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.

Sunday, August 30, 2009

Celebrating my 20th Birthday

I left for camp on my 20th birthday so we did not get to have a celebration on the 9th. Finally last night on the 29th everyone was home, so we had dinner and a cake.

There were so many candles on my cake I did not think I would be able to blow them all out.

My mom and dad and TJ and Julie helped sing Happy 20th Birthday to me and then
Matt helped me blow out the candles. This year it was like my birthday lasted for twenty days.

Just a Reminder of my Riding Skills

Oh...forget the drama, c'mon mom. Would you want to ride a horse named Jackie-O? Where is my Ridge? I want Ridge back.


Saturday, August 29, 2009

Drama at the Barn today

Our Sarah is one smart gal. Always the thinking one. Crafty, clever and in control.

For the past four years, Sarah and I have been making the 45 minute drive from our house to Strongsville for therapeutic riding at Camp Cheerful. We have written about it many times on this blog. I know better than to schedule anything else on a Saturday(including the Buddy Walk in Cleveland today) because she looks so forward to riding.

Most weeks are pure delight. Sarah has made so much progress in the past year. She is manuevering and trotting on her own and quite pleased with herself. This fall session we have a new instructor and she is ready to push Sarah a little. One way to do that is by having her ride on a faster horse.

So today we get there about ten minutes early. The instructor comes over and tells Sarah in her perkiest voice that she is going to be riding Jackie-O. As she walks away Sarah gives her that look, you know, the disgusted teenage girl look. The one that says, "Like h...e...double hockey sticks, am I riding that horse."

But she mounts without a complaint. Hmm.... So I watch for a minute or two and Sarah gives me the thumbs up. That's our cue that I can leave. Sometimes I go fill the gas tank or grab a coffee. Today, something told me I better stay put. So I sat in the car and read.

Sure enough. Forty minutes into the ride, just about time for the trotting to begin, I see a volunteer running for my car. "Sarah needs you, quick." I walk over to the big double doors with the gate, which has already been opened for my arrival. As I step into the ring, my foot sinks into the dry, dusty dirt. While quickly scanning for piles to avoid, I think to myself, "Good thing I'm wearing washable flip flops today." I'm not overly alarmed, as I had been previously warned by that look on Sarah's face there might be drama today.

Just as I glance up, I see Sarah slouch forward on the horse like she is about to faint. Oh, Lord have mercy. They have already removed her helmet and by this point she is surrounded by the instructor and many volunteers, all falling prey to her acting abilities. I look for Doug who has been with her since she started at this barn. He knows her well and he doesn't seem too ruffled. I take his cue. Just as I am about to tell her to "Cowgirl Up," rodeo lingo for get back up and get a move on, she takes her hand and brushes it across her forehead in great dramatic fashion and then begins to slide off the horse.

Quicker than quick, I see she is about to fall into the dry dirt. I leap forward and catch her under her arms as she goes limp like a ragdoll. I look at her and smile as I know exactly what is going on. Then I jokingly say " C'mon Sarah, are you kidding me? I have black seats in the car."

By now, I realize the damage has been done. She's off the horse, the young volunteers are traumatized, who knows what the instructor is thinking and there's only ten minutes left of the session. So I gently drag her just outside the barn. All eyes are on us now. She wants to sit, but I tell her we better go to the car. I go inside to get some wet paper towels to get the dirt off my hands before driving off. No sooner does Sarah see it, when she grabs it from my hand and proceeds to do this...

I had to grab the camera. Don't you just love the finger in the mouth?!!! Thinking...thinking...thinking..."How am I going to convince my mom that I need McDonald's for lunch." Sorry Sarah, I'm on to you girlfriend:)

Thursday, August 27, 2009

Good Report Today

I brought this note home today.

My mom said she was very proud of me because I have a great attitude and I have been working hard.

Wednesday, August 26, 2009

I am Exhausted

I was so happy when the bus turned on my street.

Today was my first day back at CEVEC and I have a new job this year.

But right now I am exhausted.

I just can't wait to get inside to take a nap. I will tell you more about my day later. See ya.

Tuesday, August 25, 2009

I Keep on Lovin' You

...I already had this series on Marriage/Divorce ready to go before John and I received those phone calls on Friday. But gosh, it was such a better story than the one I had in que, I just knew I had to do a partial rewrite. It is such a great example that just when you think things are humming along, that tsunami wave blast comes in.

No this picture isn't a tsunami, it's an example of the ongoing effort to keeping it alive. The marriage that is. Working to strengthen the bond. I think it is also another touching photo by Peggy Farren, so no copying please.

I really cannot over emphasise the power of communication. In the Newsletter of the National Down Syndrome Congress Volume 32 #4, Renee Schultz wrote a great piece on marriage titled, You Are An Important Two... It notes that she and her husband Ron Baer offered a workshop at the convention in Sacramento. If anyone attended, I would love to hear how it was.

Ms. Schultz lists a few suggestions for couples that I think are excellent:
-Talk and listen to each other. The quality of your communication is the most critical factor in marital satisfaction.
-Validate each other - notice and express what you appreciate about your partner
-Disclosing feelings is critical including difficult feelings. Fear cuts off communication and can separate and polarize partners.
-Anger is normal, but how we express it is critical.
-Take responsibility - no blaming your partner.
-In a direct and positive way, let your partner know what you need
-As a couple, take time away from your children for the two of you.

I personally think that last one is the hardest for our circle. First finding a sitter that is qualified for the special medical needs our kids have is often tough. Even if they do not have medical challenges, just finding a sitter as our child with Ds ages can be difficult. So John and I have tried to make our bedroom a sanctuary of sorts. A place where we can be alone. We recently bought a new bed and paid more than we normally might have for the extras knowing that is our place. Our little retreat. Sometimes we have to compromise on the location but being together is so important.

As I close up this topic, you might be wondering about the posts that I took down. At dinner that night, both John and TJ told me to put them back up. Before I did though, I added some content to make the reader a bit more clear on the direction the posts were going. I could see the point trying to be made, I just did not agree with the delivery. Communication. Honest, truthful and tender communication. It's the key.

P.S. I don't often put music on here but as I was driving to the grocery store on Friday night still shaken from the ordeal earlier in the day, I popped in the new Reba CD. This song, which also happens to be the album title, brought it all back together for me...Keep On Lovin' You. If you have a minute, listen to the lyrics by clicking the word music.

Monday, August 24, 2009

Unresolved Issues, Anger & Communication

...so the last we chatted, I was heading up to my shower. I've mentioned before that is where I do my best thinking. And yesterday morning was no different. What had happened in those phone conversations with our relative? (btw, it was not my MIL) I don't have a direct link to her thought process, but my hunch is she has some unresolved issues that are causing her to harbor some anger. My blogpost was not the source of that anger, but it caused those unresolved issues to flare, so it became the final straw before eruption.

And isn't that what happens in marriage? He drops his clothes on the floor for the umpteenth time, she over draws the checking account again, he says he'll be home for dinner at 6:00 and shows up at 6:30, she forgets to fill the ice cube trays, he doesn't fill the gas tank and then the dog runs in with mud on his paws and they both erupt. He screams, she screams, then they say some ugly things they don't really mean. Don't worry, John and I would never do this, we don't even have a dog:)

Many, many years ago when I worked for children's services, I had been assigned to a project that was trying to help parent(s) that had been brought to the attention of the system learn appropriate parenting skills. The goal was to prevent their child(ren) from being taken and placed in foster care. What I learned while facilitating this has been beneficial in everything I do. First and foremost, never act when your adrenaline is pumping. You know the feeling. Count to ten, although I usually need to count to 50. Walk out of the room. Take a breath of fresh air. If you can, sleep on it for twenty four hours. That's what I would recommend to our relative. It works great for marriages, too.

Let me go back now to my mother-in-law. You probably wondered how I could describe our rocky start without a follow up. When we were in the moment, it wasn't the best of times. But what the controversy did, was require that John and I spend a great deal of time communicating. Really delve into our relationship. What we stood for, what was important to us, where we were going. By the time we walked down the isle, we were solid. We had no unresolved issues and therefore no latent anger.

What I love most about this photo from our August 2, 1986 wedding day, is our hands. Look closely at how tight we are holding on. Our knuckles are white we have such a tight grip. And it was a good thing, for our life was heading in a direction we had never discussed and certainly never planned. Today, twenty three years later, I can look back on those painful early days and wonder was it By Chance or By Design we were being challenged and fighting over wedding plans and family issues. I truly believe it better prepared us for what was to come.

Fast forward to the week of August 9, 1989. Something changed. John and I started out on a parallel path with Sarah. I was by myself when I found out about her having Down syndrome. I had my meltdown moment while I was driving by myself. He had his defining moments with her while he was home alone. And this is really how we managed for the first eight months or so. If you have been following our story you have probably pieced together that for the first six months of her life, we thought she was healthy. When in fact she had a significant VSD that went undetected. When it was finally discovered, she was whisked off to surgery immediately. She had many, many complications and stayed in the ICU for almost two months.

About one and half months into the ordeal, the phone rang in the middle of the night. The clock read 3:27 a.m. We knew it was not good news before I answered. They told us they needed to reintubate as Sarah was destating and a culture had confirmed another life-threatening infection. Much of Sarah's time in the hospital has become a blur, but that particular evening is still crystal clear in our minds. For that one phone call changed our marriage, forever.

John and I both silently laid staring up at the ceiling. Tears rolled down our checks onto our pillows. Time seemed to be standing still, yet flashing before our eyes. And then I said, "Honey, can I ask you something?" Still staring at the ceiling I softly said, " Do you ever wish Sarah would die so she doesn't have to suffer anymore?" He grabbed my body and pulled me into a tight embrace and together we cried like we had never cried before. He too had been thinking the same thing for days but did not want to mention it for fear of loosing me, fear of loosing Sarah.

I went on to tell him that on my way home from the Cleveland Clinic one evening, I had stopped at the cemetery to look at the new mausoleum. For some reason, I did not want my baby girl to be buried underground. He divulged that he had done the same thing. Alone. That night we promised each other that we had to start communicating again. We had to go back to being a team, not running on parallel lines, but together as one. We had to share our feelings, good or bad, happy or sad.

Sunday, August 23, 2009

DIVORCE...

I cannot think of another seven letter word in the English language that conjures up more emotion, than the word...d..i..v..o..r..c..e.

Ten years ago, we headed to our favorite local photo studio. Each August, our anniversary present is a photo setting. We take a group shot of the kids, single photos if there is a significant event such as Sarah's 10th birthday and a pose of just the two of us. In 1999, the photographer suggested that we sit on the floor with our backs touching. I jokingly said, "Oh, you mean the divorce pose." I'd seen it used in magazines many times. He looked at me with quizzical eyes, so I elaborated by using my finger to make a jagged line in the air as though I was cutting the photo in two. He laughed.


But in reality, divorce is no laughing matter. Over the years the statistics have hovered around giving a couple a 50/50 chance of making it past the first few years. Add a child with a disability to the mix and that number escalates upwards of 65%. John and I recently celebrated 23 years of marriage. By now, one could assume we have it figured out. And on most days we probably do. Yet every now and then something hits us like a tsunami wave blast. The most recent, just yesterday.

A relative was not happy about a certain blogpost I had written. So she called John at his office and started a mild tantrum. When that didn't work she threw in a few tears, some greater drama, followed by, "call her(Joyce) and tell her to take the post down...if she loves you... she will do it." John's reply, "And if she doesn't, what am I suppose to do, divorce her." John wasn't budging.

So she next called me and followed the same pattern (I didn't know at this time she had already called John). I wasn't wavering at the threats or the tears or the escalating loudness of the voice. I was starting to question her mental stability, even feel sorry for her, but then she hit me with her fourth manipulative tactic, "If you love (John) you will take this post down." I was stunned. Whoa, now she was treading on sacred ground... my marriage.

After I hung up with that call, I dialed John at the office to tell him what had just happened. He told me he had already talked with the same person. This made me angry. He then went on to relay what had been said. When he got to the word divorce, I said, "Exactly, yes, that is exactly what I want. A divorce. I am so sick of this drama. I want out. O-U-T. out.

With that, I hung up the phone. I sat back in the chair and stared out the window for the better part of an hour. I was temporarily paralyzed as I tried to mentally process what had just occured. Then I took the blogpost down along with several others. For a few brief moments, I thought about going upstairs, packing a suitcase, jumping in my car and taking off, just me and Sarah.

And then I did what I always do when times get rough, I went over and stared at the picture of our family. OUR Family of FIVE...

Although we have had many pictures taken since, I keep this one framed on our fireplace mantle. 1999 was the year Sarah turned 10. It was the year we celebrated ONE DECADE of LIFE. It was also the year the medical professionals thought we were losing her...twice. It was the year that she missed nearly 100 days of school, spending many of them in the hospital. It was one of the years that could have destroyed a marriage, yet instead we WORKED to make it stronger. How? With honest, truthful, and tender communication.
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As I stood there looking at the photo of my precious family, I started to question. "How could I have allowed that one call to throw me so off balance that I am willing to throw in the towel?" I pondered for a moment and then went upstairs to take a shower...

Saturday, August 22, 2009

A Visit to Mercy Heart Center

After horseback riding today we went for a little drive on the highway. Then my mom pulled into a parking deck...

...as soon as I got out of the car I realized we were at the Mercy Hospital. "Mom..." I moaned. "Why are we here?" She said, "Don't worry Sarah, we are not here for you." Phew....
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...So we walk in and went straight up to the CCU in the Heart Center. We walked to room 5 and guess who is sitting there?

My big brother, TJ. Haaaa what is he doing here?

Then I see my Grandma sitting up in her chair. She looked really good today. Yesterday morning she got a pacemaker. It is going to help her heart.

So we stayed for a little visit. I told her all about riding Ridge today. It seems a little weird for me to be visiting someone in the hospital. I am usually the one in the goofy gown with the wires coming out of my sleeves. I am happy I can visit with Grandma though. It made her pretty happy.

We took a picture of TJ and Grandpa before we left. Haaa grandpa is pretending TJ is taller than he is. He really isn't because Grandpa is 6'4" and TJ is only 6 feet. But that is still a lot taller than me.

One hug for me before it is time to leave. I needed a nap because it was really hot at horse riding today. Get Well Grandma. I Love You.

Friday, August 21, 2009

Having Fun at Zoombezzi Bay

On the last Friday before school starts, we usually head to a water park. That's what we are doing today. I thought you might like to see the fun we had last year on this day.

Tuesday, August 18, 2009

What message would You like to send to EI (early intervention) Workers


A request from Joyce:

Sarah and I have written before about our dear friend Lisa. She was our neighbor girl who started watching Sarah from the time she was a toddler. Lisa is such a great friend and mentor and truly has had such a significant impact on Sarah being the young woman she is today.
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Lisa is now a Master level medical social worker at Akron Children's Hospital. She has been asked to do a training on Down syndrome for all the Help Me Grow (name of EI program in Ohio) Early Intervention specialists for Summit County. She has asked Sarah and me to help her present, which we are thrilled to do. However, we are obviously a few years progressed from our days of early intervention.
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So, if you were speaking to this group - What would you like them to know? Thank you so much for your help. The talk is on August 26th. I am also going to ask them what they would like parents to know and we will post a follow up.

Monday, August 17, 2009

Where's Waldo? I mean Matthew...

Today my mom was helping me upload more photos to my video called Grandpa's Garden. All of a sudden I just started cracking up and then shaking my head. Do you see why?

Do you need a hint: He's in blue...

Oh that crazy brother of mine...LOL...

Sunday, August 16, 2009

Shhh...A Sneak Peak...

...of what I've been doing today...



I'll tell you more about it after September 1st. That's the official day I can talk about it.
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P.S. We are just about ready to send out the second shipment of care packages for members of the military. We made 100 more cards and treat bags. We are just waiting for more APO/FPO boxes to arrive from the post office. If you are reading about this for the first time and you have a loved one in the military, please click this link and email me the mailing info.

Saturday, August 15, 2009

With a name like Smucker's, it Has to be Good!!!

After horseriding today, we went to see my Grandma & Grandpa in Canton. Our washer in Cleveland is broken and I have a lot of laundry from camp, so when we left we were heading to Columbus. We take route 30 from Canton which is a different way than we usually go.

So I got comfortable in the backseat. I put my headphones on and was listening to my iPod, when all of a sudden my mom slows down and makes a turn. And then another turn and this is what I see...

What the heck? I recognize that sign immediately. It is on the jelly jars. We walk in and the first thing I see is a Doughboy display.

Look at this mom, sprinkles like on my cake at camp.

OH how I LoVe 'Ol Blue Eyes. I have never seen him this big before. I want to take it home.

Holy cow. Look at this wall of jelly!!!

Even with all the different flavors I still went right to my favorite ~ Grape.

There is even a Jif display. I guess if you have jelly you have to have peanut butter.

Well, I bought a few things (it's a secret) but I got this cute little Doughboy stuffed animal for free. He even giggles if you push his stomach.

This store is really cute. It is in Orrville, Ohio. The home of Smuckers. My Grandma used to live here so she graduated from Orrville High School.

Look how cute these flags are on the light poles. It's like being in a grocery store. The sign at the end of the drive says, Thank you for Visiting. I'm glad we did. That was fun. If you are ever in Ohio, you should check it out.

Say Cheese....


Ten Years Ago Today...

...I was posing for my birthday portraits...





Friday, August 14, 2009

2009 Camp Report

I was all packed up and waiting for my mom in the great hall. I was so happy to see her I was waving and pumping my fists in the air.

I had a good time at camp. We did lots of fun things. Here is my Top Ten Favorite Things About Camp:

10. Pool Party
9. Paper bag Puppets
8. Bubbles
7. Movie Night
6. Badminton
5. Riding Jill, the fiesty horse
4. Water Balloons
3. Dinner
2. The Dance
1. The Campfire with S'mores

My mom wants me to show you this newsletter she gets when she picks me up. She says it helps her to know what I did. I do not know what she needs a piece of paper for, I talked for 45 minutes, the whole way home. I love telling everyone what I did at camp.

She really like this report too. They do one each day of the week. On my report today it said I was homesick. That's because I knew in the morning it was time to go home.


After I told my mom all about my week, and we stopped to see my dad at the office, I was wiped out. I did not quite make it home before I was out...


...snoring!!! My mom just opened all the windows and left me there until I woke up.

Late Breaking News

Guess Who's Almost Home???

I am on my way home from camp, but first I had to stop at my Dad's office to see him. I had such a good time, I will tell you all about it later.

Thursday, August 13, 2009

Oh YES you Will

Twenty Years Ago Today...
...For as long as I can remember, the shower is where I do some of my best thinking. I'm not sure if it is the warm water, the time alone or that I just allow myself to get into the brain storming mode but this day was no exception. I started to mentally review the last couple of days. No doubt about it, they were tough. I guess shock will do that to you. But why was it so emotional? Why was I angry? Why did it hurt so much? I quickly concluded it was because I felt so out-of-control. Sarah's arrival had deviated from the plan I had in place.

So I decided that I needed to do what I do best - create another plan. I got out of the shower, put on makeup, and got dressed. I went to the phone and called First Call for Help (now 211). I knew many of the staffers who answered the calls that came into this information and referral line run by the United Way. Afterall, I worked with them.

When the call was answered I decided it was a little too soon to offer my identity, so I just asked where I should go to get help for a child born with Down syndrome. While they were looking up the information, a light bulb went off in my head remembering the building dedication I had attended for the Lake County Society for Rehabilitation. So I called them. They immediately put me in touch with a social worker to schedule an intake. With that one short call. I felt so much better. Content even.

And with that feeling came a new sense of determination. I had never been a person to see the glass half empty. I was always willing to challenge. To at least question. To not be satisfied with the status quo.

As I kissed my precious baby girl, I promissed her that yes you will go to school alongside your brother, you will play on the playground whenever you wish. Yes, you will be a Girl Scout. Yes, you will go to Prom. Yes, you will graduate from High school.
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In some respects, I could say that Sarah was truly born on August 13. For this is the day, I started to see the possibilites instead of the limitations.


Wednesday, August 12, 2009

Rewind...We've hit a small bump in the Road

Twenty Years ago Today...

...we were waiting the arrival of John's parents. They had gone out west so Grandpa could speak at a meeting for the American Cancer Society, his former employer. I do not remember the specific state they visited, but I do remember being a bit surprised and somewhat saddened that they had chosen to travel the week of our due date. It seemed more common that grandparents traveled in for the arrival of grandchildren, and they were doing the opposite.

Out of the gate, my relationship with my mother-in-law was rocky. I did not meet her litmus test for various reasons, high on the list was the fact that I had been briefly married before. She once took me to lunch and expressed her displeasure that I was making her son withhold information from her. She told me her children told her everything until I entered the picture. I was ruining her perfect world. With that, some women might have gone the other way. I didn't. I'm not sure why, but I hung around.  The planning surrounding our wedding was painful at best. She did not want her friends to come to see her son marry me.

Still, I was bound and determined that I was going to turn our relationship around. I was going to prove that I was worthy of her son's love. TJ's arrival a short seventeen months after our wedding day helped. The focus moved from me to him, with a positive spin. Through an unusual twist of fate, we moved to the same community they had lived in throughout most of John's childhood. I tried my hardest to put my best foot forward. But now this. In plain truth, I was nervous about them coming. I was not sure how they would react to Sarah having Down syndrome.

First, my mother-in-law held Sarah. She studied her features and commented how petite she was. That she had TJ's nose. That she was being so good.

Next, the Grandpa took his turn. It was just like you would expect when grandparents meet the next generation for the first time. He repeated much of what had already been said. Then he said he loved her outfit and her headband. Ugh, the headband reminded me of what we needed to tell them. John started the conversation with what we knew at that point. He described the soft markers that Sarah clearly exhibited. Grandpa interupted with, "No, I will not believe it. They can be wrong you know." John again went over the soft markers and said although they will do a study of the chromosomes, it is very unlikely the test will show otherwise. I thought John was handling the situation well.
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I had just started to think about getting up to pour some drinks when I heard, "There are places you can send her. The nuns up at Rosemary will care for her." What??? I was searching for a rewind button. I think my head spun three circles around. Did he just suggest we give Sarah away? Put her in an orphanage? In the past three days, my pain had been intense, but nothing could have prepared me for this. I did not know what to think. The grief that I had just started to put to rest that afternoon, was resurfacing.
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Then my husband spoke. His voice was firm yet with compassion, "Dad, we won't do any such thing. Sarah is our daughter. We will love her no matter what and we will raise her in this house." My anger quickly subsided, and I started to feel a calm deep within my heart. I was so proud of my husband. At that moment in time, I knew. I knew it was NOT By Chance but rather By Design, that Grandpa had been invited to speak at the conference. The grand plan was for them to be out of town. John first had to fall in love with his daughter. Then and only then, would he be ready to stand up for her. To advocate on her behalf. To confront his own father in his misguided thinking and help him understand on that early evening...
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Pictures do Paint a Thousand Words


Twenty Years Ago Today...

...Now that Sarah was all dolled up, I placed her on the floor in the living room. Her big brother was about to come home...


I positioned Sarah so I could be perched on the steps to take photos without TJ seeing me. I wanted to get his first reaction to seeing her in his domain for the first time. There is really nothing more that I can add. The pictures truly tell the story. A story that has not changed in twenty years...