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.

Thursday, April 30, 2009

School Girl CRUSH

Mom: "What's wrong Sarah?

No response from Sarah but sniffling.

Mom: "Did something happen on the bus?"

Sarah shakes her head no.

Mom: "Are you sick?"

Sarah shakes her head no.

Mom: "Did something happen at CEVEC?"

Sarah shakes her head yes.

Mom: "What happened?"

Sarah blubbers out, "Mr. K."

Mom: "Something happened with Mr. K.?"

Sarah: "Yes," followed by more sobs.

Mom: "What happened?"
Sarah: "He was talking to another girl."

Mom: "Well Sarah, Mr. K. is allowed to talk to other girls. He is the teacher."


Sarah: "But he had his hand on her shoulder." Sob, sob, sob.

Mom (wrapping her arms around Sarah's shoulder): "It's going to be o.k."

Mom behind Sarah's back: smile...smile...grin...ahh, this is just like my crush on Mr. Breen, my 6th grade teacher.

Tuesday, April 28, 2009

Mother Nature...Can we TALK?

Now please don't take this the wrong way. You know we love the changes in the seasons. We really do.
.
We love that the April Showers...

...bring beautiful May Flowers...

We really do love the changes. We love the different colors you bring each season. We like the different activities we get to do. We even like the different clothes we get to wear. BUT...
.
...SERIOUSLY...
.
...Does it have to go from 30 to 88 back to 46 in an eight day time span???!!! You're killing me...literally. You know I suffer from secondary pulmonary hypertension. My lungs are fragile. My airway is full of scar tissue. Every time the temperature fluctuates more than 10 degrees my body cries out in the form of asthma. My oxygen saturations plummet, then I start aspirating fluids then the gastroesophageal reflux kicks in. Please MOTHER NATURE Please. Could you just make up your mind...

Monday, April 27, 2009

No Mom, I'm Not taking it Off

I Love this outfit. Julie gave it to me. I'm not taking it off.


Sunday, April 26, 2009

Synthesis: Connecting with Home Away from Home

So here I am at The College of Wooster for a very special event. My big brother TJ shares his life with an amazing woman. Her name is Julie. Today is the opening reception for her exhibition in the Art Museum.

She invited us to come. It is very hot today. And a little windy.

This is what her invitation postcard looked like. She is very talented and a very good photographer.

Ahh... look at us. This college has a very pretty campus.

I was having a little trouble breathing so I sat on this bench. My mom decided to take a picture because in the background is one of Julie's features. She had pictures printed on transparencies and then arranged them so they overlapped to give the viewer a unique view. This picture is sorta like that. If you look all the way thru you can see Pete and Katie standing on the other side.

And in this picture TJ is looking through too. Cool. Great show Julie!!! Thanks for inviting us.
.
In the end I went into a full blown asthma episode and caused a little scene. Sorry Julie. Thanks for helping to take care of me and for letting me borrow some clothes. We are very lucky to have you in our family.

The Best Scarlet and Gray Story Yet

For all of our Buckeye fans out there, especially those of us who missed the Scarlet and Gray Spring game yesterday, please go over to the Beautiful Cayman Cindy's blog and watch the awesome video her parents have posted. Daddy Mike is a huge, huge, huge Ohio State fan and to see the smile on his face and the thrill in his voice as he holds his little princess in the Horseshoe has tears streaming down my face. Cayman is definately the cutest little cheerleader we have ever seen. Thank you Kristen for sharing this video. It is priceless!!! From one Buckeye family to another OH-IO!!

Saturday, April 25, 2009

New Home for the GSNEO

If you have been following my blog for a while you know that Girl Scouts has been a very large part of my life.

Today the new building for the Girl Scouts of North East Ohio had a community open house. I have horse riding on Saturday so we couldn't get there until almost the end, but we made it. My mom got to see a friend from her United Way days that came all the way from New York City to speak.

So here I am in front of the new sign. We did not get any pictures inside because my mom spent too much time talking to people she knew.
Do you see my mom and me? We are hiding behind the sign. It was so windy today our hair was going crazy. Radio Disney was there and firetrucks and big inflatables and lots of balloons. Thank goodness I did not see any clowns though. You know how I feel about clowns.
.
P.S. We got to sample the new Girl Scout cookie that will be coming out next year. It is called Thank you Berry Much. Can you guess what is in it?

Friday, April 24, 2009

Thursday, April 23, 2009

Nanny for a Summer, Friends Forever...

...This is Joyce with a surprise for Sarah when she gets home...

Earlier in the week I read a post written by Shelly over at Loving Arabella. If you have not met precious Bella, please go to her blog now. Little Miss Bella has decided to make quite a mark on the world. She is following so closely in Sarah's footsteps, well more like PICUsteps, it is eerie at times. She is keeping her family quite busy and they need a little help. So into their lives came a college gal who will be their "nanny" for the summer.

That so reminded me of our Lisa. Although Lisa was not in college when she started helping us out, she was actually only nine or ten and lived directly across the street so she did not need to live with us, but she was with Sarah (and TJ) all the time. They formed a bond that changed both of their lives, forever. And I suspect Bella, her sister Joy also Ds and their siblings will have the same effect on their new helper. Shelly describes that this girl was praying for a "nanny" position this summer. What this young lady doesn't yet realize, is she has been rewarded with not only a job, but a life altering experience.

I pulled out an old photo album shortly after reading Shelly's post to find a picture of Lisa with Sarah. This is the first one I found. I am guessing they were playing either beauty shop or dress up that day. Of course the turtleneck shirt Sarah is wearing is covering up her trach tube. That little tube didn't bother Lisa. Just like Sarah's funky breathing doesn't bother Lisa today.

How do I know that? Because this message was posted by Lisa on my Facebook this morning: So the next few weekends are pretty free for me, so I was wondering if maybe Sarah would want to come sleep over one night?

Sarah is going to be thrilled.

Monday, April 20, 2009

The up side of Downs New Website

The up side of Downs is the parent support group in Cleveland. They have a wonderful new website. Check it out by clicking on this link.

If you click on the ADVOCACY tab and then the FOR ME tab, up will come my picture, or click here. They call me their Blogster Extraordinaire and link to my blog. I like that. If just one new family finds somthing helpful to them, my mom and I will feel good.

Saturday, April 18, 2009

Too many Continents for one Fragile Respiratory system

The Franklin Park Conservatory in Columbus, Ohio is beautiful. They have many different garden areas set up. Each one is climate controlled.

Here I am in the Pacific Island Water Gardens.

and The Tropical Rainforest.

The Pacific Islands Koi pond

The Himalayan Mountains. What a beautiful flower. I had to smell it.

Still smiling and then we...

..entered the Desert. Check out that chair. It is covered in cactus. Too bad because that's when I needed to sit...

...because I could not breathe. I was gasping for air. Good thing I brought my Albuterol puffer. I needed it two times. For a few minutes my mom thought she might need to call 911. That would have been OK because Nationwide Children's Hospital is just around the corner. I've learned to do relaxation techniques to help with my breathing episodes. This time it worked and I was able to walk to the car. Whew.....I have to get ready. We are meeting TJ for dinner.

video
Look how pretty this is.

Friday, April 17, 2009

Blooms & Butterlies

A few weeks ago my little blogging friend Leah went with her preschool class to see a butterfly exhibit in Columbus. It looked pretty cool to me, so today my mom and I went to see it.

It is at the Franklin Park Conservatory.

I'm still not quite sure how those hanging things turn into butterflies, but they do.

Oh look. I almost stepped on this one.

As soon as I bent down to look closer, it flew over here.

And then all of a sudden it opened and it was blue. Isn't it pretty?

video

Watch this video to see a butterfly land on my shoulder. It really scared me at first.

Miley Cyrus and Zac Efron in ONE night!!!

Earlier in the day I told my mom I wanted to see Hannah Montana The Movie. She said to me, "Sarah, we will go later." Then it started getting dark outside. It was getting late. Did she forget about me? Then all of a sudden she said, "Sarah, time to get ready."

I love this movie theatre. It is very close to the Ohio State campus. Sometimes it is crowded. but not tonight.

As soon as we got out of the car, I spotted this poster.

Oh my mom had a great plan. We saw Hannah Montana first and then went right into 17 Again at 12:01. How cool is that. A double feature. She said we can only do crazy things like this when I am on spring break.

I love movie popcorn. Oh by the way, the Hannah Montana movie was awesome. I LOVED it!!! I gotta learn that dance. Have you seen it? The Hoedown Throwdown.
Zac was really cute in his movie, but it was a little strange. My mom kept saying Zac looked HOT, hot, hot. Sorta like a young Tom Cruise. But then she started talking about being a cougar. I don't know why. It's not like we went to the zoo. Oh well. We never had dinner, so after the movies I was starving.

It was 2:23 AM. So just about everything was closed. Except McDonalds.

OMG!!! Look at all the cars in the drive thru. I didn't even know this many people were up this late.

Finally, it was our turn. Oh come on!!! What do you mean no snack wraps after midnight. I had to settle for a quarter pounder. It was pretty good though. I had so much fun tonight. But please don't wake me in the morning.

Happy Birthday to Madilyn McKenzie


I have been following the story of a sweet baby girl named Madilyn. She was having some rough days in Cincinnati Children's Hospital and so I asked for prayers to be sent her way. Well, prayers poured in from around the world and guess what? She celebrated her FIRST BIRTHDAY yesterday. Click here to go to her CaringBridge page and see her adorable birthday pictures and leave her a message.

Thursday, April 16, 2009

Please Pray for Arabella

This is sweet, precious Arabella. She really needs everyones prayers today. Please stop by her blog and leave an encouraging word for her momma and family.

It's ok to LAUGH with your mouth full

So we're in C-bus. That's what we call Columbus. It's late, late, late. I'm starving. So we hit the BK before heading to the condo. I am so tired I just can't stop laughing. That's when my mom says, "Sarah, don't laugh with your mouth full."

But mom, that's not what the ad says...

Haahaaaaaaaaaahaaaaaaaaaa

and some more haaaaaahaaaaaaahaaaaaaa

Lovely: SEE Food. Not really...junior whopper....haaaahaaaaahaaaaaa...with cheese.....

Stop trying to steal my french fry... haaaahaaaahaaaaaaaaaaaa

That will teach her to not post pictures while I'm sleeping. Can't a princess get some beauty rest every now and then? Haaaaaahaaaahaaaaaa

Wednesday, April 15, 2009

Always Happy ~ I don't think SO...

This is Joyce taking over the blog again. Sarah is still sleeping. It seems she is taking after her brothers. They too slept all day during their spring breaks. That's Ok though. She and I are going to go party down in Columbus later tonight. I'm sure that will be a different post.

Today, Deborah over at Sunflower Stories has a picture posted for Wordless Wednesday. The caption reads: "They are always such happy people." And there is her adorable Sean looking...well...not so happy. It got me thinking.
.
I have hundreds, probably thousands, of photos of Sarah being...happy. For the first two-thirds of her life I was taking pictures with 35mm film. It was costly, developing was even more expensive. So I chose to try to get mostly happy photos.
.
Then came the era of digital cameras. I was slow to convert. I loved my camera, love touching the photos, arranging them in albums, laying out scrapbook pages in my creative studio. Even when the men in my life were hinting, suggesting and then pushing me to go digital, I resisted.
.
Finally, I made the transition. I grew to appreciate the ease of proofing. Having the ability to immediately realize I need a reshoot. I have also broadened the scope of what I am willing to photograph. And that leads to a different issue. The dilemna of editing the content I put forth.
.
When Sarah and I started this blog, the purpose was to show the real life of a teenager. A young woman with Down syndrome. Today, thanks to digital equipment, I have more real coverage of our life. Yet, I sometimes struggle with what I put out here. For young families, I want to give them the hope that anything is possible. I want to provide a glimpse of why that diagnosis does not have to be one of gloom and doom as often is portrayed by doctors and the media. Sarah has had so many incredible experiences. Far greater than anything we could have imagined. Yes, she has been so happy.
.
Yet life is not always about smiles, is it? Down syndrome does not guarantee happy all the time. Why do so many people think that? Guess what? Teenage girls are not always cooperative. Teenage girls are not always rational. They can be moody, and cranky, and emotional. In an instant they can go from baking cookies with confidence and a smile to ...

Can't imagine what is making her so unhappy? Watch this...

video

Do I see this behavior often? No. But when I do, I am glad. I am relieved. It's what makes her more alike than different. Happy all the time? I don't think so.

Tuesday, April 14, 2009

Polishing my Pearly Whites

I am on spring break this week. So what does my mom do? ...

...schedules a dentist appointment. This is the very first time I have been to an adult dentist. His name is Dr. Vala. I used to go to a pediatric dentist but I decided it was time to grow up.

Boy, that light is bright. Not to worry, Marcy has sun glasses for me to wear. How do I look? My mom loves this room because everything is purple. The tray mat, the cup, the bib. Even the tools.

"OK, open big," she says. I am getting a cleaning. It's not so bad.

"Ugh. I don't like this polishing toothpaste so much, but I was being a big girl. At the end, I got to pick out a new toothbrush. I chose purple. Hmm... I wonder why
.
Here's a little video if you really want to see the action.

video

Monday, April 13, 2009

Cookies for the Easter Bunny...

Just wondering...

...why we leave cookies for Santa Claus...

...but not the Easter Bunny?

Well this year...

...I'm starting a new tradition.