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.

Tuesday, January 15, 2019

A Buckeye Legacy

By Joyce Hillick Ely:

It was late fall of 1977 when a neighbor asked if I would be willing to consider a position as a teen clinic coordinator for a local non profit organization in Canton, Ohio. I was just seventeen years old and the possibility of learning something new was exciting. So I agreed.

My supervisor in this position was a social worker named Betty Pedrotty. I adored her. She was warm, encouraging and despite my young age and lack of experience, she believed in me. As a senior in high school that was a great motivator and had me changing the direction of my future. Soon I was a registered student in the College of Health and Human Services at Bowling Green State University with Social Work as my declared major. Just like it had been for Betty.

Upon graduation, I knew I needed to go to graduate school.  Although I adored Betty, the person I ultimately wished to be was Louise Saffron, the Executive Director of this organization. As a teen, I watched her lead and direct in the most positive manner to bring about change. I also quickly observed that funding was critical to the success of any human service entity.

In 1981, the library was our best resource. I spent hours pouring over catalogs and school directories looking for the best places to apply. The adventurous side of me wanted to take off for parts unknown, yet the program that I kept coming back to was in my home state at The Ohio State University. It was there that I would be able to earn a Masters in Social Work with a concentration in Policy and Planning and at the same time earn a second graduate degree in Public Administration.

I had only ever been to OSU once before. While in high school a chemistry teacher had selected me to attend a one day event held in Mershon Auditorium. Today it would likely be described as a STEM event, but that was not a term used back then. It was enough though for me to recognize that Columbus was a place I could call home.

I found a quaint efficiency suite in a home on East 18th Street. It was easily accessible to Stillman Hall and also had a dedicated parking place for my car. In addition to my studies, I often worked from midnight to 8:00 a.m. at the battered women's shelter.  It was a unique position because most of the time the residents were sleeping, so my tasks were minimal. I did need to stay alert though in case a call came in from an abused woman looking for shelter.

So I often took a quilting project with me. It was a skill I learned as a teenager after discovering a new quilt shop shortly after learning to drive. It was a portable activity and it brought me comfort and joy. I found it was also a useful conversation starter when a new admission came in during my shift. It was often times difficult to begin a conversation with someone who was scared, scarred and frightened.  Soon I was asked to come in during the day to teach the residents how to quilt. I thoroughly enjoyed sharing my talents and learned I also really liked teaching others the use of needle and thread.

Shortly upon my arrival at Ohio State, I was asked to meet with my faculty adviser, Dr. Gwendolyn Gilbert.  As much as Betty and Louise shaped my future, so did Gwendolyn. It was she who suggested I consider a field placement at the Ohio United Way, although it was then called The Ohio Citizen's Council. She thought it would combine all my interests and would easily dovetail with my studies in Public Administration.

She was right. My immediate supervisor, Judith Bird, had a tremendous grasp of the workings in the State House and all the bills that were being considered having some effect on Health and Human Service in Ohio. I also was able to work very closely with Shirley Rhodes who's task was to follow all the workings of Title XX, which at that time was the Federal body of funding that flowed thru the State then to many organizations. It is hard for us to fathom this today but the only way of communicating in the early 80's was through phone and mail services. She wrote a newsletter named the Title XX Exchange that was mailed weekly to all the United Ways in the State. Soon I was writing the newsletter.

The Ohio Citizen's Council hosted an annual event for all the United Way CEO's in the State. I was able to help organize and participate in this event. It was there I met a gentleman named Mark Balson, also a graduate of the OSU College of Social Work. He had worked for the United Way in Franklin County for a number of years, yet had just been named the Executive Director of the United Way of Delaware County. He was looking for his first intern.

Ohio State at that time was on a quarter system and classes did not begin until mid September, yet I recognized in order to see an entire fundraising campaign play out I needed to be involved much earlier.  So I started the drive north early summer. By the official kick off in the fall, I was hooked. The energy and excitement surrounding a campaign was like nothing I had ever experienced. I also recognized that fundraising in the workplace was much easier than going door to door to solicit funds as I had done the previous year with the Rape Crisis Center in Columbus. Or hosting a Mother's Day offering at local churches.

At the conclusion of the campaign, the really important task began with committees of many volunteers who worked long hours to determine the best use of that year's campaign funds. I was asked to visit each agency and chat with them about their program mission, their financial strength and their long range goals. I was surprised at the time that many could not answer that last question. Yet recognized that being smaller in scale than their counterparts in the larger county to the south, they did not have the number of staff nor perhaps the expertise required to carry out such a task. So I set out to develop a model for strategic planning for smaller organizations. It would become my Thesis.

At the conclusion of my time with Mark, he suggested that I apply for an Internship with United Way of America. It was highly selective with several hundred applicants for just ten positions each year. My faculty adviser suggested I also apply for the Presidential Management Internship. I knew that both programs would take me to Washington D.C. if selected. To my surprise, I was chosen for both.

It was perhaps one of the most difficult decisions of my lifetime. One would take me down a path of non-profit and the other the path of public service with the government. What ultimately helped me choose was the difficulty I had experienced making change in a state system. I had worked very closely with the Ohio Department of Health on a project to alter the way they administered funding to children with handicapping conditions. I had sought out and spoken with families who were grossly frustrated with the red tape involved. I felt their frustrations personally, yet could not really understand why.

A very short time after graduation, my parents drove me to Alexandria, Virgina. I'm sure I didn't recognize it at the time but I was a small town girl in a big city now. Everything was different. Life had a way of speeding along in Washington. Yet I enjoyed it immensely. During this internship you are twice sent out into a local United Way to work for a few months. I was matched up with Cleveland, Ohio. I could have gone anywhere in the United States, yet I asked for this city just an hour north of where I grew up because they were well known for having the largest number of $10,000 donors in the country. I wanted to see just how they did that, with the thought that I could somehow duplicate it in another city.

What I learned was there was something very unique and special about philanthropy in Cleveland. I learned from Bill Kerrigan the President of United Way Services at 3100 Euclid Avenue that personalization was key. I also met a Loaned Executive by the name of John Ely, Jr.

John was an Ohio State grad and an avid Buckeye fan. That fall he invited me to a rally in Cleveland hosted by the alumni club before the Michigan game. To his surprise, I had no understanding of the significance of this rivalry. He was even more shocked to know that I had never sat through a football game while on campus. Despite my scarlet and gray shortcomings, we remained friends.

As fate would have it, at the conclusion of my internship and John's graduate studies in Public Administration at Cleveland State, we were both hired by United Way in Cleveland. Our friendship blossomed and in the spring of 1986 he asked me to marry him. I said yes, with one caveat, I was not planning on staying in Cleveland for long. I had a career mapped out that would take me to other cities. He agreed.

In January 1988 our first son was born, followed by Sarah on August 9, 1989. Our pregnancy had been perfect, yet the morning following her arrival, a doctor who I had never met before suggested she had markers for Down syndrome. I was alone when this news was delivered and truthfully did not know much about the chromosomal abnormality, but I sure gathered from the tone of disclosure it was not favorable. That evening I had to share the news with John. We were momentarily devastated.

After several hours of additional testing the next day they determined we could take her home as they found no medical conditions warranting a longer stay. I returned to work in my role as the Regional Director for United Way. Sarah and her brother went to daycare near our home while John worked as the campaign director for the American Cancer Society. At about four months of age we started to notice Sarah was more lethargic than we thought she should be. After many trips and disappointments at various doctors appointments, a pediatrician at an urgent care discovered a heart murmur, so significant he wanted her at the Cleveland Clinic immediately. It was then determined that Sarah was missing the wall between her ventricles. The diagnosis was a ventricular septal defect.

We were advised that surgery was risky, yet without it she would have a month or two perhaps three, before her body would collapse from the over exertion on the heart and the improper blood flow would not allow the necessary levels of oxygen to get to her brain. Surprisingly, the surgery went well. The recovery did not. There were setbacks, infections and frustrations. The few days we thought she'd be in intensive care turned into weeks.

Then the day before Valentine's we were asked to meet in the family waiting room. It was disclosed that Sarah's body was not responding to medications like it should and her lungs were growing weaker and weaker. They were preparing us for the worst. A social worker asked if she could get us anything. She suggested coffee. Instead I asked for white fabric and a receiving blanket. I had already made Sarah her first Valentine's dress, yet it was now apparent she would not be able to wear it with all the tubes and wires still connected to her tiny six pound body. So using a pair of surgical scissors, I cut the dress apart and hand appliqued hearts to the fabric that had been found.  I used the hospital receiving blanket as batting and the fullness of the dress to create a backing.

Shortly after midnight on February 14, 1990 I placed the tiny make shift quilt upon her. Almost instantly monitors and alarms were beeping. A nurse came running over to her bedside wondering what I had done. Terrified that something awful had just occurred, I pointed to the teeny tiny quilt where I had embroidered her name in red thread that the social worker had found for me. As it turned out, the quilt had let Sarah feel our love and she was responding in a way that was positive. It was a turning point for all involved. She showed us not to give up on her.

It would still be several months before we were together at home. We did have a few trial runs but they ended in needing a return to the hospital. When Sarah finally did come home she had a permanent tracheotomy and was dependent on oxygen. For the first time I now felt that frustration I had once written about in seeking funding from the Bureau for Children with Medical Handicaps (BCMH). Thankfully just a month earlier John had left his job as the Development Director for the American Heart Association where he had started just a few weeks before Sarah was born because the demands of his boss were too difficult with Sarah in the hospital. Therefore he was now home to care for our medically fragile daughter when we were informed we did not qualify for nursing assistance.

I do not believe I had completely internalized this at that time, but the career plan that had been mapped out for me was coming to a screeching halt.

~ * ~

For the next seventeen years Sarah was in and out of the hospital so many times we lost count. Her lungs and airway were her enemy. Yet despite her chronic health conditions, I was able to further my career with United Way in Cleveland, ultimately being name Vice President of Community Resources which at the time oversaw all the regional offices in the area, the Information and Referral System which eventually became known as 211 and the Management Assistance Program providing consultation to start up non profits in the area. I was often charged with pulling out the documents I had written in grad school helping small 501(c)3 organizations conduct a strategic plan. 

While I was out working, John continued to care for Sarah at home. He drove her to numerous therapy appointments every week. He also decided he needed to find something he could do from home to provide additional income to help pay for the extra help she needed. After a bit of research, he decided medical billing might be a good fit. It was 1991 and electronic filing was just becoming popular. In May of that year, American Medical Computing was incorporated. In 1993, I left United Way to join John in growing the business, yet remained active in the non profit environment, working for a few years as the development director for The Cleveland Institute of Music. I left the position with the arrival of our third child.  

Soon after I returned to United Way as a consultant to help member agencies create outcome based measurements, a new requirement for funding. During that assignment on a very cold frigid day while standing in a parking lot, I learned that the American Heart Association was looking for an Executive Director. Remembering that had ultimately been a dream of mine, I sent in my resume. Of course the personal connection I had with my own daughter having had open heart surgery made me a strong candidate.

I'll never forget the day I started in that position. My office was once the master suite of a beautiful mansion in University Circle, in fact I had worked closely with the family who once owned it while at the CIM. I sat in the large leather chair left behind by my predecessor with tears rolling down my cheeks. Never did I think this would come to be.  My time there was short as the national office had changed things dramatically. Travel to and from Dallas was becoming too frequent for my personal life, yet I made it. I will always be able to look back knowing I achieved what I set out to do.  

I spent the next few years working full time with John and the medical billing company. We had moved the operations out of our home in 1997. It was quickly growing as the need for electronic filing was become more of a necessity for small medical offices. 

It was during this time that Bill Meezan, the Dean of the Ohio State University College of Social Work came to Cleveland to visit with me. He had a vision that I fully supported. In Autumn 2006 I became a member of the newly formed Dean's Development Circle. I quickly learned that although OSU had a reputation for excellence in fundraising, each College was charged with their own development goals and the College of Social Work was lagging behind.

This newly acquired knowledge lead my husband and me to start thinking how we might be able to help. We were also keenly aware that Sarah was living on borrowed time. Soon the framework for the Sarah Ellen Ely Endowed Scholarship was forming. Our vision was to help students who wanted to pursue a Masters in Social Work with a concentration in either developmental disabilities or pediatric medical social work. It was also important for me to know a little bit of Sarah would be walking the campus that her father and I walked as students many years before.

We publicly unrolled our vision for the scholarhip on September 9, 2007 at the College of Social Work's annual tailgate party. Afterwards, we hosted a more intimate party celebrating Sarah's 18th birthday. The Dean brought Sarah a large box containing a social work sweatshirt and an OSU bear. She cherished both.


During my early involvement with this committee, I returned to United Way for the third time as the Director of Strategic Planning, IT and Government Relations. Likely the strangest combination of duties, yet a perfect job description for me. Only moments after arriving in my new office on the fifth floor of 1331 Euclid Avenue, flowers arrived from my friends at the College of Social Work, almost twenty five years from the day I graduated. For the second time in my career I sat in my chair with tears of gratitude rolling down my cheeks. 

In September of that year, Sarah and I attended our first football game together. She was having the time of her life. For a short few hours neither of us had a care in the world. Life seemed grander that day than it ever had. And of course, I would now be able to admit that I had finally sat through a football game.

As it turned out, our excitement would be short lived. Sarah now nineteen, was in a job training program at the Cleveland Food Bank. She was loving her tasks and responsibilities, yet unfortunately I was often getting called because she was having trouble breathing. By November it was apparent her body was failing. We had to withdraw her from her duties and she soon was spending more nights at the hospital than at home. Always with her was the bear that Dean Meezan had brought her for her birthday.

By December the doctors were telling us to get our affairs in order. Secretly, I thought perhaps her scholarship, not yet fully funded, would turn into a memorial for our friends and family to contribute to. In January with her health further deteriorating, I submitted my letter of resignation solely for the purpose of spending as much time with Sarah as we had left. 

For months, I focused all of my energy to helping her get better. Winter turned to spring, then summer, until it was game time once again. Sarah begged to attend another football game. So we packed up and made the drive from Cleveland to Columbus. This time she was so weak and fragile we needed a wheelchair to safely get her to the stadium. Once there we locked it to a stairwell railing and walked into the Shoe.

She was thrilled the Buckeyes were playing Navy that day. What neither of us knew is they had arranged to do a flyover with large military jets. I'll never know if it was the intense sound of those planes which did bother her terribly,

the hot sun shining on us, or simply too much activity, but she collapsed in our bleacher seats. I remember saying a quick prayer asking for strength to handle what was happening and then scooped her into my arms making our way to the aisle. I was quickly met by a few ushers who started to call for medical assistance. I asked them to hold up and help me get her to her wheelchair. I was carrying with me her emergency medication to help open her airway in my bag.

As I was doing what I had learned so many years ago in helping with these episodes, I half jokingly, half truthful, said to the people standing around with me, how many people dreamed of taking their last breath in this stadium. I will never ever forget what happened next. This usher who unknowingly before the game had joined our photo, put his arm around my shoulder and said, "Mom don't even think like that. You and your daughter have a lot of purpose left."


Sarah continued to improve. She even returned to her job training program working internally in a small snack shop onsite. She was thriving in this small retail operation, yet we had been given our warning that she would likely never be employable in a regular place of employment with her health condition.

I was now unemployed and Sarah was gone for a few hours each afternoon. I was floundering. I just wasn't sure what I should do next. Then out of the blue the Wednesday before Thanksgiving 2009, our landlord at our medical billing office asked to see me. She had a boutique wedding shop on the first floor of the building and asked if we wanted the space as she was ready to retire.

Without any type of a plan in hand, with no idea where I was to come up with the money, and certainly with little experience in retail, I said, "Yes! I think I will open a quilt shop."

Not too long after, one evening at dinner time, I could not find Sarah. She had escaped into my sewing room in the basement and was playing with fabric squares I had spread on the cutting counter. This would be the first time ever that she had shown any interest in my love of sewing. Soon I had her stitching a pillowcase for a friend also born with Down syndrome waiting for a bone marrow transplant. She had such enthusiasm for the project I soon recognized that it was not I that would be opening a quilt shop, rather it would be WE!

From that moment the focus changed considerably. No longer was this simply going to be a shop selling quilt fabric, it was going to be a place of employment for Sarah and perhaps some of her friends. We opened the doors of JEllen's house of fabric on Sarah's 21st birthday. It was a day of celebration for so many reasons, yet the most significant was Sarah was alive!! And how grand to be my business partner.

Within a very short amount of time our shop was being recognized by Better Homes and Gardens as a Top Ten Quilt Shop. They titled the article featuring our shop, "On a Mission," and that we are. At first we hoped to stitch 50 pillowcases to donate to sick kiddos at the Cleveland Clinic Children's Hospital where Sarah had spent so much of her earlier life. Then it grew to 100, then 250, then 1,000. Just this past November Sarah delivered her 10,000th pillowcase to the Ronald McDonald House in Akron. With each pillowcase donated she includes a card about the very first case that she stitched for her friend Kristen Kirton who unfortunately passed away from cancer.

Today we are in a new location closer to a home we built for my father to live with us. Now named Liberty Green Quilt Shop, Sarah continues to inspire families with young children also born with Down syndrome. She is happy and thriving! For which we are so grateful.


Yet perhaps the greatest gift of all was watching Sarah with the very first recipient of the scholarship bearing her name. Olivia Pfister first met us for lunch at The Blackwell along with Dean Tom Gregoire and Amy from the Development office in the summer of 2017. She had just begun her Social Work field placement in the Emergency room of Nationwide Children's Hospital. I often wondered how that first meeting would go. It was splendid. Sarah was so excited to meet Olivia.

After eating, Amy presented Sarah with the official document signed by The Ohio State Board of Trustees. Sarah insisted we go over to the front doors of the Stadium to take her photo. It was at that moment I recognized this scholarship was as important to Sarah as a diploma is to others. She was so proud, which melted my heart.

Later in the school year Sarah and I were able to attend the scholarship dinner where Olivia was recognized. There really are no words adequate to describe the feeling of knowing you've helped someone else be able to help others like we've been helped and nurtured over the years. The circle of life is so very grand.

And of course having Sarah with me to publicly congratulate this first recipient brings tears of joy beyond description. We just could never allow ourselves to fully have that part of this dream.


With the new school year upon us it's time for the second recipient to be identified. Megan Vance is a first year graduate student. She has been extremely involved in Students Supporting People with Down Syndrome, a student organization on The Ohio State Campus. As we were corresponding we learned that Megan has a brother with Down syndrome. I can't tell you how overjoyed we were to learn of this connection. Never in our preliminary discussions about Sarah's scholarship did we think there would be someone so closely aligned. This December while on break, Megan came to the quilt shop so we could all meet in person. Sarah was thrilled to share the newest collection of fabric to arrive. 

As a donor, it's so heartwarming to see a little bit of Sarah spreading across campus. As a mom, I'm overjoyed.