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.

Sunday, February 28, 2010

I Surrender Sarah to You

Twenty Years Ago Today...from Great Grandmother Hillick's journal...

Saturday, February 27, 2010

Will she ever get out?

Twenty Years Ago Today...from Great Grandmother Hillick's journal...

Thursday, February 25, 2010

Somehow Plays with Minnie Mouse...

Twenty Years Ago Today...from Great Grandmother Hillick's journal

Wednesday, February 24, 2010

Tuesday, February 23, 2010

1 Million Pillowcase Challenge

a message from Joyce: If you have been following along for the past few days, you have observed Sarah learning to sew. This has been a dream of mine from the day she was born. Yes, this room that we have been working in is actually in our house. Up until recently, Sarah has not had much interest in joining me as I retreat into my "woman cave" each evening. Then all of a sudden, she took notice of some amazing fabrics I was receiving. I think she got the creative fever too.

So I set out to find something I could start her on that would be easy and with quick completion so she would have instant satisfaction. Pillowcases came to mind. Oh the power of this Internet. I searched pillowcases and up came this amazing project, the 1 Million Pillowcase Challenge.

When Sarah came home that day, I showed her the website and started to read her the description on this promotional card...

As soon as I got to the word cancer, Sarah's face lite up, she became excited and immediately said "Kristen. I will make a pillowcase for Kristen." I just have to say it is moments like this, that I want to gather all the naysayers of Ds into a room and let them chat with Sarah. Let them see, just how alike she is.

So today, there is a post on Kristen's blog that will have Sarah absolutely beaming when she sees it. Please go take a look and be sure to leave Kristen some love. She is one very brave gal.

Finally...the Big Reveal least a peak...

I finished them both just in time to mail for a big involves a very brave young woman and a bell...but I am going to let her tell the next part of the story. You must go to THIS BLOG to read about it. And please say a prayer for my brave friend. She is going to have some tough days ahead.

Monday, February 22, 2010

It's all in the Details

I learned to gather ruffles.

I already sewed onto the bigger piece.

Now I am taking the pins out...

Sarah is off Respirator

Twenty Years Ago Today...from Great Grandmother Hillick's journal...

Full Steam Ahead

It's time to put it on the ironing board and...

open up the seams. That will help it not be bulky when I fold it in half.

I love to use the iron. It is hot, so I have to be very careful.

A little shot of steam and I'm ready for the next part.

I Advanced to the Monster...

...that's what my mom calls this machine, the monster. She says the monster is to be feared because it sews and cuts at the same time. It has two really sharp blades and it will cut anything in it's path.

So I had to be extra careful to keep my hand where she taught me. On the side gently gliding the fabric to keep it in place. It does give a really nice edge to the seams.

I Heard a Pin Drop

I've discovered taking the pins out is not easy.

It's like working with the occupational therapist.

I won't give up though.

Oh my this is hard. Then guess what? My mom showed me a trick. You turn this purple thing over and it is a magnet. They all stick like magic!!!

Sunday, February 21, 2010

Sarah's Lungs have Collapsed

Twenty Years Ago Today...from Great Grandmother Hillick's journal...

What does Critical Condition Mean...

Twenty Years Ago Joyce

What does critical condition mean to a two year old? I pondered that question the entire drive home. Today we hit the two week mark. If things had gone as planned, Sarah would be home from her VSD repair. Instead, we had the first gut-wrenching conversation with the doctor that her condition had taken a critical turn for the worse. Up until this day, the doctors had remained positive. Each complication was described as a mere step backward, a minor set-back. Today, the words were not as hopeful. I felt I needed to prepare Sarah's big brother. But he was just a baby himself.

Earlier in the week I had bought him a doctor's kit. I thought the best approach to his understanding her hospital stay might include role playing. And sure enough the first time he saw her, he pretended to give her a shot with the big play syringe and then tried to put the molded plastic bandage on her tiny arm. But now I feared, he needed more information. Greater preparation for the possibility that she might not survive.

I arrived home in time to give him his nightly bath. Then I took him into Sarah's room and we sat in the rocking chair. We looked around and named all the things that she liked to play with. We counted the lambs on her wall border. We sang songs. Then I told him that no matter what happened he would always be my baby. I would always love him just like I would always love Sarah no matter whether she was here on earth or up in heaven with the angels. He turned his sweet head, opened his big brown eyes real wide and told me, "I awwway wove Sarah too." My heart melted as I smiled about the lack of his "l" development at the time.

I will never forget that moment for the rest of my life. I think that was a glimpse into the future. Of course I didn't know it at the time. In that little exchange, TJ let me know that he was in this for the long haul. He was going to be by my side no matter what. And he has. Children, truly God's miracles that permit us to see the beauty of life. I am so blessed.

Step on the Gas

I decided sewing is like driving. First we took a few practice runs with scrap material.

Then we brought over the real thing and my mom said, "Sarah, step on the gas."

Do you see the comb in my hair? I have to wear it when I am sewing so my hair doesn't get in the way. I have been working so hard to let it grow, I would hate to cut it off by accident.

My mom taught me how to guide the fabric on the side of the machine. I don't want my finger to get caught under that needle. I am almost at the end of the seam.

Saturday, February 20, 2010

Practice Makes Perfect

It is time to start cutting.

My mom made me a practice row so I could get the feel of cutting fabric.

It is a lot like cutting paper but it is best to leave it flat on the counter.

Once I got the hang of it, I was rolling. My mom said my OT would be so proud of me. Oh speaking of that, head on over to Ellen's blog and leave a tip about play/therapy ideas and you could win a $50 gift certificate to CVS.

Friday, February 19, 2010

Ready, Set, Plan...

My fabric is dry and so I spread it out on the counter. Now what do I do next?

Hmm, I know that I am going to have to cut. So I got the good scissors out.

My mom came to help me. She said it is always a good idea to plan things out before cutting. We are studying the directions.

OK, I think we've got it...

It's Prep Time in the Washer

I think it will be a good idea to pre-wash the fabric.

I can do this. I like to work the washing machine.

I gave the fabric a big whoosh to open it up.

And now in it goes.

I think I will put the blue one in too. Ok, I'll be back in a little bit...

Thursday, February 18, 2010

An Exciting New Project

I am so excited. I have a new project.

I know just what I need to get.

It is going to be a surprise for someone I know.

Oh this is perfect because she loves the Disney Princesses.

This is making me very happy.

Now I am off to the other end of the store to find some matching fabric.

I think this pink one is a good match.

Well that was a successful shopping trip. Time to go home and get busy.

Wednesday, February 17, 2010

Funky Chicken for Dinner?

A follow up from Joyce: This morning while Sarah and I are doing our typical get ready routine she says to me, "Mom, are we having that funky chicken for dinner?" baahhhh... how could I ever let this comedian live somewhere else. Seriously, no one makes me laugh more than Sarah.

So after yesterday's bizarre sequence, I woke up feeling refreshed and energized. Then I tried to establish my high speed connection to the whole wide world and it was not happening. No signal. Just as well. I was super productive around the house, running errands, tackling my to-do list at the office and Matt and I even hit the grocery store on the way home.

Which put us home well after Sarah. I know I have written on here before that Sarah does carry keys to let herself in the house when she gets off the bus. She loves doing it. And after yesterday's post, I want to make sure that I am not stifling her independence. I do think I need to be more aware of that at times.

At any rate, I hear Matt yell from the top of the steps, "Mom, bring the camera upstairs." "Oh boy, now what?" I say to myself. For some reason, I'm thinking water damage from ice damns on the roof. Nope. Instead it is for a Sarah sighting. This is what he found...

Oh please no pictures.

Sarah what's wrong? Does your head hurt?
Are you hot?
Are you sick?
Do you have pain?
Why do you have the cloth on your head?
For my brain. I'm thinking.

Then the phone rings. It's TJ. So Sarah has to tell him about her brain. While I listen to what she has to say to her brother, I am reminded of what I wrote in my response to Ellen yesterday: my goal is for Sarah to be happy and content. And right now she is the happiest and most content person I know. And with that, just wait until you see the awesome project we are working on...

Tuesday, February 16, 2010

In a Funky, Funky Chicken Mood

A message from Joyce:

Tonight at dinner I told everyone I was in a funky, funky chicken mood. Sarah said, "What kind of chicken?" I repeated funky, funky. I can't really put words to it. Something just seems off.

It started with Matt being late to school. John usually gets him up, but unbeknown to me he went out to shovel the driveway and I fell back asleep. Into a deep, deep sleep which is rare for me. When John came back in he asked, "What's wrong with Matt?" "Nothing," I mumbled. "Why's he still in bed then?" "Oh $h*t," now I was awake.

Then I had to call the insurance company to let them know that TJ was involved in the 45 car/semi pileup on I-71 near Columbus yesterday. Did you see it on the news? It closed I-71 for hours. Apparently the newswire made it all the way to Tokyo. If you have been following our story for long, you may recall that this exact time just two years ago, TJ was hit by a semi on this same highway. Fortunately, once again he walked away and this time his car was at least driveable, but does have significant damage.

Then I opened yesterday's mail. I got a lovely notice from my credit card company. Just because our wonderful politicians have decided to stick there neck into credit issues, I now get to pay a new $100 a year fee. Oh and by the way, your new interest rate will be 26.99%. WHAT!??!! That's the thanks I get for paying my bill on time for years and having an excellent credit score, despite having thousands of dollars of medical debt.

Then there is this whole Sarah Palin thing. It disgusts me. I feel like Down syndrome is being drug through a mud bath. I hate the way this is being made into a political quagmire.

It doesn't help that I have shoveled the driveway three times today. And it is still snowing.

I think what furthered my funky, funky chicken mood is a blog. Ellen from To the Max, who I so admire, wrote an awesome post today about future employment. It wasn't her words that hit me though. It was the comments. I'm not even sure why I took the time to read them all, but I did. I responded to one of the comments. But what has me more bothered is a pattern that emerged in a few of the responses. Basically it goes like this: the mother/grandmother of an adult with a disability babies/shelters/alienates said person, but once they get into a group home they thrive. And it made me stop. Stop. dead. in. my. tracks.

It made me stop and really look at myself. Do I baby Sarah? Am I getting in her way of personal growth? I do want her to be able to move out. There is one problem though. Sarah is number 2004 on the wait list for a waiver to pay for a group home placement. She will likely be into her 30's before her number is called. And so I have been pondering this all day long. Do I shelter her too much? This question would probably have kept me up all night, except...

...just a few moments ago I read a comment on our blog. From a dad. A dad who did let his daughter go, all the way across the country to serve as a missionary. So on Valentine's Day 2010, she could knock on our door. And we invited her in. Why? Because I have gotten to know many friends from our blog who have shared their Mormon faith. And with that faith, I understand there is a greater mission, a divine plan. One that I need to remember will guide me, especially during the funky hours.

Sarah Palin's Facebook Post today...

For those who do not follow Sarah Palin on Facebook, here is her post today:

Fox Hollywood: What a Disappointment

People are asking me to comment on yesterday’s Fox show that felt like another kick in the gut. Bristol was one who asked what I thought of the show that mocked her baby brother, Trig (and/or others with special needs), in an episode yesterday. Instead of answering, I asked her what she thought. Here is her conscientious reply, which is a much more restrained and gracious statement than I want to make about an issue that begs the question, “when is enough, enough?”

“When you’re the son or daughter of a public figure, you have to develop thick skin. My siblings and I all have that, but insults directed at our youngest brother hurt too much for us to remain silent. People with special needs face challenges that many of us will never confront, and yet they are some of the kindest and most loving people you’ll ever meet. Their lives are difficult enough as it is, so why would anyone want to make their lives more difficult by mocking them? As a culture, shouldn’t we be more compassionate to innocent people – especially those who are less fortunate? Shouldn’t we be willing to say that some things just are not funny? Are there any limits to what some people will do or say in regards to my little brother or others in the special needs community? If the writers of a particularly pathetic cartoon show thought they were being clever in mocking my brother and my family yesterday, they failed. All they proved is that they’re heartless jerks. - Bristol Palin”- Sarah Palin

Monday, February 15, 2010

Eighth day post surgery

Twenty Years ago Today...
...from Great Grandmother Hillick's journal