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, September 29, 2010

No Pain Smile

Look what I found!!! This has me feeling better already. I am not going to be able to get my teeth taken out for a few weeks, so I have to find things that will take my mind off the pain. Camp Rock 2 should do it.

And this pretty sky tonight in Cleveland. It was very orange.

My mom told me I had to clean up my little mess before I could watch my movie, so I picked up all my shoes and my cd player at once. Funny me.

Tuesday, September 28, 2010

So Glad We Agree

by Joyce...I had been to this building one time before. With TJ, when he needed his wisdom teeth pulled a few years ago. It was different then. Today when I walked in with Sarah, I was nervous. I already knew this was going to be no easy task. But I tried to maintain my granite exterior for her sake.

The first thing she saw walking into the buiding was the fountain. She was mesmerized by it. I was fascinated by the turtle statue, perfectly positioned so the water flowed over it and around it, while never getting the turtle wet. It reminded me of the two of us. Me and Sarah that is. I want her to experience all there is to life, yet in a way that she never gets wet. Protected in a way that she never has to suffer or feel pain. But I can't do that. Not really. These darn wisdom teeth prove it.

We entered the waiting room. It was full. With mostly teens and a parent. After all, the removal of wisdom teeth is like a rite of passage in the teenage years. I caught a glimpse of a few staring at us. They eye Sarah up and down and then look at me. After twenty one years, I'm just used to it. Except today. For some reason, I just wanted to yell out, "Stop staring." I'm sure it was because I was nervous. But what was I afraid of? Truthfully, that these teeth are so close to Sarah's airway. Sarah's very damaged airway. If I let myself, I could visualize all sorts of things going wrong. Horribly wrong. Instead, I concentrated on getting all the paper work completed.

Until I turned the sheet over and got to the medical information...
  • heart disease - check
  • asthma - check
  • thyroid issues - check
  • airway issues - check
  • ever experienced trouble coming out of anthesia - check
  • other issues we should be aware of - subglotic stenosis - check

The fear set back in. All of a sudden I felt hot. Burning hot. Then my heart started racing. "Oh c'mon Joyce, we are just talking teeth here," I said to myself. Then they called her name. She hopped up and followed the receptionist back into the treatment room. I quickly scanned the area. My urge was to run. Run fast. The other direction. The counter was cluttered. An oxygen tank was covered with thick plastic. It had not been used in sometime. The floor was not very clean. Old manuals lined a shelf. And to my chair was an IV pump...with a used line and connector still attached. I was horrified.

My nervous state turned to an adrenaline rush. But before I could develop an action plan the doctor came in. He asked Sarah some questions. He put a glove on and examined her mouth. I started to feel panic. C'mon Joyce think. What can I say? I need to get her out of here. He started to ask me a question. I did not immediately hear him. He repeated the question. "Does she take medicine well?" "No. NO. " That's it. My escape clause. "No, she refuses to take medicine orally. She needs an IV line." And then I heard sweet music to my ears, "So sorry, we will not be able to complete this procedure here in the office. She will need to be in the hospital with a full team to support her." "Oh, I could not agree more," I readily replied.

The doctor left the room. Sarah leaned over to me and said she hated the taste of the exam glove in her mouth. I wanted to tell her I hated the taste of the entire experience.

As we got on the elevator, I decided to push the button for the top floor. When we got to the bottom, Sarah decided she wanted to do it again. So we road that elevator like we were in an amusement park. Not much different than our life really. Up and down, up and down, up and down. The funny thing though, it's like the rush of a thrill ride. Your voice is hoarse. Your knees are shaking. Yet, you run back for more...

Monday, September 27, 2010

Oral Surgeon says No Way

Today is Monday. That means our fabric store is closed. But we still went there because late last night Saint Anthony told my mom that the camera was in the basement. I'm not sure who this Anthony is, but he was correct. (thanks Jennifer) And good thing...

because I was cracking up when we were leaving the store. Do you see that? It is a limo pulling in to get gas at Get Go. Anyway, my mom drove me to CEVEC and went in with me. She told my teacher that she knows what has been going on. My teeth have been killing me. Remember my post a few days ago? I told my mom that when I walk into the freezer at Myers to get my supplies it makes my teeth hurt even more. My teacher did not know I had to go into the cooler once I got to the job site. So we decided I would not go there for a few weeks until my wisdom teeth are removed. Then we drove to the oral surgeons office.

Wow...nice building. I have my x-rays in hand just like my dentist told me to.

After my mom filled out all the paperwork, they called me back into an examine room. It's not like the other dentist I go to. There was a lot more equipment in there.

All of a sudden some music came on that I used to dance to in ballet class. I thought that was pretty cool. It made me smile. And then the doctor came in. He asked me which tooth hurt. So I pointed to it. Then he put my x-ray on the light board. "Sure enough Sarah," he said. "It looks like this tooth is pushing the nerve of the other tooth." Then he looked at my mom and they started talking about all my health issues. He said he could not take my teeth out. "No way can I do this out patient," he said.
I must go to the hospital. For a few days. "WHAT!!!!" I need to be where they know me, have an anesthesiologist to put me to sleep, nurses to handle the IVs, and the crash cart just in case. He said he is very worried about my airway. Normally they would intubate a patient in this situation. But because of the scar tissue from the trach, and my history of subglotic stenosis, it is not such a good idea for me. Plus he is worried about how I will take the pain medicine afterwards.
And there is one more problem. The oral surgeon at the Cleveland Clinic just retired. The new doctor is not coming until October. Great. Just great. So we left. Then we road the elevator all the way to the top and back down again. It was fun. Sorta like being at the amusement park.

Sunday, September 26, 2010

What Would You Do?

by Joyce... On September 23rd, we were flying high. Floating up there on cloud nine for sure. The response to the story in the newspaper was tremendous. New customers arrived, many to share stories of members of their family with Down syndrome. Two moms came in to tell me about their baby girls who are no longer on this earth, but are shining stars upon our venture. I was touched beyond words. Sarah was so happy. She carried her copy of the newspaper around all day long. That was Thursday.

Then Friday came. Sarah's daily routine is this:
  • 9:30 she wakes up
  • 9:45 she gets herself dressed
  • 10:30 we depart for the store
  • 10:50 she counts the money drawer
  • 11:00 she goes upstairs to John's office and he feeds her lunch
  • 11:30 she comes back down to the store
  • 11:45 TJ picks her up at the side door to transport her to her job training program

For some reason on Friday, she did not wake up as usual. I went in a few times and asked her if she was ok. I asked if her teeth hurt. She assured me she was fine. So off we went for the store. When it was time for lunch, TJ (John was away at a meeting - sure love having TJ working with us now) came into the store and said Sarah was laying on the futon and did not want to eat lunch. I ran upstairs to check on her and told her she could stay there for the day. She insisted on going to her job. I handed TJ an empty trash can before he left. You know, just in case.

I went back into the store with a pit in my stomach. Something was just off. Something just did not feel right. The crazy thing is, I have been feeling this way since the beginning of this school year. I continue to question why we are sending her to this program when she has a place of employment. Her very own store. You may remember my post from last spring when I found out that this program was recommending that she go to the AAC (adult activities center) upon her aging out at the end of this year. I saw that as being so limiting. I was angry. Mostly because this was the first I had heard this. Her previous teachers seemed more optimistic. But Sarah wants to walk across the stage for graduation in June. So that is the goal. Our eyes are on that prize.

TJ returned to the office and said Sarah was fine by the time he dropped her off. I felt somewhat relieved. Until a few hours later when I started calling Sarah's cell phone at the time she should be home, and she was not answering. My momma antennae was going haywire. I was just about to ask TJ to go home and check on her, when she finally answered. "Gosh mom, I was eating my snack," I heard in her disgusted voice. "I'm fine mom." "Ok Sarah, see you later. This time I really did breathe a sigh of relief. I went back to working on a sample I am making, in between customers.

When I arrived home, an envelope was waiting for me on the counter...

(click on letter to enlarge)

What would you do?

Saturday, September 25, 2010

A Scan of our News Story

The link is not up yet, but here is a scan of our story. You should be able to click on each picture to enlarge it to read the words.

Thursday, September 23, 2010

I Made the Front Page!!!

As soon as I came down for breakfast I saw it. My picture is on the front page of today's newspaper, The Sun Messenger.

There it is in full color. A picture of my mom and me standing in the store. I was so happy I am giddy. I can't wait to show everyone.

My mom was so happy with the way the article is written. A HUGE THANK YOU to Jeff Piorkowski for writing in such a way to accurately portray our story. Once the link is up we will update this post so you can read the entire article.
Here is the LINK

Tuesday, September 21, 2010

Big Pay Out from the Tooth Fairy

My tooth has been killing me lately. I did not want to tell my mom and dad, but I had to. Today I went to the dentist.

haaa...look at this. It is a picture of my teeth. I have to take it with me when I go to meet a different dentist. He has to take my wisdom teeth out. My dad told me that should mean a big pay out from the tooth fairy. Yes!!!!!!!!!

My mom scanned the x-ray so you can see it better. Do you see that little backwards R. Follow that directly to the first wisdom tooth. It is going sideways into my other tooth. That is the one that is killing me. Now if you look really close you can see I only have a half a wisdom tooth on that side up top and no wisdom tooth up top on the other side. Weird.

This lighter version might be easier to see on your computer.

I'll let you know as soon as it is scheduled. My mom thinks maybe we better do it at the hospital, just in case I have a hard time coming out of the anesthesia.

Monday, September 20, 2010

Sweet Innocence

Twenty Years Joyce
This has always been one of my favorite photos of Sarah and me. I have been keeping the photo album that looks back twenty years, beside my desk. I try not to look too far ahead of the date we are currently at, so as to capture the memory for that date, as it comes to me. When I turned the page this weekend and saw this photo, I felt a flood of emotions. Oh how I wish we could have frozen that day. Sarah was becoming a healthier baby. She was happy. I was content. Just a momma and her baby. Savoring in the moment of sweet innocence. Oh how I love that little girl.

Wednesday, September 15, 2010

Saturday Night Sillies

After we closed the store on Saturday, we had to hop in the car and drive to Brunswick to pick up Matt. He was hanging out with his soccer buddies for the day.

When we got there, my mom called him on his cell phone. He said he could see us, but we couldn't see him. And then he said to look up. Do you see him? All the way at the top of the stadium with the umbrella. For some reason, I thought that was so funny. So I started to laugh.

Then he got in the car and sat next to me in the back. He said he had to change his pants because they were so wet. My mom said, "Oh that will be a great picture." And I started to laugh some more.

Then Matt said, "Talk to the hand. No pictures." Now I am really laughing.

Then we laughed some more.

Awe....a cute picture with my little brother. Then my mom started to drive. And I spotted someplace I wanted to go. So she screeched her tires and pulled in...

SONIC...I love Sonic. Today I had a burger and fries. Matt had a coney. My mom wanted to know why the best menu is on the other side of the car...

She started chanting, "Come here desserts, come closer desserts. I want you desserts, but I can't see you desserts." And then Matt and I started to really laugh. Like silly Saturday night laughing. Then the waitress came rolling over in her roller skates with pink wheels. Matt thought she was hot. And then we laughed some more.

Until it was time to dig in. Geesh, I think Matt is starving. Haaa...Matt is always starving.

I had such a fun night with my little brother. Then we had to drive all the way back to Cleveland in the pouring rain. Matt stayed in the back seat with me the whole way. I love him.

Sunday, September 12, 2010

So Many Utah Connections

Just before closing the store on Saturday, we had a visit from our missionary friends. I love when they come. They are always so nice. You might remember last February, when I introduced you to Sister Stewart and Sister Barker. They were both from Utah.

Today, I would like you to meet Sister Webb and Sister Park. Only one of them is from Utah. The other one is from Texas. Can you guess which one? They have been sending lots of their friends from the Church to our store. Everyone is so nice. OH and one of those friends just had a baby. Congratulations Holly and family on your new baby girl!!! We are going to try to visit the Church one Sunday. Today, I was not feeling so good though.

My mom read a great post the other day from another one of our blogging friends, Heather. It told her a lot about being Mormon. She said it is good to learn about other faiths.

And speaking of Utah...Guess what??? The big quilt show where shop owners go to buy their fabric is in Salt Lake City from May 13 -15, 2011. My mom and I are planning on going so we can see some of our Utah friends at the same time. Now if you are from that area, would you recommend staying at the Radisson, Marriott or Hilton hotels? We have to reserve our hotel soon. The quilt market is at the Salt Palace Convention Center downtown.

Oh and here is one more fun Utah connection. We just ordered some fabric from a new vendor...Riley Blake...and guess where they are headquartered? Draper, Utah.

Oh my gosh and guess what? We are expecting a box of new ink from Stampin'Up! tomorrow. And guess where that comes from? Riverton, Utah.

No wonder my mom just keeps talking about Utah. I just figured something out. Utah - Ohio. They both have four letters.

Saturday, September 11, 2010

Sharp Blades and Blood

I woke up bright and early today to go to work. My mom told me it would be a big day for me. She was going to let me cut fabric. First, she told me I had to be very, very, very careful because sharp blades can cut fingers and then there would be blood on the fabric. That would not be good.

We practiced where to place my hands. And then I started to cut.

I did a really good job. I stayed on the edge just like we practiced.

Once my cut was done, I picked up the fabric and started to fold it.

I have to match the corners...

...and then match them again.

one more fold and then it's ready for the customer. I think I did a good job. My mom told me I am never allowed to use the rotary cutter unless she is with me. I think that is a good idea because that blade is sharp...

Wednesday, September 8, 2010

Speechless with TEARS...the HAPPY Kind

from Joyce...As soon as the store closed today, I ran upstairs to the office to make a few phone calls relating to a snag we have encountered with our fabric vendor. I checked my email super quick and spotted a message from Lisa Peele suggesting if I don't already follow a blog, I should. Sadly, we have been so busy with the store that we have not had time to follow any blogs lately. So I quickly closed out of my email account and started to pick up the phone. I was not particularly happy with the person I was about to call and could feel my anger simmering deep within. I started to dial the number to this person's office, then all of a sudden I was overcome with a feeling that I needed to put the receiver down and go back into my email. This time I clicked on the link to this blog and started reading. Within seconds I was sitting in a pool of tears....HAPPY TEARS!!! Please allow me to introduce Sarah...

Sarah Archer

I came running home, never making the phone call as I quickly realized it is so not important, to show our Sarah the picture of her littlest namesake and told her all about the story. She was so excited. She says she has a new little sister coming. Oh I so hope one day we can meet Sarah Archer and her family. Maybe we can even somehow involve our favorite fabric designer, Kate. Oh speaking of Kate, I had the pleasure of having a sneak peak of her next fabric collection coming out in January and it is fabulous!!!

Now please head over to read this incredible story...Embracing Life's Journey...The Name Game

Sunday, September 5, 2010

At Last, A Weekend to Relax

Twenty Years Ago Joyce...

It had been quite a summer. Multiple trips to the hospital to adjust oxygen settings, to resize the trach cannula, and to inflate and dry out tiny damaged lungs. From that early morning in May when Sarah's permanent trach had been placed, she continued to baffle the doctors. Her outward appearance often looked good, yet blood draws, monitoring machines and nurse vitals suggested otherwise. It was at times discouraging and mentally draining to continue to advocate on her behalf.

We learned quickly that ambulance rides to the nearest emergency room were often met with over zealous residents who wished to perform procedures that were most certain to jeopardize the progress that had been made and maybe even her life itself. Articulating our position was at times not easy. So we started transporting her in the car when emergency struck. At least we knew if we could get to the Cleveland Clinic there would be doctors who knew of her complicated medical history.

I had used every last minute of my earned vacation time on these hospital junkets. So as September arrived, I was so looking forward to the long Labor Day weekend.

We all woke up a bit later than usual. Sarah was doing much better and that felt good. After several months, we were finally getting into a groove. John was staying home with the kids, while I went off to work each morning. It was a new role for both of us and we needed time to figure out how it was to work. There had been a few tense nights for sure. We were no doubt dealing with a difficult set of circumstances and plagued by a few people who were not particularly supportive of the situation. Yet, we were managing.
We determined night time air was better for Sarah's respiratory system, so that is when we would take her for walks and bike rides (please know I too am cringing at the lack of a bike helmet-it was 1990-before helmet safety and law enactment). She loved riding on the back of John's bike.

TJ liked to tag along too. He most always just went with the flow of life. Never a complaint, never a tantrum. (well there was that one at Sea World:) It's funny how when looking back, you remember strange little things. Like the creaking noise of those colorful things on the spokes of his bike. One of the many fads of his lifetime. A must have purchase at the moment. Today, few remember them without a picture to remind their memory. A funny memory I am grateful for. Tough years, yet I would not change much about them.
History does have a way of repeating itself. Twenty years later, again we look forward to this long weekend. All summer we have been on high speed. This time a good running though, as we prepared for the opening of our quilt store. For Sarah's 21st birthday. A day we certainly never anticipated seeing back in 1990. TJ is still going with the flow of life. Still rarely a complaint. And likely too old for a tantrum.

Thursday, September 2, 2010

First Ever Daryl Drive Block Party ~ 1990

Twenty Years Ago Today...

Daddy and His Girl

Twenty years ago today...

Sarah's first Daryl Drive block party...
A late breaking add-on: John wants to make sure everyone knows that is a sucker stick in his mouth and not a cigarette:) And that he was not 16 in this picture but 29:):):) and Daryl Drive followers who have emailed...yes I have a lot of photos from this first block party and I will post them later tonight!!!