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, October 31, 2008

31 for 21: A Message from Mom

I can hardly believe it has been 31 days. I will admit that blogging for 31 straight days has created some tension in the household for Sarah and me. The guys are demanding dinner, but we are blogging. Matt wants us to come to his soccer games, but we are blogging. Everyone is out of clean underwear, but we are blogging. The milk jug is empty, but we are blogging. Dad wants to do his work on his computer, but we are blogging. The school bus is beeping it's horn at 6:30 in the morning(bet the neighbors loved that), but we are blogging. I'm late for work, the excuse: I was up all night blogging... you get the picture.

In all seriousness, what a super idea to post for 31 days in support of Down syndrome awareness month. Thank you Tricia. Sarah and I have just recently found this wonderful world of blogging. Let me tell you how this all came about. Sarah and I met Melissa Riggio years back when we first attended a national Ds convention and have been following her musical adventures ever since. I was at work when I received the first email alert of Melissa's untimely passing. I immediately did a google search for additional information and that is when I stumbled upon Tara Marie's blog about her beautiful Emma Sage.

I continued to read through other blogs Tara has listed and I repeatedly saw a square box with "Praying for Parker." Finally I clicked that box and up came these adorable pictures of Parker. Upon closer examination I discoverd he is Down syndrome and has a trach. My eyes immediately welled with tears. Not because I was sad for him, but because after nineteen years I finally found another child just like my Sarah. Can you believe in all these years I have never met another child with Ds who has a trach. All these years I have felt so alone with that part of our journey. Soon I found a link to sweet Maddy in Cinninati who also has a trach. Now I'm hooked. I find myself running to the computer the minute I get home from work to continue exploring. Sarah is perched right next to me as we look at photos and I read her the stories.

We started following so many cute and adorable kids. When Matt came home from school he would ask, "How's Parker; what did Ella Grace do today; did Megan have her sleep study yet?" We were all hooked. It did not take long for us to figure out there are not too many sites about teenagers. That's when the idea of Sarah's blog started to take shape. I thought about the different stories we could tell of things I fretted about when she was a toddler. All the fun high school experiences that I wondered if she would ever have a chance to do and has now done . And we could show all the skills she has aquired. That's when it hit me that this needs to be Sarah's blog. Sarah blogging her own story.

Of course when Sarah was born, the word blog would not have passed spell-check. What a minute, when Sarah was born I was typing on an IBM Selectric typewriter (which is why my boys think I roamed earth with dinosaurs), so we didn't even have spell check. I admit it has taken quite a few hours to get set-up and go live. And we are continuing to learn along the way.

That brings me to another issue. During the month, we have been tagged and zapped and sent bloggy awards. We are touched and honored but we have not responded yet to any of them. Please don't think we are being rude. I have yet to figure out how to get those imbedded into our blog. I finally broke down and bought "Blogging for Dummies" last weekend so hopefully I can figure it out soon.

In closing, let me say we have been humbled at the response we have been receiving. Words truly cannot express how overjoyed we have felt in knowing that Sarah's story has given a small glimmer of sunshine to families in showing that the journey only gets better with each passing day. I am continually in awe of so many of you. In truth, I started out thinking we were going to be helping younger families, yet what I have quickly realized is we are the ones that are receiving. It seems each night I stumble onto a new site that gives Sarah a sweet new face to remember and helps me uncover truths and pains that I have buried over the years. I am so grateful to Lisa, with her handsome little Finn, for telling her story in such a poignant and tender manner early in their journey. And I would be neglectful in not acknowledging that our connection to all of you would not have occured if it were not for Melissa. Was that By Chance or By Design? To the Riggio Family, you continue to be in our prayers. We will never forget your amazing daughter and what your entire family has meant to the Ds community.

Favorite Fall Memory # 31

Halloween 2002
I am 13 years old.

I decided to be a Cleveland Indians player. They were doing pretty good that year. It is so cold out. I had to wear lots of layers, jeans, and gloves. I have so much on, I can hardly move.

Matt is now 6 years old and he is obnoxious. I think this will be the last year I go trick-or-treating with him. Do you know what he is this year? I don't. Something to do with Star Wars I think.

You know it is cold when grandpa is wearing a hat. The cold did not bother Matthew. He and grandpa walked for miles. Not me, forget it. Plus my dad let me in on a clue: the day after Halloween, bags of Reese's Cups are half price. I guess Halloween lost it's luster for me now that I am a teenager.

Thursday, October 30, 2008

Favorite Fall Memory # 30

Halloween 2001

I wore my baseball uniform again. Matt was Batman.
This is TJ... LOL, not really. This is the year he decided to climb on the roof and throw plastic spiders at the kids when they came up to the porch. Ewww, scary....

Grandpa would drive up from Canton to take Matt trick-or-treating. Sometimes I would go with them. I really like staying home and handing out the candy though.

Matt got a pencil at one of the houses and he looks pretty excited about it. Me, well I prefer Reese's Cups.

Wednesday, October 29, 2008

Favorite Fall Memory # 29

So sad, it's time to say goodbye to Chicago. We had such a good time. I loved being with my friends in a new, big city.

I watched all my friends come brush their hair in front of this mirror so I decided I better do it too. Time to put on our Girl Scout vests. We always travel with them on.

I am taking another picture. I had to be careful not to get to close to the blue line.

Grrrrr, that's the wrong train.

One last picture before we walk into the airport.
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A MESSAGE FROM MOM: Wow!!! What a trip. Way beyond anything I could have imagined. I had a few questions about how the troop paid to get there. The girls decided they wanted to visit the American Girl store when they were in third grade. For World Friendship that year the girls chose Mexico and I used the AG doll Josefina, to help teach the unit. It took three years of serious cookie selling to earn enough for all of them to go. It cost approximately $265 per girl(2001) . That covered airfare, admission to Shedd Aquarium, the Institute of Art, The Musical Review and dinner at American Girl, dinner at Rainforest Cafe and two nights stay at the Youth Hostel. We ate breakfast at the Youth Hostel each morning. The adults paid their own way.
The last thing I did before we got on the plane to come home was throw away all the maps and details I carried with me for the nearest Chicago hospital. When we first arrived in the city, you may recall the photo of Sarah pulling her suitcase and on top was a black duffle bag. That duffle bag carried all our emergency medical supplies. I take everything, just in case. Thankfully, we never had to open it, until we got back to Cleveland. Then Sarah collapsed, but with memories like what we just experienced, how could we complain. I have been so richly blessed to have all these wonderful girls in my life. Troop 1977, thank you.

Tuesday, October 28, 2008

Favorite Fall Memory # 28

HAPPY BIRTHDAY MATTHEW

October 28, 1996
My grandma & grandpa brought me to the hospital to meet my little brother. Look how silly my face is. I guess I wasn't sure if he was real.
My mom let me feed him. He was really hungry.

And then I knew I had to burb him, just like on television.

TJ was 8 1/2 and I was 7. I think TJ was happy to have a little brother.




Monday, October 27, 2008

Favorite Fall Memory # 27

Back to my Girl Scout trip to Chicago. So we finished our dinner at the American Girl store and then we decided to head over to do a little shopping at Water Tower Place. I saw these neat pillars so I snuck behind one of them to hide. My mom was screaming, "SARAH...SARAH...SARAH WHERE ARE YOU." I love to do that to her. Then I casually lean against it in my model pose. She just shakes her head.


Now this is one amazing toy store.

Back to the Chicago Youth Hostel. We play some ping pong before heading to bed.


I am pretty good at ping pong. This is my best friend Stacy playing with me.


Do you notice I have been posing alot on this trip? It must be from watching Mary Kate and Ashley Olsen movies. I love those twins.

Sunday, October 26, 2008

Late Breaking News

My little brother Matt is the goal keeper for the U12 Division 1 Cobras. They won the Championship today at the CASA Fall Tournament.

Matt came over to give me a hug as soon as his team walked off the field.


I am so proud of him.

Here is Matt with his trophy.


This is the U12 Division 1 Championship Team...
The Cleveland Cobras
I should mention they beat Northern Steel - a team from Pittsburgh to win first place.
That should make Cleveland fans extra happy.



Favorite Fall Memory # 26

Dining at the American Girl Cafe...




My fellow Girl Scouts let me sit at the head of the table.


I'm taking pictures again.


Hello.....Dinner has arrived. Look how cute this cart is.
The waitress let me push it in.

TaaDaa...








Saturday, October 25, 2008

Favorite Fall Memory # 25

Shhhhh....We had to be very quiet and I had to put my camera away. We started our Saturday at the Art Institute of Chicago. There was a very famous exhibit called Monet that we got to see. The paintings were very pretty.

Then we were off to our main event...The American Girl store. First, we saw a show called Circle of Friends:An American Girls Musical. The actors were our age. It was very good.



After the show we got to hang out in the store for a while.


Here is me and Jenny goofing around.


I found this really cool CD player and microphone. I think I will put this on my Christmas list.


Oh the Bitty Babies are so cute.


Look at this cute tent. There are so many cool things to choose from.






Friday, October 24, 2008

Even Later Breaking News

Oh Yea!!! High School Musical 3 - It's the Best!!! I am so in LOVE with Troy Bolton a.k.a. Zac Efron. The music is so good I am dancing out of the theater.



Late Breaking News

Do you know why I am so sad? I just went to the theatre to see the 7:45 showing of High School Musical 3 and it is sold out. I have been waiting for this for so long...

My mom says we will go back for the 9:30 show. Good thing it is just around the corner. I hope we get in.

Favorite Fall Memory # 24

Back to my Girl Scout trip to Chicago... At the end of the last posting, mean ole Mrs. Ely said "No Taxi." So we had to go looking for that subway station again. Ahhhhh, we found it.

Ughhhh, just like in the movies. The escalator to get back to the top is never working. I have this thing about needing to be the last one up the steps. My friends all know it, so they go before me and then up I come.

Well we made it back to the Chicago Youth Hostel. Our room was like a big dormitory.

I picked a top bunk. Once I got up there I had to have everyone hand me my stuff.


After we got our pj's on, we hung out and listened to our music. I had fun.


Tommorrow is the big day. I can hardly wait...






































































































































































































Thursday, October 23, 2008

Late Breaking News

The CEVEC Dinner/Dance was tonight.
My mom snuck in and took two pictures before we went home.
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Here I am with my dancing partner Brandon.

This is my friend Kara. She went to Brush High School with me.





Favorite Fall Memory # 23

Finally we arrive at the Rainforest Cafe...

Earth to Mrs. Ely...Subways are underground...
We walked and walked and walked and walked, looking for the entrance to the subway to take us to this destination. Except my mom(that would be Mrs. Ely) was looking up and we should have been looking down. But we finally arrived.
This is a fun restaurant. I think Jenny found a new boyfriend.


What a fish tank!!!

Holy cow, what a gift store. Say "cheese."


Oh yes, my favorite meal...chicken fingers and french fries with a big huge blob of catsup.


What is so funny? We had so much fun. We were always being silly.
That's what I love about Girl Scouts, just hanging out with my friends.

Mean ole Mrs. Ely says, "No taxi," so now we have to try and find that subway station again...