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.

Monday, November 29, 2010

Cutest Customer Connections

by Joyce...to read the beginning of this story, click HERE.

...As soon as Lily told me who her school principal was, I ran upstairs to get Sarah. I truly believe connections like this happen for a reason. After I asked Sarah to come downstairs to meet a new customer, I went back down to talk to Lily. For some reason, I felt like I needed to prepare her a little. She is afterall, only seven years old. I got down on my knees so I was at her eye level and told her that my daughter had Down syndrome. I asked her if she knew what that was. She did not, so I simply told her that it sometimes takes Sarah a little longer to understand things. "OK,"she replied. Within seconds, Sarah walked into the store. Lily simply put her hand out to shake Sarah's and said, "Hi, my name is Lily." My heart swelled. That's Sarah's line. How did Lily know that? Sarah, replied, "Hi, my name is Sarah."

And then they just started talking like two girls hanging out in a fabric store. They talked about Mrs. B. too. I told Lily about all the wonderful things that Mrs. B did for Sarah.

Every student deserves at least one Mrs. B. in their schooling years. She was an amazing teacher the two years that TJ had her. So I was thrilled when they placed Sarah in her room for third grade. But I had no idea when school began how dear Mrs. B would become to us. Shortly after school started, Sarah became ill. She ended up spending most of October, November and December in the hospital. As Sarah's body grew weaker and weaker, the doctors at the Cleveland Clinic were loosing hope. Mrs. B. had the challenge of keeping Sarah's classmates informed of her deteriorating condition without frightening them. She lead the efforts of having the class frequently make get well cards and then she would deliver them to Sarah. Most important, Mrs. B never gave up on Sarah.


When Sarah was able to get to school, even for just a few hours a day, Mrs. B. would make sure she was fully included in whatever the class was doing. Then when Sarah's doctor decided to try giving Sarah monthly infusions of IvIg, Mrs. B suggested that we take pictures to help the class understand what she was going through. We blogged about that HERE. Without a doubt, Mrs. B shaped the positive relationship that Sarah had with her classmates from that point on. Sadly, we lost track of Mrs. B because another school district several communities south, hired her as a principal.

That is, until Lily came into our store. Before Lily and her grandma left the store I quickly wrote a little note to Mrs. B. I included a copy of the article that appeared in the paper about the store opening. I asked Lily to deliver the note to her principal.

This weekend we had a comment left on the store's website: Dear Joyce and Sarah, Thanks for the great note. I was so happy to hear of your new venture. Sarah you are still beautiful. I read your blog...I will stop and visit your new house of fabric soon. Mrs. B.

Tears of joy here. Truly By Design. Thank you Lily for being our connector. And thank you Edna for bringing your precious granddaughter to meet us. We hope to see you again soon.

Saturday, November 27, 2010

A Great Message for the Big Day



I'm a donor, Are you? GO BUCKS!!!!!!

Thursday, November 25, 2010

Traditions Interupted

"Mom, the turkey is still frozen"

"Yes, I know Sarah. We are not having it today." "But Mom, it's Thanksgiving." "I know Sarah. But we can't have our big turkey dinner until after the big game." "Ohhhh."

So today we made lasagna. Two of them. Why two? Oh that has to do with a new tradition. My two brothers are driving to Columbus in the morning. It's the biggest weekend of the season. Now TJ won't have to worry about Matt being hungry all the time. He will have the extra lasagna to eat.

So tonight we eat lasagna. Then on Sunday, we will have a big turkey dinner in celebration of the big win. You know, after Ohio State beats Michigan!!!!!!!!!!!!! Go Bucks!!!

A Thanksgiving Favorite

(first posted on 11/25/208) By Joyce...For the past few months I have been reading with Sarah the stories of so many wonderful families who have entered our T21 circle. Some are just beginning the journey and wonder if they have the strength. Many are struggling through the medical hurdles that often present with a child having Down syndrome. Some are fighting through battles with school districts, a few are wishing friends or family were more accepting and supportive. Several are hoping to not loose their jobs, especially worried are those who carry the health insurance. Some are exhausted just trying to keep up with the day to day demands, some are concerned about what this experience is doing to the siblings. Most have financial concerns. A few are trying to create life plans for their young adults future. Many are simply wondering what comes next.
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Over the years, John and I have shared in all these feelings. We have laughed and we have cried. We have weathered the storms as they come rolling in and we have learned to be oh so flexible. There are nights that we climb into bed and just want to pretend none of this is real. On those nights the lows seem so low. Then there are moments that shoot us up to the moon and back and remind us this journey has been larger than all of us and is so worth it all. The little gestures that remind us the highs are higher than high. Last Thanksgiving, Sarah presented us with this card which is one such example:




I cry each time I look at this card because of all it represents. First, her printing. I think back to the number of IEP meetings where they suggested that writing might be too difficult and why not just go to a picture language board. The number of times we were told her finger grasp was not appropriate or strong enough for holding the pen. The IQ test that gave us a number of 68, followed years later by 47. Numbers that could suggest feelings and emotions might never be defined. Yet here is our beautiful daughter articulating that she is thankful for her house, seeing her brother (who's been off to college) and her good family. Is it By Chance or By Design that we are blessed to have this wonderful girl in our life? To be given the strength to continue on, to challenge the status quo, to fight for greater acceptance, and to question professionals who might see an easier short term escape. We are so thankful for being given this opportunity. We love you Sarah. You are the thanks in our giving. We feel blessed beyond measure.

Tuesday, November 23, 2010

Forget Santa

I am going straight to Grandpa with this request. I know what I would like for Christmas.

I found it on the computer all by myself. I go to Amazon.com Then I type in 7th Heaven.

It is seasons 4, 9, 10 and 11 that I am missing. Thank you.

video

Sunday, November 21, 2010

Just like Karate Kid

After my friends left, we had to get to work. Five boxes of new fabric arrived on the same day.
Sari worked in the front room taking the bolts out of the boxes and then I would load them onto the shelf.
Sari and I are getting really good at that. We were about half way done when my mom came into the room.

She told me to take it down. The brown bolt that is.

Then she told me to pick it up.

Then she told me to put it down. "Mom," I said, "C'mon!!" She smiled. And then she said, "You're just like the Karate Kid Sarah. Remember... jacket on. Jacket off. Jacket on. Jacket off." And then we both bust out laughing. That was a good one mom. Funny.

But it made me tired. So I had to sit down. I bet Grandpa never thought I would be sitting on the shelves he made for the store. It makes a good seat. Are you wondering about the fabric? It is really for Valentine's Day. It is Giddy by Sandy Gervais for Moda. My mom said we are going to make some fun things out of it for little heart patients. That should be fun.

Friday, November 19, 2010

A Visit from my Friends

Hello. Have you missed me? My mom was obsessing about getting the computer backed up after reading about Aunt Leanne's sister the other night. Now that a computer crisis has been avoided, I can show you what happened in the store today.

Three of my friends came in to see me. We have all known each other since we were babies. We started in early intervention class together a long time ago.

This is Leesa. She works at a hair salon now.

And on the other side of me is Brittany in her high school letter jacket. She and I are only eight days apart in age. She works at Rockwell Automation.

And this is Carrie. She works at Bank of America. Oh here is one more thing. Do you remember Tim from No Rulz Art? He came into the shop with the tie-dyed socks and head bands that we sell in the store now. Well, Leesa, Brittany and Carrie work with Tim doing that too. And soon, we are going to be working on something that will combine all our efforts.
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Yep, here we are twenty some years later. We are working, planning projects, hanging out. A fun group of young woman who just happen to have Down syndrome.

Monday, November 15, 2010

Baby It's Getting Cold Out!!!

Brrrr....it's time to get the winter coats out. I need a new one this year. I always get a North Face because I love them. This year there are a few new colors. I had a hard time picking. Which one do you like best...

This looks sorta orange in the picture but it is called "Retro Pink" or

this one called "Orchid Purple." I had a very hard time deciding.

Saturday, November 13, 2010

A Text Message from God

by Joyce...last evening we had plans. Well established plans involving a host of people. John and TJ were in Columbus all day for a meeting with a client. Matt had a soccer game in Lodi(about one hour south of Cleveland heading to Columbus) on Saturday. So after the store closed at 5:00, the logistics were to play out like this...Sarah and I would drive Matt to Canton to my parents house where he would spend the night and then they would drive him to Lodi for his game. John would leave Columbus on Saturday morning in time to arrive at the game and then bring Matt home. When I arrived home Matt and Sarah were ready to go.


I decided I best check the email one last time to make sure there were no game change announcements. Good thing I did. There was a reminder that the facility the game was at had an indoor shoes only turf, meaning no cleats. I knew before I asked that Matt's indoor shoes were too small. So I suggested we stop at Dick's Sporting Goods on the way out of town.


As we walked into the store, Sarah spotted the new set up of NorthFace coats. We had already talked about getting a new one this year, so Matt headed back to the shoe department and Sarah started trying on coats. She found one she liked and I then started pulling matching hats for her to try-on. As we were trying them, one fell on the floor. I immediately bent down to pick it up. As I quickly rose back to a standing position, the store began to spin. I have had this problem for years. I have low blood pressure, not a bad thing necessarily, but if you stand up too quickly it can throw your equilibrium off base. Usually it fades away after a short amount of time, so I did not think to much about it.


After paying for our stuff, we headed for the freeway. No sooner did I accelerate on the ramp, when I recognized my head was still spinning. Not good. But as much as I wanted to get off at the next exit, our logistics were tight. As a mom, I certainly did not want to disappoint Matt or his team by not getting him to the game. John and TJ were three hours away and the closest player on Matt's team is an hour away. So I pressed on.


The next exit came up. My head told me to get off. I did not. I decided I better tell Matt how I was feeling, just in case I passed out. We went over a plan in case he had to take over the wheel. But what about Sarah. It is totally not wise for me to be in the car alone with her not feeling well. So I said a little prayer..."Dear God, Please help guide me and the kids safely to Canton." Almost within an instant, Matt opened his cell phone to read an incoming text message.

Nothing out of the ordinary for him. That's how his generation communicates. As I looked forward, the road I knew to be straight and solid was looking like a swinging bridge. Trying to keep my mind off my dizziness, I asked Matt who he was texting. He told me it was Chris L. a former soccer teammate. Chris had just heard that the team he plays for now would be playing Matt's team in Lodi on Saturday. "Oh that's nice," I said. "You have not seen Chris for a long time." And in that exact instant, I knew who that message was from. It was my guardian angel telling me to get off at the next exit. You see, Chris lives right around the corner from us. His family could get Matt to Lodi in the morning.

As I turned the car around and headed back north, I had to smile. I said to Matt, "Hey, it looks like God knows how to send text messages now." His reply, "He's always watching out for us Mom."

Thursday, November 11, 2010

Saluting Our Veterans

We got to the store early today because we had a special display to finish.

I had to make a sign.

I think this will be good. It is important to say thank you to all the men and women who have served our country. Both yesterday and today.
We have some very special pictures in our display. Do you see them? They are from our blogging friends who have a loved one in the military...

...like the Andrews family. They have three members in the Army.
...and A'Reian's Dad. Guess what? Today is her birthday. Happy Birthday A'Reian.
...and Big Blueberry Eye's dad. They have a very good post with a video up today.
And Kennedy's Dad, Frank. He works in a helicopter. Cool. He just got home for a visit. I love the smile on Kennedy's face when she saw him at the airport.
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I'm sure there are more families too. Sorry if we missed you. THANK YOU to all who serve and their families for the sacrifices they make.
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To read about what we are doing at the store, go to the store's blog.

Wednesday, November 10, 2010

Monday, November 8, 2010

Gifts from the Heart for Downs

I had a package waiting for me at the store. I love packages.

I very carefully opened it because it felt soft.

It was soft because there was a shirt inside.

It says "Gifts from the Heart for Downs." There was a very nice note from the founder Kim Adams, which told us all about this new venture. The purpose is to grant wishes to people with Down syndrome. You can read more about it HERE.

There were some pictures of her two kids. Both of them have Down syndrome like me. I put the pictures right up on our display board.

A little while later one of my mom's friends came into the store. Her name is Catherine. She really liked my new shirt. Thank you Kim for sending it to me. I will wear it proudly.

Sunday, November 7, 2010

Playing with Fire

by Joyce...this playground situation has been wracking havoc with my thought process. I just could not wrap my arms around why someone would do this. How could a human beating heart wish to take away a playground designed for all children with complete accessibility. A play area built with love by and for citizens of our community. When the police released the snippet of information that they were looking for two twenty somethings, my heart sunk further. Our blog readers were as outraged by that notion as I was.

The next day I saw the video from the surveillance cameras at the park. The two twenty somethings were love birds. It was obvious. They were simply taking a walk in the park, arm in arm, holding hands on a peaceful fall night.

Then three teens followed on the tape...wearing hoodies, low riders, and on skateboards. They looked suspicious. Simply by their look and their attire. But not so fast. My son wears hoodies. Often has his pants sagging. Even tools around on a skate board from time to time. Does that make him guilty of arson? Today we know more. A press conference was held. It was the teens. They confessed and with their families turned themselves in. They claim they had no intention of burning the park down. They found a used flare and lite it. They placed it on the ground. Not realizing the ground was entirely covered with recycled rubber. Sounds like a bull story. As saddened as I am about the playground being a pile of ashes, I believe them.

I seem to be in the minority at the moment. The comment sections on local newspaper and television websites are filled with hatred toward these three young teens. Nasty, vile and venomous comments are being written by adults toward three 13 year olds. I wonder if any of these commenter's were ever thirteen? Can they not remember doing something stupid as a teen. A curiosity moment with fire crackers perhaps? This clearly was not a malicious act. The teens did not plot out a scheme to purposely burn down a playground.

I am not saying these kids should not be punished. They indeed should. I do believe they should be made to help clean up the mess. They and their families should be there as the community comes together to rebuild the structure. I think they should also go around to the junior high schools in the area and help teach their peers that it is never a good idea to play with fire. I suggest we all use this experience to reach out. To help others understand from the mistakes. Especially with our own children.

On Saturday, the community held a rally. It is heartwarming to see the response...


Thursday, November 4, 2010

Height Fright

Guess what I was doing today...

My knees were shaking on this top step but I did it!!!

Wednesday, November 3, 2010

No Surprise...Arson the Cause...

by Joyce...No surprise...yet the newspaper is reporting today video surveillance tapes point toward two persons of interest...a man and a woman...believed to be in their 20's. My heart sank when I read that. Somehow I suspected it was young teenagers fooling around and things got out of control. But two people in their 20's is a bit of a different story. Young adolescent prank is no longer a viable defense at that age. I hope they catch the couple soon. I would like to hear an explanation. I also would like to see them ordered to clean up the mess with their bare hands. No doubt the children will be watching from the sidelines with tears of sadness streaming down their checks.

Monday, November 1, 2010

Sad Night for Our Playground of Possibilities

by Joyce...Over the years our family has spent many hours at Bexley Park. Sarah loved her playgrounds. Hanging from the monkey bars was her claim to fame. A few years back a group of citizens had an idea...to build a new playground at Bexley. A playground accessible for everyone. They named it the Playground of Possibilities. It took a few years to raise the $250,000 needed. Then the fun began. Volunteers of all ages participated in building the awesome structure.

It was a great place for all kids to enjoy. Cleverly designed ramps made all areas accessible. Around the outside was a fence. Each of our kids had a board with their name engraved in it. It was a birthday present to each of them a few years ago. I kept meaning to take them up there to take pictures. I never did. And now it is too late.

Tonight, the South Euclid Playground of Possibilities caught fire. I know there are many very sad friends in the area. So many worked so hard to raise the money and build the structure. It just doesn't seem right.

It was an intense fire. Flames could be seen from miles around. I wonder what happened? I sure hate to think that someone purposely set this fire. I'm sure the investigators will find the cause.

Later this evening, I had to go see for myself. The smell was horrendous. The sight even worse. It's hard to see something that so many kids enjoyed end this way. I have a good friend who lives a block from the park. We sat in her family room reminiscing. All we have left now are the memories.
(some photos from the Plain Dealer website)