Boston Children's Hospital, Family, HLHS, Sobriety

Keeping it in the day.

In 2012, I became acquainted with the Schultz family through Mike’s blog ‘Echo of Hope’. The description of hospital life with a great sense of humor added in lifted my spirits during our hospitalizations. You can imagine how excited I was to see the Schultz name on my trip to the patient family kitchen. I introduced myself to a weirded out Mike, and mentioned how much I appreciated his writing. His posts gave a sense of validation to the crazy unpredictable life we were having. I wanted to thank him personally for lifting up my spirits. I also met Ari on that day.

For the past 4 years, I have been following their journey, praying for their journey to get easier like ours did. Isabelle had her last open heart surgery in the Fontan sequence and was doing very well. When we got home after 7 days inpatient, she instantly wanted to ride her bike. Congenital Heart Disease was not going to keep her down and she has been that way since. Her Dad and I are grateful that she has been able to grow and thrive in ways we could not have imagined.

We wish everyone could have this outcome like we have. But that isn’t reality unfortunately. Not everyone has the experiences we have had with her being so active, and staying out of the hospital with the exception of a dehydration episode. Every day, I thank God for blessing her with good function for that day. I am aware that things can change without warning.

When you have a child with a condition like Isabelle or Ari, you find yourself between having hope for the future, and keeping expectations in the day. When I start thinking about Izzie’s future, there is a voice that reminds me that moment may not come and to enjoy what is happening right now. I want to believe that she will grow up and follow her sisters’ paths through school and other life events. But that voice is still there, and whispers in my ear to hold on to what is happening now, for that future may not come to fruition.

I hate being dramatic like this, but in the wake of Ari’s unexpected passing I can’t help but feel an indescribable sorrow for Mike and Erica and all of their hopes for Ari. They had just started to let themselves think about the future, and the unexpected happens. Their son was given a second chance with a new heart, and that still wasn’t enough to save him. I hope people understand my frustration or response when I am asked “So if Izzie gets a transplant, she’ll be ok, right?”

No. She may not be okay. We will always have to be on our toes regardless of how pink her lips are at the moment. We will always have to stay vigilant, check her saturation levels and worry about how hydrated she is. We will always be cautious when talking about the future. I am even reluctant to talk about her 5th birthday, which is a huge milestone for HLHS kids because it means her survival rate improves dramatically. We aren’t there yet.

There is no finish line to this race, and we are forced to remember that every time we see another family struck by the merciless heart of CHDs. All we have is right now, and that needs to be enough.

Please remember the Schultz family as they walk through this immensely difficult time. I cannot imagine how awful this is for them and for their children.

Family, Work (or lack thereof)

The Freedom Detours Can Bring.

When I graduated from Castleton State College (now Castleton University) in the spring of 1994, the path towards a career was wide open. I could see all of the possibilities and began sending out my resume with enthusiasm. That summer I was hired by the local newspaper to assist in the Graphics Department, something I had never contemplated doing before. My career path solidified as I fell in love with typography, aesthetics, and Photoshop. From that day on I knew exactly what I wanted to do with my life.

As I moved forward, obstacles began to appear making the journey more difficult. I jumped over hurdles such as not having an Art degree, having little experience outside of Financial services, and having a family. Each opportunity became more of a challenge to prove my worth as a designer. I was plagued by Imposter Syndrome and when I did land a job, my fears of rejection began to strangle me. One of my favorite jobs became a nightmare of insecurity and doubt, and in the end I lost that too.

I’m sure you have heard of the saying “When one door closes, another one opens”? Well, in my case, it was one door closes and the next one opens to a “DEAD END” sign. As my age increased, my opportunities decreased. My last full time role ended with both parties deciding that it would be best if I found something else somewhere else. 22 months of desperately trying to prove myself had taken a toll. I felt depleted, and empty.

Contracting was always an option, but those roles were for a PowerPoint ‘designer’ in Financial Services. One role landed me at a Construction firm in Seaport District assisting with a massive proposal. The work was fun, I loved the people and secretly hoped that they would find a place for me. They didn’t. Instead, I went back to a financial firm for a week doing a presentation about Women & Finance that was insulting to women. When I left that contract, I knew that I was long overdue leaving Finance.

Last winter,  I was granted a contract at a Health care company covering for a maternity leave. Initially it was going to be a Project Management position, but instead turned into a design role as my talents were being discovered. I loved it. It was work I had always wanted to do. I was thrilled to be able to provide services for a sector I had always wanted to be in. After a few days, my passion to do a good job was misinterpreted as ‘being too intense’. I was confused by the office politics, but quieted down internally so I wouldn’t jeopardize the opportunity.

The feedback was always positive, and with each project I became more comfortable. When I wasn’t in the office, I would think of ways to make the production system more efficient and tried to find ways that I could extend the contract. I left feeling accomplished and appreciated. Realizing that I still needed income coming in, I applied at one of my favorite places to shop and was hired part-time. I thought of other possibilities to do freelance work.

At this time, I still do projects on the side for them, but soon that will change as well.

About 6 weeks ago, I saw a posting on LinkedIn for a Graphic Designer for this company. Instantly, I applied and excitedly mentioned the people I had worked with as references. I contacted both my former manager and a colleague, and told them I had applied. When the initial excitement wore off, I began to think about what I was told by my colleagues on my last day.

“It’s too bad we don’t have a full time role available, we don’t have the budget for an in-house designer.” 

Wait a second. Why didn’t anyone give me the heads up that this was even an option? It’s not like I hadn’t talked to anyone recently. I was just in the office not long ago talking with a manager about a few projects! 

Later in the afternoon I received a message from my former manager encouraging me to apply. When I spoke with them on the phone, I was told that they wanted to look at a few other resumes in addition to mine, of course. I was also told that I would definitely be hearing from them. My heart sank. I knew what this meant. The person I had worked with was trying to be nice, and I did appreciate the gesture. However I would have preferred more of an honest response because professionally, I deserved one. The fact is, they weren’t entirely crazy about hiring me. I didn’t fit in as well as I had hoped.

I was scheduled to work the next day. My heart was heavy as I walked in through the parking lot towards the entrance. I punched in, put my apron on, and walked slowly to the front. I saw my colleagues laughing and smiling. They were happy to see me and I was greeted by the supervisor letting me know where I was needed. I did my job, and for the first time in my working life, my heavy heart did not affect how I performed my job. I smiled, I greeted people and happily completed the tasks before me.

I love where I work right now. I love that Whole Foods allows me to be me. I can be ‘intense’ with enthusiasm for customers. I can be a partner of a transwoman who is welcome in the store and can be herself there. I am allowed to have life events that prevent me from being there on time (as long as it happens sporadically of course). People are happy to see me. They help me when I need it, and in turn I help them. Customers for the most part, are nice to me and engage in conversations about their weekends, meals, whatever.

The pay is not anywhere close to what I was getting before, but that doesn’t matter to me right now because I am happy. I do see people from the financial firms I had worked at before and sometimes I get the “OMG I feel so bad for you that you ended up here” look. I no longer have a corporate job so that means I must be doing badly.  I smile and usually say something like “When I go home, I don’t worry about other people’s groceries so it’s awesome!” And it is. It is awesome to go to work, do my job, and then leave. I don’t carry stress from the office home with me. I can be with my family and be 100% present.

There is no compensation for that feeling. I have gone from the bondage of stress from the office to freedom from it. So what if I wear an apron and have a name tag? I know I am right where I am supposed to be. This path feels good upon my feet and for that, I am grateful.