Through the years I watched his life move forward on my computer screen. He appeared to be happy, intelligent, and fascinating – just the way I remembered him that very first day. It started with occasional likes, random comments, infrequent messages. But eventually it grew into almost daily chats. We talked often but light heartedly. Chats about music, or science or our jobs. I looked forward to reading his words. His presence in my life was invaluable. He didn’t know it but the moments that he took to talk to me on that computer screen were pulling me through some dark days.
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He was my person. I adored him. He had no idea. No matter how much we chatted we almost never moved passed music, science and our jobs. He was my person. I adored him – and he thought I was just really interested in Quantum Physics. Then one day he phoned me. Within moments I realized for the first time that I was his person too and in that moment both of our lives were going through some huge changes. Somehow we very quickly decided that we wanted to go through these changes together. So we did.
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After years of black words across a white computer screen, I woke up to find a note on the dining room table that we shared. It said ‘I love you, Erin’. My world paused in that moment. That tiny note was the very first time I saw his handwriting in the 18 years I had known him. It was a piece of art just for me. Seeing his words on paper finally allowed me to know him so much deeper than I ever could have over a computer screen. I loved him.
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I carried that note with me though our first years together. I carried it in my wallet and would glance at it and run my fingers over the letters when I needed it. In time we decided to get married in the same way that we built our friendship together – privately. As we stood at the waterfront I heard him say ‘I do’, I held that note in my pocket with me. He was my person and now I could live the rest of my life with him as my husband.
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That note began wearing down over time. That little piece of him that brought me so much joy would not last forever and I knew that I needed it to. I chose to have it tattooed onto my wrist so it would be with me always. When I first saw it there, permanently marking my skin, my world paused. It was perfect. It is like his fingerprint or his heartbeat. The way in which he prints tells his story. His interesting letter ‘e’. The angle that he holds his pen. It was all part of his story.
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Written words are a beautiful, intimate and undervalued extension of who we are as individuals. In a world of social media and computerized connections, we are forgetting to allow those who we adore to get close to who we really are. Our writing can be fast, messy and deliberate. Our writing is usually done for a purpose and done without a lot of thought. Our writing tells a story that for the right person can make their world pause and their heart race. Our writing is a work of art. Unique. Personal. Vulnerable. Personal. Exposed.
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“The last thing we expected to learn during our 16-week anatomy scan was that our unborn baby boy, Michael, had a noticeable defect of his heart. This ‘defect’ would be identified at a following Cardiology appointment as Hypoplastic Left Heart Syndrome, HLHS for short. Little did we know, this was the first stop on a trip of the unknown. The start of Michael’s heart journey began with multiple specialty appointments and fetal echocardiograms. The many ‘echos’ were done to ensure no surprises would pop up before Michael was born. We were given three options from the start. These are the only available options for HLHS at this time.
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The first being termination of pregnancy, second was palliative care, and the third was a 3-step palliative surgery option, as there is no cure for HLHS. It wasn’t hard to decide which option we would choose. We didn’t believe in abortion, and who am I to take away Michael’s right to fight? So, we chose the surgeries. He would need three at the least. Norwood, Glenn, and a Fontan. With Michael having only a 50% chance of making it past the first surgery, we were ensured the next two procedures are far less complicated and have a higher success rate. Scary, right?
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