Posts by Stephanie Hodgson

Upon returning from a three-week journey west with my twin sister, we both were on a spiritual high. We attended a retreat in central Oregon where we slept in tipis and sat around a fire each night—the most camping I had ever done since junior high school. We had gifted ourselves this journey because we were going to be celebrating our 50th birthday on the last day of the retreat. It was the most spiritual connection I have had in such a long time.

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Have you ever carried the burden that we are the forgotten Xs who will be Xd off and signed away? Some questions going through my mind lately are: What would you do if you found yourself in a precarious situation where you became either homeless or needing assistance with day-to-day living? Have you thought of your long-term care needs? Will you go to an independent living setting or decide to be in a nursing facility?

A person I recently met made me begin to think of the concept: "What's the patient's name?"

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I have only been in love once. And, I know the person I fell in love with loved me as much and as deep.

Our love felt a lot like the love depicted between the two characters in the 1970 movie, “Love Story.”

The heart is so treacherous, it can make one believe that a devoted love and endearment like this for one another is obsolete, almost unattainable, and hard to keep alive. The mind can begin to question why this love should survive, anyway. The mind can begin reasoning irrational and delusional things that make one go crazy and feel hopelessly sad.

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"Don't try to chase normal. Just try for progress." ~A poolside friend and former cancer patient

During our lifetime, we will meet many guides and teachers who will influence our decisions, for good and for bad.

Most of those who have had a hand in our life's direction won't always stay in our lives as we'd wish them to or as they'd wish us to. We move on in our journeys or they move on in their journeys.

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Stories are told by my mom and older siblings that happened in the distant past—stories my twin sister and I were too young to remember, but are not lost. They are etched in memory, and are still fresh and vivid as yesterday.

One story is imprinted on my mind, like my infamous abnormal EKG, which will never read normal, unless I receive a combined heart and lung transplant.

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Compliance or non-compliance: that is the big C word. And compliance is a topic that needs to be addressed here, in all seriousness.

I never thought of myself as someone who doesn’t follow doctors’ orders. But at my last appointment I got the wakeup call of my life.

Over the past few months, thinking that I’d try to go natural and holistic, I tried going off some of my medicines. One of the reasons I did this is that one of the main medicines I take causes really bad heart burn or acid reflux. I had begun to feel too toxic with all of the medicine I was taking, and had thought my liver or kidneys were failing, not to mention my heart.

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Mom knew we were coming. We had phoned her on our way and she even said she would prepare some Haitian chicken.

After the long eight-hour drive, around 11:30 p.m., we arrived at our mother’s senior high-rise apartment building. My twin sister and I each carried up our cat in its carriage and a few of our personal items. It’s a cumbersome routine, and although there is an elevator, I had to stop outside of the elevator to catch my breath before we knocked on our mom’s door. I do this so that I don’t stand there panting and out of breath when Mom opens the door, and my sister waited with me to make sure I was OK.

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In January, I posted a blog about my friend Nicole, a young adult I recently met with a CHD diagnosis and story very similar to my own. When I spoke with Nicole for the blog post, I was also able to ask a few questions to her mother, Jane, about how Nicole will be transitioning into adult care.

To coincide with Mother’s Day on Sunday, presented below is an abridged version of the interview.

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Recently, researchers at Rice University and Texas Children’s Hospital have turned stem cells from amniotic fluid into cells that form blood vessels. Their success offers hope that such stem cells may be used to grow tissue patches to repair infant hearts. Read more here.

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There is a game we played when we were kids back when we lived in the projects in my hometown. We all lined up in the same spot, ran around one of the apartment buildings, then raced back to the same exact spot where we had started, shouting out, “Last one in is a rotten egg!” I hated playing this game because, usually, I was the last one in.

However, sometimes my twin sister would go slowly, intentionally, so I wouldn’t be the last one in.

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Goodbyes are never easy.

A few months ago, one of my doctors informed me that she would be moving away so that she would be closer to her children and for her own spiritual journey in life. This news came as sort of a shock, only because I had thought I would be the one who would move away first. In fact, I had moved home for a few months to help my mother, but I had plans to move back.

My doctor is so stable that I took for granted that she would never move away. She helped me get stable and taught me how to be calm and breathe in oxygen. She once likened my life to a plate full of marbles—it’s been so unsteady. And, she once told me that my sister and I must have guardian angels as tall as the Empire State Building. She was also one of the main reasons for my moving back.

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When I think about how I lived through the horrifying and tragic events of 9/11, traipsed nearly eighty blocks after a major Northeast blackout, and survived a mass transit strike during one of the coldest winters, it doesn't surprise me that my twin sister and doctors call me Superwoman.

To me, though, when I think of Superwoman, it conjures up scenes of a super human with powers enough to have been able to avert a tragedy like 9/11 so that no lives would have been lost, or someone who has the power to prevent any undue hardships caused by a major blackout or transit strike. And, Superwoman's heart would be perfect, not needing to be repaired.

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These days when I listen to my heart I hear things that are sometimes too hard to bring to the surface. Like the pain of being divorced twice and the reality of possibly never being in a successful relationship in the future. Like the pain of trying to have a child despite that I put myself in extreme danger by getting pregnant twice, but both times having ectopic pregnancies, which almost killed me.

I'm constantly being barraged by other outside forces these days too. My lately nomadic lifestyle, my impulsive decision making, and not being grounded, keeps these deep-seated feelings buried alive, keeps me at ground zero, prevents me from getting from point A to point B, and hinders me from making any real progress.

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For the first part of this blog post, click here.

The first ACHA Conference I attended was in the summer of 2005 in the New York/New Jersey area. I remember that day so well. I had been going through a separation from my now ex-husband. I was feeling sort of emotionally raw, having been out of touch with everyone at ACHA, and I was feeling isolated and sad. However, at the conference, I met some of the best doctors for my specific heart physiology and defect.

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