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 journey.

Friday, December 31, 2010

One Final Year End Plea

We just read that all the Angel Tree funds have reached at least $1,000 over at Reece's Rainbow. That is such great news. Most of our readers know that Reece's Rainbow helps families with international adoptions of babies born with Down syndrome. But they also help with other disabilities too.

Meet Katya. She just celebrated her birthday in an orphanage, but with our help a wonderful family in southern Ohio hopes to bring her home before her next one. Please go to their blog where you will find many ways to help them raise the funds they need to bring Katya home.

Are you wondering how we know about Katya? From Amy, one of our customers at the store. She even designed the blog card above. She doesn't live very close to our store even, but she comes in often with her mom. Actually, on Katya's blog there is a link to their etsy store where they sell clothing to fit 18" dolls and guess what? The fabric came from our store. Now how cool is that. We had an amazing week at the store, so we just made a donation to Katya's fund through Reece's Rainbow. Won't you please join us. Thank you. Wishing you all a very happy New Year.

Wednesday, December 29, 2010

Please, Please HELP!!!

There is still time to help...

handsome Hunter
or

baby Blake
or

awesome Andrew
or
cute little red headed Angelina
.
please, Please, PLEASE go over to Reece's Rainbow and pledge to help get all these sweet adorable angels funds up to $1,000. If everyone does just a little, the Angel Tree will meet it's goal. Click HERE to make your donation NOW. We are trying to make this happen by December 31. Thank you.

Sunday, December 26, 2010

A Pillowcase for Grandpa

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Christmas 2010

Me and Grandma
Me and Grandpa. We match.
Yo...How do you like my hat and socks?

I made a pillowcase for Grandpa. He likes it.

Oh Yea!!! Step Up 3!

Santa's Silly Sarah

Saturday, December 25, 2010

Lighting a Candle for Carly

Our hearts and prayers are with Joany, Paul and Carly's family. Bless you dear family.

Wishing you Peace and Joy


Peace is not a Season but a state of Mind
Happy Holidays!!!

Friday, December 24, 2010

A Candle for Carly

Carly is in Heaven. She will be celebrating Christmas with Jesus this year. She had the best smile.

Her family is very sad without her. They decorated her grave site with all her favorite Christmas things. I think this is making her smile. People around the world are lighting a candle for Carly on Christmas day at 2:00 p.m. Please join us by lighting a candle too and saying a prayer for her family.

Thursday, December 23, 2010

The Celebration

Yep, my Dad was really surprised when he came into his office.

First he had to walk through the doorway with all the 50's hanging down.

Then there were cards and a cake and balloons.

Looks like someone is trying to work. Guess who?

Haa my big brother TJ. He is always right upstairs from the store. I really like that. Happy birthday Dad. Now I have to get ready for Santa Claus.

Wednesday, December 22, 2010

Happy Birthday Daddy

Today is my Dad's birthday. It's a big one too. We have his office decorated with 5-0's everywhere. He is going to be surprised when he gets there.

We gave him one of his presents early. It is a Little Giant. It is pretty neat. Just like the ads on tv. Happy Birthday Daddy!!!!!

Friday, December 17, 2010

My Visit to Apply for Medicaid

Today we got up early to go back to the same place we went yesterday. My mom was feeling much better about it today. I could tell because she was singing in the car while she was driving.

The security guards remembered us so they let us come right through even though my mom was buzzing again.

I was really happy when I discovered there was no one in the line today. We walked right up to the window. The same lady was there and she said, "Hi Sarah, I'm glad you came back today."

We sat down for a minute and then a really nice woman came out to get us. Her name is Adrienne and she will be my case manager. I really liked her a lot. So did my mom.

We went back to her desk and she asked me some questions. I had most of the answers which really surprised her and my mom. They both told me I am a really smart girl. Then I got to coughing so Adrienne got me some water. She was really nice. I had to sign a few forms.

And then I got to sign my name on this neat little pad. As I was writing, my name appeared on the computer screen. I thought that was pretty cool.
Before we left, I got approved for Medicaid with no spend down. Adrienne said that was good. My mom said it will help pay for my doctor visits and my asthma medicine.
That was easy. We were only there about one hour. That leaves time for lunch before we had to go back to the store. Oh do you wonder who was watching the store? My dad and brother. They are learning to cut fabric. Can you believe it.

Thursday, December 16, 2010

Medicaid Stress

by Joyce...Sarah and I got up bright and early this morning. It was the day of our personal interview to enroll Sarah with Medicaid. I've mentioned before that this one subject is the source of great stress for me. I doubt that I can articulate with words why I have been avoiding this for so long.

But the cold hard reality is this...my Cobra benefits went from $1470 per month in July to $2245 and as of January 1 they will increase to $2473 per month. That is $29,676.00 out of pocket per year for health care. No wonder there is never any money in our checking account. Actually, the only reason we still have Cobra is Sarah. Did you know that if you are on Cobra and you have a family member with a disability you can extend your benefits an additional 18 months? Yes that's correct. The kicker...for that privilege you get to pay 150% of the premium.

Still, that little perk will run out eventually. So we will have to find health insurance on our own soon. Which means we will have to go through underwriting and with that discriminating diagnosis of 758.0(Down syndrome) we will be in tier 22 again. And the premium for that will likely be well over $3500 a month. At that rate, we will have to sell the house just to pay for health care. So....off to the welfare department we go...

...only the welfare department isn't called that anymore. No siree, it is now the Neighborhood Family Service Center. A rather attractive looking building I decide. Sarah and I walk in as naive as two young pups. The first thing that greets us is a big ole metal detector with three armed security officers. Not intimated in the slightest, Sarah hands them her purse then walks through rather proudly.

I'm not so lucky. Buzzzzzzz...goes the alarm. One officer hands me a basket for my keys. Buzzzzzz....it goes off again. "Do you have a watch on?" I'm asked. Off it comes. Buzzzzzz....once again. "Any metal on your belt?" No, I'm not wearing one," I meekly reply. The guy looks me up and down, down and up and back down again. "Must be the zipper on your boots." Oh great, I say to myself, as I look for the nearest chair to sit to take them off. I know if I bend down to take them off I'll faint for sure, my body is already giving me not so gentle reminders that it is feeling the stress of being here. "Go ahead, come on in. Don't worry about the boots," I hear in a deep booming voice.

Now that we are in, what happens? I look around. No clear directions in the form of signs, so I take the letter back over to the security guards and ask where we should go. "Stand in that line over there," he directs. Great. The line with twelve people standing before me. I find a place for Sarah to sit and then take my place. The longer I wait, the hotter I get. So I start to peel off the layers until I'm down to just my shirt. After about twenty five minutes, I've reached the front of the line. I wave Sarah over. "Next," we hear from a lady down the way.

Sarah confidently walks up and hands the woman her state ID. Then the letter. The woman starts to enter something into the computer. Then she gets a confused look on her face. She hits a few more letters on the keyboard. She asks Sarah her name...like somehow it was going to be different than the ID and the name printed on the letter. Then she looks at the calendar.

"Sorry, your appointment is for tomorrow"...

Monday, December 13, 2010

I'm A Winner!!

Do you remember the picture I submitted for the Dum-Dums contest?

Well today I got a box in the mail.

And it says I am a winner. Not the grand prize winner...

but look how cool. I got a bag of Dum-Dum Pops, a mouse pad, a Frisbee and a very cute key chain.

It was like getting an early Christmas present. Thank you Spangler Candy company.

Sunday, December 12, 2010

Light a Candle for Kristen

This is a picture of my blogging friend Kristen. She is spending Christmas in Heaven this year. I miss her. I know her family really does too. They have been busy making candles to take to her grave site tonight in Utah. It is the day of the Compassionate Friends Worldwide Candle Lighting Ceremony. We will be lighting candles at our house and at the store.

Please join me today, Sunday, December 12th at 7:00 pm by lighting a candle for Kristen and all the other children who have passed away. If everyone participates it will make one large circle of light around the world.

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.

Heading to the Cleveland Clinic

Remember this POST? The day the oral surgeon said no way to removing my wisdom teeth that need to come out.

Well finally, we got the call last night and today...we are heading to the Cleveland Clinic to meet with the new oral surgeon there. I'll let you know what she says.

Sunday, December 5, 2010

Making a Wreath

Today, I am going to show you how to make the wreath from my last post.

First, you start with a pile of pretty fabric. We used 12 Days of Christmas by Kate Spain. My mom cuts a 2 1/2" strip the entire width of each fabric. Or you could use a jelly roll which is already 2 1/2" wide. We sell those in the store.

Then Sari presses them flat with the iron. She loves to use the iron.

While Sari is ironing, I am picking up the fuzzies left behind from the cutting. My mom uses a pinking blade on the rotary cutter to make the edges cute, but it leaves behind lots of little threads.

Look at all these fuzzies.

After Sari is done pressing the strip, I go over to get it. Then my mom cuts it into a piece 6 1/2" long.

Then I sort them into piles. Now they are 2 1/2" x 6 1/2" in size.

Next Sari folds them in half the long length.

Then she presses it flat. She has to be very careful to not burn her fingers.

Once she has a bunch pressed, she brings them over to me at the counter.

That's when I tie each strip onto a metal frame.

I have to be sure to pull each one tight so it does not fall off. Once the wreath is full I twist the ties so they are all facing toward the front.

And then it is done. If you would like to see it on the wall click HERE.

Thursday, December 2, 2010

Where's Sarah


Haaaa...here I am. Sari and I have been busy this week making wreaths. This one came out really cute. It is made with 12 Days of Christmas by my friend Kate Spain. It is really easy to make. I will show you how tomorrow.