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 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 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.