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 life journey.

Monday, February 27, 2012

Monday, Monday

Today was a good day.

First, I went to the doctor. I am feeling much better. I have a brand new breathing machine and it works great.

Can you guess where we went next?

I'm not so crazy about this place. It sorta freaks me out.

Then I was off to music therapy.  Bonnie had a surprise for me.

Look how cool these drums are.  They have fabric wrapped around them.  Cool.

This is Bonnie's friend Melissa.  She made them.  She is a music therapist too.  We are going to use them at camp this summer.

Friday, February 24, 2012

Same Month, Different Year

by Joyce... Every February. Seems like deja vu. Yet every single year, I still get knots in my stomach as we play the game of head to the emergency room. Or not.  Tonight, my husband called and told me it was a 50/50.  So he gave her a shower while I was still working at the store.  It is a routine we have down by now.  If we do go the ER route, we know there will be no shower for a few days minimum, could be a week or more until that pulse ox gets up high enough for release. 

When I arrived home I found a patient not so willing to comply with our desire to head to the hospital.  We know she is having trouble breathing by all the scratch marks at her trach site.

She insisted she was not leaving her bed and instead tried to change the focus by asking me to take a picture of the Gilmore Girls.  So this picture is for you Sarah... 

Note all those Beanie Babies on either side of the television.  Many were collected during the hundreds of hospital visits over the years. It makes for a nice menagerie and a visual reminder that we are dealing with one tough cookie.  Oh speaking of cookies...I bribed her.  I told her if she would keep coughing and helping to bring up that asthma mucus she could have some...
this next pic might not be for the faint of heart.  To us asthma moms, it is like a nugget of gold... 

and with that treasure, I produced a brand new package of Chewy Chips Ahoy.  And that made for a very happy girl...

Darn. Just as this post is about to go to print, the nebulizer mask is not functioning.  Our last one.  I have absolutely no idea who to call to get a new one.  This will be our first request for durable medical equipment now that Sarah is a member of Care Source.  That should be a fun call come morning. Any Ohio readers have knowledge or suggestions?

I hate to think we will have to head to an ER just to get a new mask, but then Medicaid policy and procedures are not always defined by the brightest. Politicians like to get involved...OK I admit I need sleep.  Stay tuned for an update...hopefully by Ms. Sarah herself in the morning:)

Tuesday, February 21, 2012

Be Kind

Sunday, February 19, 2012

Date Night

I know my dad loves Whitney Houston.  She died this week.  So tonight I wanted to stay home with him so he could watch some special shows on tv.  I told him we would have date night.

My mom went out to dinner with Matt and his girlfriend and her mom.  So she brought us home a dinner. 

I asked my dad to feed me.  We had filet mignon with mushrooms, a baked potato with sour cream and vegetables.

No, I am not a baby.  We were just having fun. 

It was a very good meal and a good date night.  We are very sad for Whitney's family.  My mom has been talking to my brother about drugs and alcohol.  They are bad.  I know that too.

Friday, February 17, 2012

It's a Catch Twenty Two...

By Joyce.  I have so many blog posts swirling around in my mind. I so want to document all the little things that are presenting lately. A real life glimpse into parenting a twenty two year old with Down syndrome. I just never seem to have time to sit down and write anymore.  But here goes...

We had a dilemma this evening.  Matt had a premier team soccer practice in a community about 45 minutes from where we live and he does not drive, so John needs to take him.  The store is open until 8:00 on Thursday evenings so I need to be there.  Sarah has been fighting an asthma episode for more than a week.  She did not want to leave the house but we never leave her alone at night.  We do not have anyone trained to come watch her (that's a whole different post and one I won't get into tonight).  So what to do?  What to do?  My husband and I discuss the situation.  We discuss it some more.  I mentally list off all the possibilities of things that could go wrong.  Sarah really does not want to leave.  She pleads to stay home.  So we let her.

I called her at 6:30 to make sure she was alright.  "Mom, I'm fine," she says.  I remind her I have to run to the post office as soon as the store closes and then I will come straight home.  Then the store gets really busy, and I forget about worrying that she is home alone.  The last customer leaves at 8:05. I quickly gather my coat and bag and head out the door. Just as I am about to get into the car, my cell phone goes off.  I glance at the readout and see it is Sarah.  My heart jumps a beat. 

"Mom, Don't forget to go to McDonald's and get me chocolate chip cookies."  I sigh deeply, an expression of my relief. "OK sweetie, I won't forget." I smile to myself as I realize that she knew exactly what time to call me.  She likely even understands that I have a tendency to forget things lately.  I think about how far her speech has come lately.  How pleased she is with herself when she stays home alone.

But then as I drive off, I start to question.  What would happen if that call was the neighbor letting me know the house was on fire?  Or someone broke in through the side door.  Or a deer ran through the sliding glass door.  Would I be held accountable?  Would I be judged on her being left alone.  Is leaving a young adult with diminished judgement alone wrong?  It's a catch twenty two, I've decided.

When I walked in the door, Sarah was waiting for me. She already had her glass of apple juice poured.  She had a napkin waiting, and her chair turned around to watch television while she enjoyed her snack.  She is oblivious to my insecurities about her staying home alone when it is dark outside.

When I questioned her on why she was having apple juice and not milk, she confidently reminded me  that she has had an asthma episode and milk is not good for the airway.  I'll leave out some of the not so pleasant details, and just say she has been self managing her episode better than ever.

And then she went about enjoying her chocolate chip cookies.  So I went about putting in a load of laundry, folding the towels that were in the dryer and making me some dinner.  The guys got home about an hour later.  No worries. Life does go on. Until the next little dilemma, anyway.    

Tuesday, February 14, 2012

Valentine's 1992 Style

Twenty Years Ago Today...

Monday, February 13, 2012

Painting Hearts

Twenty Years ago Today...

Sunday, February 12, 2012

Sunday Sweetness

Twenty Years ago Today...

Saturday, February 11, 2012

A Counting Update

By Joyce:  I want to give a little update about our previous post.  I have been receiving many requests to share the video with teachers.  Yes, please feel free if you think it will help your child in anyway.  If you would like me to send a link for just the video directly to your email, send us an email at: sarahely8989 at (i'm spelling this out so we don't get spammed, but use the @ sign) and I will send it over.

If you follow us on facebook you have already heard this story, but I'd like to share it here as well.  I stayed in the office late on Thursday to finish the uploading of the video so I could do the post.  When I got home Sarah was waiting for me at the door.  She have me a hug and said, "Mom I saw the video.  Thank you for finding the money machine."  I almost melted right there in a puddle of mush on the floor.  I wonder how many times we have made her do things over and over and over again that were not pleasant, when a simpler solution was available.  And one that gets the job done.  I'm so happy she was able to articulate her feelings to me.

Now I have a question.  There is a big debate going on around me.  Should the title of the post we are talking about been:

1)  Do Counting Coins Matter     or

2)  Does Counting Coins Matter

It seems people here in Ohio are split 50/50.  So I thought I would ask a broader sampling. I'm really not sure.  Maybe I need to go back to grammar class:)

Before I go, I just want to share a photo with you.  Seems my little ole car wants in on this counting discussion too.  I ran to the bank today and on the way back to the store I looked down and...

...check out that odometer. LOL!!! Not to mention the frigid temperature in Cleveland today.  Sarah is really struggling to breath.  We don't dare take her out in this weather.  I just wish we had an oxygen tank in the closet.  She could use some I'm afraid.   

Thursday, February 9, 2012

Does Counting Coins Matter?

by Joyce...It has been a while since we have done a keeping it real post. The following video did not start out with this purpose.  I started taping simply to post when we talked about counting the money Sarah was collecting in the store for Katie, an adorable girl who is being adopted by the Simpson family.  I'll let you watch it now...

I used to have Sarah count coins in the store on a regular basis. Then we started getting too busy to have that be an every day activity.  As the camera started rolling on this day, I was stunned that Sarah was having trouble counting to ten.  She has never mastered the value of money.  Yet counting to ten used to be a simple task for her.  I will admit I was startled by this discovery.  My mind of course started going into overdrive.  Was this a sign of a larger problem?  Possibly another reminder that early Alzheimer's is something I need to be concerned with.  For the next few days, I raised that antenna higher than it had been.  I found many different opportunities for her to count things for me. The pattern was consistent.  Sometimes she was able to count to ten, sometimes not. 

Then very late one night, I ran into the grocery store.  Off to the side of the entryway stood three college age guys and an older gentleman.  At first I wondered if something had happened. I peered onto the floor to see if someone had fallen.  Seeing no one, yet being awfully nosey, I pulled my cart a tad closer in their direction.  It appeared they were all waiting for the big green cash machine.  So I went about my business of shopping.  As I was leaving the store, I noticed a woman at the same machine.  It was then I had one of those ahhhaa moments.  Why does Sarah need to count the coins?  She can bring the jars over here, dump them into the cash machine like all the folks I had observed.

Is this a good solution?  Am I giving up too soon?   Does counting coins even matter?  I'm not sure.  I do know we found the perfect solution for the task at hand.  In all, Sarah dumped nearly $500 into that machine over the past few weeks.  All to help bring a sweet blond haired girl home who's been living in an orphanage. And that does matter.

Wednesday, February 8, 2012

100 Years of Disney ~ Sarah's Video

Here it is.  The video you have been waiting for.  If you listen really closely you might hear my voice. I was full of animation watching this show. 

Tonight not so much. I am in bed with an asthma attack.  Darn lungs. I hate them.  I love Disney though.  Enjoy.

Monday, February 6, 2012

100 Years

Guess where I went this weekend?

I've been up this big escalator before. I love it.  My mom doesn't.  She kinda freaks out so I have to take her hand to help her get on.

The show is just about to begin.  We have new seats.  The first ones had some moms with really stinky perfume sitting in front of us. It made me start wheezing and gagging.  The usher wanted to call the paramedics over.  My mom told them no.  She said that I would rather die than miss what is about to happen...One Hundred Years of Disney...

OMG!! In all the Disney on Ice shows I have been too, I have never seen Donald Duck driving a zamboni.  I was laughing until I screamed for Goofy to get up.

Then I screamed again for Goofy to get out of the way.  That's when my mom decided she better turn the video on.  I would show you but she is too tired to upload it right now.

Do you want to know why?  Because it took us nearly four hours to get home from Columbus today.  We got caught in a huge traffic jam. I-270 and 71 was full of cars with New Jersey and New York license plates. There were lots of news station trucks. There was even a Brooklyn fire truck.  We were so confused.  Then my mom called my dad and he reminded her the Superbowl was in Indianapolis and this would be the way for them to get home.  The New York Giants fans that is.  Hey, I heard they won.  Yea for them!!  I wonder if the Cleveland Browns will ever get into a super bowl? 

Gotta go to bed now.  I will show you my video tomorrow.  Here's a hint. Lots of Genies and Toy Soldiers too.  See ya.

Wednesday, February 1, 2012

Coins 2 Cash 4 Katie

Do you remember this post?  We have been collecting coins in our store for Katie.  My mom got word that her forever family is about to travel.  That means all their paper work is done and they are going to be meeting Katie really soon.  So we need to count the rest of the money that is in our jar. 

Today is Wednesday. Penney works with us.  She said she would watch the quilt shop while my mom and I ran to the grocery store.

Yikes!! This jar is very heavy.  I hope I don't drop it.  Do you wonder why I am taking this jar to the grocery store? 

Taadaa!!  The big green cash machine:)

This thing works like magic.  It counts all the coins for me. I'm so happy my mom came up with this idea.  I was not having so much fun counting all of our coins.  So how much money do you think we have for Katie?

$41.15.  How does that machine count so fast? That's what I want to know.  So I hope this helps bring Katie home.  Oh I almost forgot...
drum roll please...

Hahaha sneaky I am.  Yep that's right. Today's jar was just one of many we have been emptying out.  Our grand total to bring Katie home is $541.15.  Do we have the best customers in the whole wide world or what!!!!!  Thanks to all the generous people in our house of fabric who gave their extra change for Katie.  You are the best:)!!!!:):):):)!!!!