My Name is Sarah
Thursday, April 30, 2009
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
We love that the April Showers...
...bring beautiful May Flowers...
Monday, April 27, 2009
Sunday, April 26, 2009
She invited us to come. It is very hot today. And a little windy.
Saturday, April 25, 2009
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.
Friday, April 24, 2009
Thursday, April 23, 2009
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
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
Here I am in the Pacific Island Water Gardens.
Friday, April 17, 2009
It is at the Franklin Park Conservatory.
Watch this video to see a butterfly land on my shoulder. It really scared me at first.
I love this movie theatre. It is very close to the Ohio State campus. Sometimes it is crowded. but not tonight.
Thursday, April 16, 2009
But mom, that's not what the ad says...
Wednesday, April 15, 2009
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...
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
...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.