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.

Saturday, March 8, 2014

It's Me Sarah

Have you missed me? I am going to show you what I have been doing the last few months.


Meet Patrick. He is just eleven days old. One of our customers shared him with me. Before I could hold him though I told her I had to sit down in my chair so we would be safe.


I love babies so much. I like to kiss their soft little cheeks. 


Patrick has a big sister. I sensed that she was a little jealous so I asked her to come over and take a picture with us. 


Then I asked Patrick's mom to take him so Molly could sit on my lap too. Big sisters are more squirmy.


Look at this. Finally my dogs are home. All of them.


Now I will be able to sleep so much better. They have been over in storage for six months. I think they missed me.


It has been snowing so much this winter. This was my mom's car when we came to the store one morning...


And this is what it looked like when it was time to go home.  


It has been so cold too. So I have stayed in the house a lot. I have a new desk I can sit at in our new Buckeye room. It was TJ's old bedroom but he's married now so he won't be living in here. How do you like our A.J. Hawk jersey?  He played for Ohio State wearing 47. Like 47 chromosomes make up Down syndrome. I like that.


Can you believe this? On one of the coldest nights ever, the power went out. So we had no heat. I slept under so many blankets I could not move. My mom even put a hat on my head. The next morning I came down to be next to the fireplace. It still works because it is gas...


...but look at this. It is so cold in our house there is ice forming around the gas turn on switch.  The thermostat says it is 54 degrees in our house.  So cold we decided to leave and go to the store where there is power.


So I decided to start designing a new quilt.


I really like playing with these charm squares. Oh guess what? I have a bunch of new quilts for sale in my etsy store.


I am so happy today. Can you guess where I am?  

  

LOL! My mom and me are taking selfies. You know pictures of ourselves. There is no body around us because my mom bought tickets in a section with no people. She didn't want me to catch any flu germs that are floating around.


This is so exciting!!! Here they come....


There's Minnie!!!


I love Disney on Ice so much.  It is my very favorite thing to do.  My mom says she loves how every year I am so excited even though we've already seen this show so many times. We always come back.


Oh my goodness. I scared my mom so bad. It is like 2:30 in the morning and I decided I wanted some chocolate chip cookies and apple juice. So I snuck downstairs to get it. I was sitting in my favorite chair when she came into the room and she screamed. It was funny,


My mom and dad have been spending a lot of time helping my grandparents get their house ready. So my brothers have been entertaining me. TJ and Julie have an underground garage at their apartment so my mom just drives in to get me and I never have to go outside where it has been zero degrees for the whole month. 


Today Matt is staying with me so I made us a snack. Carrots with some vegetable dip. I love that.


My mom is teaching me how to use the cash register at the store. It is fun pushing all the buttons.  But I have to be very careful doing the credit card machine. It would not be good if I charged a customer too much.


I am back to music therapy with Miss Bonnie. Look how cute her hat and scarf are.


I love playing the drums.


This is D. J. She comes to our store to sell fabric. I get to pick out whatever I want to have in the store. I am showing her how I have my cell phone programmed with pictures.


Then I went upstairs and became really silly.


My mom thinks I have cabin fever. I said what? Is that like Beiber Fever? Oh man did you hear he got arrested again.  Bad boy. 


Now I am popping bubble wrap. Now my dad thinks I took silly pills. Nope. I did not. It's just me Sarah enjoying life.


How exciting! A box came to the store for me. What? It is full of chapstick.  That is not so exciting. But I need it so that is good.  Ok I have to go now. But first I want to show you something...


This is my new schedule. It shows when I am working and where I am having dinner and sleeping because now I have two bedrooms. It is so exciting. I stay with my grandparents now. I am going to write a big post and tell you all about that very soon.  See ya. Goodbye.

Tuesday, January 28, 2014

A Life Defining Traffic Jam


Five years ago today the roads were clear of snow, yet this traffic jam during early morning rush hour changed my life. Dramatically. Sarah was yet again in the hospital with pneumonia and respiratory distress. Her fragile body was so weak and simply not responding to the medications that should be helping. My husband and I had developed a routine over the years to care for Sarah while she was in the hospital. We never leave her alone. John would stay with her during the day and I would spend the night with her.



This stay was no different, except we had a visit from the social worker the night before. She had handed me a list of hospice providers in our area. Secretly, we were loosing hope, but this confirmed the docs were as well. I was non-committal at the time, which likely prompted her to write in her report that "mother is in denial." When you're being told your child is living on borrowed time, I suppose denial is a safe place to hang out for a short time. I shoved the papers into my laptop bag thinking to myself that I would spend some time researching their offerings at work that day. 

John arrived at the hospital after dropping our youngest off at his school. I quickly left to drive the short distance home to shower and then head for work. I was the Director of Strategic Planning, Government Relations & IT for a large not-for-profit. It was my third stint at this organization. I had been working there almost twenty years before when Sarah was born, during her open heart surgery, and the many months she spent in ICU with massive complications. The leadership at the time could not have been more supportive of our circumstances. Not only did I get my job done, I thrived, earning several promotions.

This time though things were different. The minute I pulled onto the freeway from my East 185th Street entrance and saw the back up of cars, I had a pit in my stomach as I knew my boss was a clock watcher. The time stamp on the photo indicates it was 8:21. There was no possible way I could make it to work on time. 



As I sat in the lineup of slow moving traffic, I started to think about the conversation I had with the social worker the night before. I wondered if this was truly the beginning of the end, or were they just giving up on my Sarah. This was not the first time in Sarah's life that the doctor's were stumped by her symptoms. By the time I was pulling off on the Chester Ave. exit, I mentally created a checklist of questions I had for the doctor. I was not as willing to give up on her just yet. 
  


I parked the car in the downtown garage and quickly walked the alley to enter the building from the back. The elevator opened on this lowest level and I stepped in. It stopped on the first floor...to pick up my boss. He looked at me and asked if I was just getting to work. Clearly, wrapped up in a winter coat and boots there was no denying my late arrival. I started to explain that Sarah was still in the hospital and I stay with her at night due to her limited mental capacity and communication. He stopped me mid sentence..."Maybe you need to plan your mornings better so you can get to work on time," I heard him say.

I was speechless. I fought back the tears that wanted to flow down my cheeks. There was another person in the elevator with us. To this day though, I have no recollection of who it was. The elevator stopped on the floor I shared with this man. I waited until he stepped off and then I walked slowly to the women's restroom. I threw my coat on the chair, and went to sit in a stall, not because I needed to use it, rather to cry the pain from my heart. How could someone be so cold? So uncaring, I wondered. I pulled myself together and then went to my office and closed the door. I sat for an hour or more just staring out the window at the buildings surrounding us collecting my thoughts.


And then I logged into my computer and typed up a letter of resignation. It just so happened that we had a meeting that afternoon. Just the two of us. My boss and me. I tried to be cordial, but the moment he started to ask about a project I was working on I told him maybe he should hold that thought and I handed him the letter. On the surface, I was calm. Deep down I was seething. I was angry. I was crushed and bruised. 

I offered a two week notice, though Sarah's hospital crisis prevented me from actually fulfilling the time. I knew all of my energy needed to be focused on her. I worked closely with the docs and social workers to arrange for home care. We had decided against hospice services, so I was trained to administer the medications, breathing treatments and physical therapies to keep her comfortable.



It took several weeks before we saw improvement, but one night Sarah asked for pizza and she wanted to sit at the kitchen counter to eat it. That was our first glimmer she was turning the corner.



Today, when I think back to that cold morning in late January 2009, I can't help but question the timing of the accident that caused the traffic snarl, the boss who just happened to get on the elevator at that exact moment. His snappy attitude. The social worker who was assigned our case and was so willing to work with us. Was it all by chance? or perhaps by design? 

If you have been following us for long, you know how our story is playing out...the special bond with Kristen Kirton that lead to the opening of our quilt shop, the hundreds of pillowcases being created in Sarah's Sewcial Lounge in memory of Kristen and being shared with others during their hospital stays. The many new friendships we have developed over this time. The thousands of dollars we have raised to support families who are adopting kiddos just like Sarah from orphanges around the world. And the fact that Sarah was hospital free for more than four years following that January day. 

I now recognize that sometimes our greatest gifts in life are not wrapped in pretty boxes with great big bows, rather disguised as something other than what they first appear. For that, I am most grateful. And Mike, if you're reading this, I thank you.

Sunday, December 29, 2013

Celebrating

It's that time of year when we celebrate!


It started off pretty fun. My mom told me we were going to be sleeping at our quilt store for a night. How crazy is that! But we had to get a new window at our house and they were painting it today. It is really bad for me when I breath in the smell from the paint.


So I got all cozy in my chair and then we turned out the lights. My mom never went to bed though. She stayed up working all night long. Then we went home to take a shower,


My grandparents came up to help us celebrate. We went to see their new house. They should be moving pretty soon because they already sold their old house. I can't wait.


Then we met my dad at Brown Derby for dinner because it was his birthday!


After we had dinner we went back to our house to open presents. 


Haha...look at this. I have a bunch of McDonald's cards. I can buy chocolate chip cookies and apple juice for a year!


I love to open presents.


Look who is finally home...my little brother Matt. He works at a grocery store and has been making a lot of money this Christmas season.


Me and Julie. We are sisters now that TJ got married. I love having a sister.


Here I am with all the things I need to make Christmas dinner.


I had some wrapping to do.  


I am very good at cutting the paper.


And helping to tie the bows.


I think I might be able to tie this one by myself.


Look what Santa brought me. Gray Uggs to wear to Ohio State football games. Perfect!


Matty came back to see me. 


And Jessica came too. They make me laugh.


After dinner, we decided to sit and choose our Angels from the Reece's Rainbow Angel Tree. They are mostly orphans with Down syndrome. They need a loving family because they should not have to live like that. So we help by donating money. I picked Savannah. I hope I can follow her home and maybe one day meet her.


I was the record keeper. I was writing down the little kiddo that each person selected.


My dad picked Edgar. He is such a cute little boy. He even looks like my dad. My dad said we would bring him home if we could, but he is too old now because of the adoption laws. That is too bad. My dad is the best dad ever.


Remember how I had to sleep at the store because of the new window?  Well my mom said the only thing she wanted for Christmas was for the blinds to get put back up so she could move things back into this room.  So while I watched Christmas movies that is what they did.  Then my dad vacuumed for her.  She was very happy.


Sometimes my mom has a hard day. So I give her lots of hugs and kisses. 


Look at this. I met a new friend. This is Henry. His mom, the one standing next to me, has been following this blog for a while and she decided she wanted to come meet me.  So they came and they even brought me a little present. He is so cute. I think his Grandma really loves him. He jumps into her arms alot and she smiles. That was the best way to end the year. Happy New Year everybody. See you in 2014!