and Disney,similarly happen twice.One was when they all lined up to begin.One girl kept stepping out of line and the instructor kept asking her to step back in.This happened like 4 times.The very last time,the teacher,put her hand over mouth and said."Susie",you have been trying to tell that we are lined up in the wrong,reverse order,haven't you.All this time!!!"And sure enough,that was the case.

We have so much to learn from all these sweet children,don't we?

Rochelle said...

Such good news! Let us know the date so we can begin praying for her. Oh definitely can't miss Disney on Ice!

one_plustwins said...

We will be praying momma gets that surgery scheduled around Disney on Ice AND that your recovery is short and simple. HUGS Sarah!!!

Cindy said...

We'll be praying for you Sarah. Praying for peace, a quick recovery and that you'll be able to go to Disney on Ice!
Cindy and Beth

Emily said...

I'm so glad your doctor is confident about the surgery. I pray the pain stays minimal until then.

Disney on Ice! How exciting! Post pictures please!

blogzilly said...

There is sometimes a spirit, a vigor, in youthful doctors that, while scary, is also...probably needed. I have a feeling that, like you, you'll be on MY mind when next I walk the grounds, especially on the walkway there.

I especially liked your take on superficial scars. There are real scars, and there are ones that, long term, don't matter so much. Maybe, and I'm not saying for sure that I understand this 100% yet cause I don't.

But maybe, being able to KNOW that there is a distinct and remarkable difference between the two, and being able to appreciate it, is one of the few things that we, as parents of kids who spend their lives in battle, can almost think of as a positive trait within ourselves.

Does that make any sense at all?

Tracy said...

I so know where you are coming from in your comments about Disney. Rachel tries so hard to tell me things sometimes, and I just don't get it, but she will just move on to say words she knows I will understand. I often think she must get so frustrated with me!

Tiffany said...

I can't tell you how many times this has happened to me...Olivia tries to tell me something like that...and I don't get it. Love my girl.

We're going to see Disney on Ice in 2 weeks...can't wait!

kate spain said...

You and Sarah are so fortunate to be in such good hands-and how wonderful that those wisdom teeth will be coming out at last. Please do keep us posted about the date.

What you wrote about connecting-the-dots with what Sarah was telling you about Disney on Ice was so revealing about you both. Sarah for her patience and persistence and you for your commitment to always striving to be a better person to your sweet daughter. Every which way you look at it, you're both lucky. hugs, kate

Karen said...

It's amazing how much we have to learn from these kids of ours. Bless her heart for her patience in dealing with mom. ;)