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, April 30, 2010

Critical Care Unit

Twenty Years Ago...by Joyce

I had been to an emergency room once before with TJ. He walked into an open cupboard door and sliced his eyebrow open. One look and I knew he would need a stitch or two. I was of course worried about him, but everybody moved about at a normal speed. Today, they were flying in and out of Sarah's area. It seemed everyone was dialed up to super speed. In a strange way, I was enjoying the show. Each person had their own specific task, yet they were working in such tandem. No one seemed to realize I was standing in the room.

Finally after about twenty minutes, a woman in a white coat who I assumed was a doctor, sat down next to me and began to ask me a few routine questions. Then she asked me about Sarah's heart surgery. I shared what I could recall. I made a mental note to myself that I really needed to write some of it down, as there was such a prolonged recovery it was hard to remember it all at a moment's notice. Then she said to me, "She is fragile. We are surprised you did not damage her scar or chest cavity while you were doing CPR. We do not see any signs of internal bleeding."

I was confused. I replied, "I did not do CPR." "Oh, I thought the paramedic said you had before they arrived at your home, she replied." "No, I performed artificial respiration." "That's the same thing," she said. "Not really", I replied, "with CPR you do chest compressions, I've taken classes in CPR. Sarah's heart was still beating, she needed artificial respiration to give her oxygen for her brain." The doctor replied, "I've never heard of that, will you excuse me for a minute."

As she walked out of the curtained area, I started to question my own sanity. A few seconds later, she returned with another doctor. He introduced himself as the chief resident. Of course, I said to myself, we are at a teaching hospital. He asked me to explain what I had done. So I repeated the story. "That is a very old method," he replied, "but had you done chest compressions I believe it would have been more damaging to your daughter." And that's when my legs went a little wobbly. Why did I recall that class all the way back in 1971? I had taken CPR classes much more recently, but I did not even think about those when I found Sarah in her crib.

A few months later, my mom brought me my Girl Scout Handbook. I went straight to the pages that describe artificial respiration.

Back to the story. Just as I was beginning to tell this additional doctor about Sarah's medical history, John walked in. Our neighbor had come over when she saw the ambulance at our house and offered to stay there until John and TJ got home. She then stayed with TJ, so John could come to the hospital. I am sure someone is saying right now, why didn't she just call him? Well...this was twenty years ago, April 1990 b.c.p. (before cell phones:) I know that seems so strange, it even seems strange typing it.

The doctor went on to explain that they needed to get Sarah stabilized. They needed her vitals at a certain point, her oxygen levels, her blood gases etc. before they transport her. Transport her? Where are we taking her? "Oh didn't they explain this when you checked in, your insurance doesn't cover care here. You need to be over at the Cleveland Clinic." And that's the moment that I realized health insurance rules the world. Hmm...seems nothings changed in twenty years.

After about twenty four hours in the PICU, they announced that we were ready for transport. It had been determined during the night that Sarah could not breath on her own, so she was once again intubated and connected to a ventilator. This meant she needed the critical care transport unit. So we sat and waited for a while. Then all of a sudden a nurse throws the curtain back and...

Wow!!! What arrived was a team of two men and a woman dressed in total blue jumpsuits covered with colorful embroidered patches and what looked to me to be combat boots. I was in awe. They began to disconnect tubes and wires from the machines in the hospital to machines on this high tech looking gurney. For a minute or two I lost sight of the fact they were working on my daughter. I was just so fascinated with everything before my eyes. Soon they announced they were ready and asked if I had all of our belongings. I gathered my purse and jacket and we were off.

When we got to the automatic double doors, I was expecting to see an ambulance like the one we arrived in. Instead what was waiting was a much larger, intensely built vehicle that had a rainbow painted on the side and read "Pediatric Critical Care Unit." As I stepped in, I could not believe my eyes. The setup was just like the PICU. A traveling PICU. The kicker, we were only traveling about five blocks. That's how far it is from University Hospitals to the Cleveland Clinic...five blocks...

Thursday, April 29, 2010

How Much Can Her Family Take...

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


Wednesday, April 28, 2010

Artificial Respiration

Twenty Years Ago Today...by Joyce

It was a beautiful day. The sun was shining without a cloud in the sky. It was the first Sunday we were together as a family of four since Sarah had come home from a two and half month hospital stay following her open heart surgery. TJ was just barely two. His life had been turned upside down once Sarah's recovery had taken the lengthy route, so after lunch John suggested he take him to the park to play. I was happy and content. It was such a relaxing feeling to finally have an afternoon to just be.

I put Sarah in her crib for an afternoon nap. Before leaving her room I turned on the Fisher Price monitor we had been given when TJ was born. I gathered up some laundry and then sat down to read the Sunday paper. After folding the first load of towels, I carried them upstairs to store in the linen closet. Although I hadn't heard any noise from the monitor, I decided to peek in on Sarah while I was on the second floor. One quick glance and I realized she was blue...

...as blue as the cover of my Junior Girl Scout Handbook. (I did not have this book with me at the time) My heart started to race faster than it ever had before, as I scooped her out of the crib and placed her on the changing table. For a very brief moment, I started to panic. I started to break into a clammy sweat. And then as quickly as I started to panic a complete calmness took over my body. It was like when a movie goes into slow motion. It was if someone reached into my brain and replaced it with one from someone else.

My vision changed, my thought process changed. All of a sudden I was back in this large room at a church in Canton that I had taken a first aid class in with my Girl Scout troop. I could vividly see the avocado and orange plaid chairs circling the room. I saw the practice manikin lying in the center on the brown and orange braided carpet. I could hear the instructor's calming voice giving directions. So I followed the directions. Only it wasn't the Annie doll I was working on, it was my own baby girl. My precious Sarah. The first few breaths seemed to have no impact. Then I could feel the airway opening. I could vaguely see her tiny little chest rise. I scooped her up and continued to blow air into her mouth and nose as I ran to our bedroom to grab the phone.

When the dispatcher answered I told her my daughter was struggling to breath. She just had open heart surgery and I needed an ambulance. She started to ask me questions and I simply replied, "I am a Girl Scout, I know what I am doing," and I hung up (You should not hang up). The fact is, I had not been a Girl Scout for several years...

...looking at my Girl Scout book today, it indicates the Health Aid badge was completed in February of 1971. It was now April 1990, yet this memory was strongly guiding me some nineteen years later.
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I continued to breath into Sarah until the paramedics arrived. They immediately took over and prepared for transport. They had me sit on the gurney with Sarah cradled in my arms. She was barely ten pounds at the time, a fragile little peanut, but a fighter to her core. I requested that we be taken to the Cleveland Clinic where her doctors were. The driver said it was too risky. Their protocol would not allow a "drive by" in a respiratory crisis. Rainbow Babies and Children at University Hospitals was closer and so that is where we headed. The ER staff meet us at the door. I watched closely as the one paramedic gave a quick report. His demeanor somehow troubled me. He was professional in every way, yet I could sense this call had bothered him...

Tuesday, April 27, 2010

Sailing Free

Twenty Years Ago...by Joyce

Finally after our initial arrival at the Cleveland Clinic on February 7th for Sarah's open heart surgery, we are home. It had been touch and go there for a few weeks. Infections on top of infections, prolonged connections to the ventilator, wet lungs, collapsing airways, plummeting oxygen saturations, additional surgeries to attempt to correct newly identified problems, life threatening blood clots and the dreaded RSV, all kept us in weeks longer than originally planned.

Grandma and Grandpa continually made the drive from their home an hour south of us to visit with Sarah in the hospital. I'm sure there were days they too feared we might not be coming home. Yet today, they were able to hold their grandbabies in the comfort of our home. Somehow the fear and worry of the past two plus months seemed far back in our memories. We were learning to take one day at a time, to appreciate each and every day we had. Just having our family back together allowed us the feeling like we were sailing free.

Oh my, we were so innocent looking in this picture. Our little family of four together once more. The future seemed bright again. John and I had a renewed energy about us. We never questioned that the worst was behind us, we were sure of it.

I had returned to my full time job as the regional director for United Way in Cleveland. I would never have survived the grueling two and half month hospital stay without my extraordinary bosses, Irv Lauber and Bill Kerrigan as well as a fabulous staff in each of the offices I managed. Never once did I worry that I would lose my job and along with it our health insurance. Having a supportive employer made a huge difference in keeping my stress level to a minimum and therefore I was able to focus on helping Sarah to get well.

Looking back, I recognize what a blessing it was that we had this day. A day to enjoy family, to relax, to regroup. It permitted us to take a breath, to replenish our reserves. It gave us hope. I find it so very beautiful that my grandmother's last journal entry ended with this sentence...hope is faith holding our hand in the dark...because little did we know that our days were about to become darker than dark...

Monday, April 26, 2010

In Loving Memory...

I have been asking my mom all weekend about Carly. I will miss seeing her cute pictures and reading about her day at school. My mom told me we will be able to always remember Carly and her sweet smile by looking at her pictures. We said a prayer for her family tonight. I hope you will too.


Please go here to pick up a button for your blog and read what Jasmine wrote today. I miss you Carly. Sweet dreams.

Sunday, April 25, 2010

Little Princess

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


Friday, April 23, 2010

When Life Seems Terribly Unfair

from Joyce...

I'm sitting at my desk numb from shock, yet tears roll down my cheeks. I am searching deep for an explanation, when truly there is none. There is no earthly way for us to understand the reasons behind a dear, sweet child taken so soon. We can only look to our own higher power and pray for caring hands and tender hearts of friends near and far to bring comfort to those left behind. For those dear members of the George family who must now go on without their precious Carly...


Carly George
Angel Wings Awarded ~ April 23, 2010

Please pray for Joany and Paul and Carly's siblings Ashleigh and Brad. Pray for their strength and guidance in the days ahead. It has been such a pleasure to be included in their family by way of Joany's blog. The world has just lost a truly precious gift.

Thursday, April 22, 2010

Thursday Tales

When I woke up on Monday, my mom was in Columbus trying to get the alarm fixed. When I came home from work that day this is where I found her...

and this is where I found her when I came home from work on Tuesday...

and this is where I found her when I came home from work on Wednesday. The strange thing is she is still in her pajamas that belong in Columbus which means she drove home in them. I tried to take care of her but she doesn't want to eat and she doesn't want to get up. I think she is really sick. I don't remember her ever being in bed this long.

Finally, last night she got up for a little bit and told my dad that nobody was allowed to eat after 10:00. I think she has gone wacky.
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Are you kidding me? Bright and early this morning she comes into my room and says, "Time to get up" For real??? "No way mom," and I pulled the covers back over my head. "Come on Sarah, we have somewhere to go and then we are going out for breakfast and then maybe we will go to Target." Ahhh food...well maybe. Target...for sure.
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Now you are really kidding me? "Mom...why are we at the Cleveland Clinic? For you...right??!!??"
HELP!!!!!!!!! Now I know why I wasn't allowed to eat last night. I hate that chair. That's it. I am going to put my ugly face on. OMG!!! My mom just threw her body on top of mine. She is shoving her legs on top of my knees, her shoulder into my neckbone, and pressing my head like it is a bowling ball. And now she is covering my mouth with her hand. I guess that will prohibit me from kicking, folding in half and pretending I'm passing out, headbutting or spitting. Those are all my best moves, so what's left? It's hopeless. Ok...go ahead and stick me.
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After about ten minutes of giving her the silent treatment in the car I said, "Mom?" "Yes, Sarah?" "I have a problem"...
You know all those Target cards I have...

they all say 'empty'. "Don't worry Sarah, if you find something you like, I will give you some money." Oh yes, I love hospital days...she always spoils me afterwards.

Hmmm....I recognize these...

"Hey mom, come look at this...these were on Kate's blog yesterday".

"Sarah, you have great eyes. Those are perfect and my favorite color too." After we paid, I asked to go to...

for lunch. I am so hungry because I haven't eaten since last night. I had chicken nuggets, french fries and milk. While we were sitting in the parking lot eating I saw a bus go by from another school district. I told me mom to follow that bus because I know who is on it. Sure enough, as soon as we stopped at a red light my friend looked out the back window and saw me. He started dancing for me. My mom said he was cute. "Mom," I said loudly, "He is just a friend." "Well he is still cute," she said. Oh brother, moms can be so embarrassing.
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I forgot to show you what I wormed out of my mom while we were at Target...

I'll be singing tonight for sure.

Celebrating Earth Day

In Celebration of Earth Day I am reposting my favorite Earth Day field trip I did with my Girl Scout Troop.

We are learning about Earth Day at the Cleveland Zoo. Instead of driving in cars, we took a special bus here to save fuel. That helps the environment.

We colored on special paper, received eco-friendly balloons and climbed on the playground that has a soft rubber mat around it made of recycled materials.

Some of my Brownie friends got their face painted. Not me. I do not like that so much. See that crazy character in the aqua cap and red hat, he is Mr. Recycle. We learned all about recycling. It helps project the earth

Wednesday, April 21, 2010

With this ring...

This is my mom's hand. Do you notice anything missing...

...her wedding rings. And I am NOT happy about it. I have been asking her everyday where are they. She told me they are in a little dish in the living room. She took them off the day we were making the eggs because the Mod Podge was so sticky. I keep reminding her, but she doesn't put them back on.

So last night I went into the living room and found them right where she said they were.

And I put them on her finger. First her anniversary band, my dad gave that to her for their 10 year celebration:)

Then her engagement ring. My dad gave that one to her in March of 1986. That's when she said, "Sarah, with this ring"...and then we started cracking up. I feel better now that she has her rings back on her hand.
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A little note from Joyce...
I never would have known that my wedding rings were so important to Sarah. To me, it is one more tiny reminder of never selling her short. Never taking for granted that just because she has Down syndrome, she doesn't feel, love, and understand. She certainly does all that and so much more. This is just one more tiny reason why my love grows stronger and stronger for this dear girl with each and every passing day.
Add Image

Tuesday, April 20, 2010

Stranded in Bulgaria

PLEASE...PLEASE...PLEASE...We have two blogging friends who are stranded in Bulgaria. I know this sounds like one of those scam emails. It is not, I PROMISE. This is all started when Shelley and Leah went to Bulgaria to bring home Kullen who is a young boy with Down syndrome living in a mental institution. That part went as planned. It was a beautiful departure. Then the Volcano hit and all flights are grounded. They are running out of money due to having to stay in the hotel for much longer than originally thought and now the plane flights, once they can even get one, are grossly expensive. It seems the US Embassy is being of little help. In order for them to book their flights they each have a donation button. Here are their blog links:


Gathering them from the East

Garden of Eagan

Monday, April 19, 2010

Seize that Line

Happy Joyce here...Remember my rant last week...we switched to AT & T u-verse on Tuesday and all of a sudden the ADT security system wasn't working properly. Initially I got a bunch of mumbo jumbo from AT & T, but then after sharing the story about Sarah's airway frequently collapsing and the need for an ambulance pronto, ADT agreed to send a technician out this morning and the installer agreed to return, although he insisted there was nothing else he could do.

Then yesterday afternoon I get a call from TJ. He just tried turning the television on and it is not working. U-verse is frozen on the screen - you have got to be kidding me. After several attempts to reboot the machine it is determined that a new box needs to be delivered. I asked TJ to see if they could do it today.

Bright and early this morning...original AT & T guy shows up. But ADT called and said they were delayed one half hour. "Oh I'm sorry, I can't wait around for that. I have to go to my next call." And with that he bolts out the door. Hmmm...

Twenty minutes later second AT & T guy arrives with the new box. I mention the problem with the security system, "Oh let me look at it, I bet I know what's wrong." Down on the floor he goes in the back of the closet. Tight fit. He doesn't seem to care. "Here is the problem. This jack is not wired properly to be able to seize the line." There is a knock on the door. It is the technician from ADT with a smile on his face. I take that as a good sign.

They immediately start conversing, agree what the problem is, fix the issue. We test the alarm. It works PERFECTLY!!!

I wonder? Do you think that broken box was BY CHANCE or BY DESIGN? I am pretty sure the original installer would not have fixed the issue, mostly because he didn't want to take the time or put in the effort. Attitude is Everything!!

Here's a big shout out to Jarred from AT & T and Ron from ADT. Thank you for giving this mom peace of mind that with the push of one button an ambulance will be on it's way. My Sarah girly thanks you too.

Sunday, April 18, 2010

Craving Buckeye Filling

Do you ever get a food craving? You want something so much you just go into the kitchen and start to make it?

That was me late last night. I was craving the filling that goes inside Buckeyes. You know, the candy Buckeyes. So I got out the peanut butter and put it into a bowl. And then I was just about to put flour in when my mom walked in. "Sarah, what are you doing?" Uh oh, busted. "Oh nothing," I said. "Oh Ok, whatever," and she walks out of the room. Then she comes back with the camera, "uh sarah, if you happen to be making Buckeye filling, you need the powdered sugar, not the flour." "OK, mom."

Good thing she came in when she did. But darn this container is harder to get open.

Ok I have to concentrate now. I wonder how much I should pour in? I guess I'll just see how much comes out.

Oh yea...that's good. "Dad...what are you doing here?" "Oh a little birdie just told me you are making Buckeyes."

Oh man!!! Do you think I have to share now??????

Saturday, April 17, 2010

Super Special Saturday

When I woke up today, I knew we were heading to Hudson for Dirk's book signing once my mom and little brother were done with band contest at his school. I did not know I was going to have a surprise. Look who met us at the Library...

my bestest girl friend Lisa!!! So we all went in and got to see Dirk...

I can't show you the books he signed though because it is a surprise for some people we know. I forgot to mention the other day that Dirk is hurt. That is why he is home right now. So we are praying that his shoulder heals good and he will be back to pitching very soon. OK, now for the best part...

I got to introduce Lisa to Bonnie. My mom told everyone that these two ladies have been so super special to me. I'm so glad they got to meet. Look at our outfits. It looks like we planned this picture doesn't it? Nope, it just happened that way. We all pulled sweaters out today because the temperature has plummeted into the 40's again and it was snowing. Bonnie and Lisa live really close to each other so we are going to try to get together for dinner one night.

Thursday, April 15, 2010

The Bullpen Gospels

I have a little story for you. A GREAT story really. I have talked a lot about my music therapist Bonnie. She is just the greatest. I have been with her for a long time. One day at one of our share days there was this guy there helping her. He was very handsome. Before you know it, she tells me she is getting married. I was so happy for her. She had the prettiest wedding at a big huge park pretty close to where we have our music sessions.

Bonnie and Dirk looked so amazing. My mom and I made them a card for their wedding and on one side we put music notes and on the other side we put baseballs. Sounds a little odd doesn't it....

Not when you see Dirk in his work uniform:) Yep...he is a pitcher. Now when Bonnie met him he played in the minors. Then one day he got a call...a big call...that put him where he always dreamed of going...Next thing you know...Bonnie was driving to Toronto where Dirk was playing with the Blue Jays.
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Now back to the beginning of the story. My mom was eager to know a little bit more about Dirk because she is quite fond of Bonnie. So Bonnie told her that Dirk wrote a blog for his hometown newspaper, The Canton Repository. My mom was so excited because that was her hometown newspaper too. She soon discovered that Dirk was an excellent writer and he seemed like a good guy. Then one day he wrote about visiting kids in the hospital and he had a genuine understanding about what that must be like. My mom left him a message that day. She wanted him to know that as someone who has spent a lot of time in the hospital it really does make a difference to have a visitor in a baseball uniform.
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Well now to the really amazing part of the story. It turns out Dirk is a REALLY awesome writer. As of today...his brand new book...
is # 15 on the New York Times Best Seller List. How cool is that!!!!!!!
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If you live in the northeast Ohio area...Dirk is having two book signings this weekend:
Friday, April 16 at Borders on the Strip in North Canton from 7 - 9
and
Saturday, April 17 at the Hudson Library from 1-3. That's the one I'm going to. See you Saturday Bonnie and Dirk.
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Check out Dirk's website: http://www.dirkhayhurst.com/

Good Luck...

...and safe travels. We LOVE you!!!

Wednesday, April 14, 2010

Late Breaking News...

I received an award today from my bus driver.

This is really special because it is from Greg and Cindy. Greg was my driver for a long time. He recently passed away and that was very sad. Now I have this to remember him. Cindy is my new driver. I like her too.

Letter Jumbo spells Help...

Joyce here ranting(sorry)...Once upon a time when we were basically living in M-35 at the World Renowned Cleveland Clinic, I orchestrated a major coup...I secretly arranged for Sarah's Cardio-Thoracic surgeon, her Cardiologist, her ENT and her Pulmonologist to all arrive in her room at the same time and talk to one another, instead of using me as their communication board. Not a small feat as some of you have experienced. It was brilliant. Nurses still talk about it to this day.

So why...is it so impossible to get the technicians from...


and

to communicate with one another so Sarah can have her high speed internet connection, my boys can have their U-verse and I might be able to call 911 should I need an ambulance? or worse yet when a burglar is in my house trying to steal my sewing machines:) All I need is for the security system to be able to seize the line in the event of an emergency. Surely, we cannot be the only customers with these two blue empires trying to do this? Does anyone out there have this combination of carriers?
UPDATE: 8:00 am Monday morning techs from both companies will be arriving to work in tandem to hopefully get this functioning properly...I must note that both companies have been trying to help resolve this, especially when I told them about Sarah and her frequent airway collapsing issues and the number of rides we have already experienced in the back of ambulances. I would also like to apologize to our neighbors who experienced frequent intervals of screeching sirens coming from the roof rafters yesterday afternoon. I'm sure that must have been annoying.

Tuesday, April 13, 2010

My Poker Face

maamaaamaamaaa poker face...remember the other day I showed that video of me singing in the car to the new Now CD I got...

...well last night my most favorite ever music therapist had a surprise for me...

yep you guessed it...Lady Gaga...My Poker Face. Oh my gosh, we were having such a good time we even invited my mom in for a few minutes.

video

Saturday, April 10, 2010

Sarah is Home Again!!

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