An ICD

Last Tuesday, at 5:30 am, I woke and dressed myself, fixed my hair and my face. I skipped breakfast. I kissed my sleeping little ones and thanked my Mom for staying to get them off to daycare and school. Then my Dad and I got in my car in the still darkness and drove to the International Heart Institute at St. Patrick Hospital. 

My attempt to dispel my own fear through fashion and humor. 

It wasn't a question, anymore, of whether the procedure was the right choice for me. I've lived with Long QT Syndrome all my life without knowing it; the Junctional Bradycardia came later, but two types of heart disease working in tandem was finally becoming more than my brave little ticker coud take. I was out of breath and having flutters all the time. My hands constantly shook, my feet and ankles swelled, my heart rate was far too low, my blood pressure was far too low and bottomed out when I exercised.  I waited for what one doctor told me was my "inevitable" cardiac arrest. It was time. 

And I was/am grateful. Despite my nervousness for the surgery, I can't deny my wonder and awe of the technology. After two hours of prep, question-answer sessions, including holding a model of the soon-to-be-in-my-body device in hand, and convincing my very good-natured doctor to make the necessary scar shaped like a lightning bolt- I even brought him the template I'd made Monday night-and easing into the conscious sedation, I was in the operating room. 

I tried to get the whole surgical team to squish in for a picture before they took my phone away, but I felt very disconnected from both my brain and my thumbs at that point. I remember blaming my inability to take the shot on the lead walls of the room, which, I'm fairly certain, is not true. There was an enormous computer screen, and. I vaguely recall Bearded Surgical Man pointing to some charts and stats on the screen and saying, "that's you." This thrilled me to no end. So much so, that, after transferring myself (I'm sure I had help) from the cath lab bed to the operating table and complaining that the bed had been more comfortable, I fell sound asleep. 

I'm certain, in the course of the next two to three hours, many medically miraculous things happened. I had a blue sheet over my face. I remember, at one point, trying to sit up so that I could make sure Riley had gotten on the school bus, and the nurse reassured me that my Mom was taking care of my kids. I remember thinking, repeatedly and very intently, that I wanted to look at what was happening, but I'm not sure if I actually said it out loud. The moment when they took the blue sheet down and I saw only bandaging on my chest was a disappointment, as if I had missed a once-in-a-lifetime opportunity because I hadn't made myself heard. 

They let me keep my earrings in. Just tucked them in the hair net. 

Wheeling out of the OR and into recovery, the nurse, Theresa, must have given me my phone back because I made a ten-second video of nothing and immediately started taking pictures. 

I know my parents took turns sitting with me in recovery...some fuzzy remnant memory of my Mom spoon-feeding me cream of wheat (heehee: Warm Bodies ), and me telling her how I'd organized the lumber mill, exists but that is all. Then suddenly, and I honestly don't remember the changing of the guard, but she was gone, and my bestie Sandi was there. 

I know I was happy to see her, but as far as my own memory goes, I have no idea what we talked about or anything that happened in those hours. Sandi tells me I insisted on getting up to go to the bathroom by myself and nearly fainted, imitated the accent of my Bulgarian nurse, Seva, and ate a chicken chef salad and a strawberry milkshake. I got nothin. 

Some love from my kiddos once I got to a private room...

...one rough, painful, emotional night in the hospital...

...and suddenly I was home. Transformation to bionic woman complete. 

I know I needed to do this. I know that, in time, this device will simply become a part of me and I won't notice it working the way I do now. I won't even think about it. And, even if I do, the thoughts will be of gratitude that I don't have to worry, like I used to, about my heart stopping at any moment of any day. The pacing function of my device corrects the Bradycardia and can, if necessary, attempt to even out arrhythmias. And the defibrillator function will save my life if/when that day comes. 

This Tuesday, I will visit the heart institute again to have my device tested and my lightning bolt scar unveiled. Of course I'll post pictures and an update. Until then, rest. Reflection. Gratitude for my family and friends who are helping me through, gratitude that my daughter does not have to go through this yet, but if that changes, her life can be protected and preserved through technology as well, and gratitude for every beat of my heart. 

Lorrie, Joanna, and Me

In accordance with the pledge I made in, er, November, to share my writing more regularly (actually I think I said "daily" and then begged for reinforcements of flattery), here are a couple of pieces which have come out of my recent poetry and creative writing workshops. Open to critique.

In this class exercise the idea was five minutes to write a scene in which infidelity is revealed, using the style of an author we had recently read. I chose Lorrie Moore. 

She is in the middle of apologizing to him for the bruise on his face,  a by-product of last night's vivid storytelling gesticulations, when he tells her he's been sleeping with his secretary. The air immediately surrounding her head reverberates with the echoes of a half-million decent screenwriters cringing at once. She drops her coffe cup. 

Here is the picture: white sofa, silver chair, basket of oranges on the dark wood table, morning sun, curtains half-drawn, coffee--two sugars no cream--on the carpet. She is standing. He is sitting. Somewhere, Woody Allen strikes a typewriter key and changes her fate. 

This poem draft is the result of an exercise in which each class member selected words, lines, or phrases at random from another poet's published work, then altered, arranged, and added to those lines to create a poem. So I can claim the beauty in arrangement here, but the majority of the words belong to Joanna Klink. 

Beyond the crumbling walls,

Pale pink as the daylight, 

A woman sifts through paper.

Barely perceptible, she becomes forceless. 

Close to animal, the man understands very little.

He forgets her. 

I can think of three ways frost burns, 

But reason wilts like other things. 

The woman dips her hands into the river,

Gratified to think no one has noticed her. 

But we are here, 

Beyond the crumbling walls,

The man and I. 

Reasons Y

To counterbalance last week's frustrated rant, and for the good it does my soul to speak positive truths, I'll share some gratitude today. A couple of years ago I shared a post on the joy our family found in joining our local YMCA. With all the things that have changed in our lives, this is one that has not. I work at the Y now, part-time, and last week I had the opportunity to speak at a luncheon to a group of coworkers and fundraiser volunteers about my experience with this incredible organization. I've taken out the names of the people I mentioned, just for privacy's sake, but the rest of that speech is here, word for word. I mean each one. 

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I want to thank you all for the opportunity to come here today and share my Y story. My story is very personal, but I believe it is in the moments when we, as a Y family touch each others' lives personally that the true worth and value of the YMCA organization is revealed. Through the three tenets of the Y vision--Social Responsibility, Healthy Living, and Youth Development--we have daily opportunities to share the human experience and affect lives in our community. My family's life has been positively impacted by the Y in more ways than I can express.

In September of 2013, just before I began working here in Childwatch, my thirteen year marriage came to a sudden and unexpected end. Saying nothing of the emotional devastation his absence wreaked upon me and my three children, the financial support he provided for us was very suddenly and very drastically reduced. I, a veteran stay-at-home-mom of nine years, who'd dropped out of college to move for her husband's career, found myself in the position of parenting and providing for three young children 90% on my own. I was determined to take care of them, to heal, to go back to school, to work hard and show my children how to rise above the hard knocks of life, but I needed help. I needed childcare for Jasper, my youngest. I needed a safe and healthy environment for Laurelei and Riley, my oldest and middle, to be in after school. I needed a place where I could come and get the regular exercise I need to manage the heart condition which affects me. And then, as the year progressed and my daughter Laurelei was diagnosed with the same potentially fatal congenital heart disorder, I also needed her to be around people who would look out for her, people who knew how to use an AED, people who could keep her safe while still allowing her to be the irrepressibly active kid she is. 

Through the generosity of donors who make program and membership assistance possible, we have found what we need--and beyond that, what we want and love: an environment which has strengthened us through the most difficult trials of our lives--here at the Y. ___'s help was invaluable in helping me to set up our family membership in an affordable way. In a matter of just one day, ___ and ___ and I were able to get Jasper set up for daycare at the Development Center, and later I applied for and received assistance in putting Laurelei and Riley on the Rock Climbing Team. Yesterday at the climbing team's first practice, I showed up at 4:30, ready to brief Coach ___ and Coach ___ on Laurelei's medical condition, only to find they had already been filled in. They were on top of it and knew what to do. 

As a mom who, by necessicity, can no longer be at her children's sides quite as much as she used to be, or quite as much as she'd like to be, I am relieved and grateful to come to the Y each afternoon and find my children happy and engaged in healthy activities. Whether that is Jasper smiling and laughing in the daycare or Laurelei and Riley playing a game in the Youth Center with ____ or ____, or climbing on the rock wall, or running around in the gym, I know they are surrounded by people who truly care for their well being. To also know that circumstance is one which will never be dictated by our financial status is an added comfort and blessing. I am determined that someday I will be the donor who writes the check that changes a Y family's life. Thank you, each of you, for volunteering your time to help the Y and so many families like mine. 

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An American Childhood

I am frustrated recently, but particularly today, with myself, with this culture of busyness and over-achieving expectations that is the way of the modern American family and with my submission to it, against my better judgement and wishes. Does anyone else feel, I wonder, that our protestations are worthless? Because, in the end, what is our choice?

I spent an hour last night googling "time management skills for kids," "too much homework for elementary schoolers" and "teaching kids to be self-directed." I hated that hour. But night after night, weekend after weekend, I find myself nagging my fourth grader to catch up with all the schoolwork she's not getting done in class and in homework time. My stomach turns as I, standing beneath the embroidered Play is the Work of Children wall hanging in my living room, cut her play time short or make her free reading time dependent upon schoolwork accomplishments. And when she brings home high test scores but low overall grades because her work is not done, I don't know what to think or do or say.  I hear myself, as if it not myself, rushing her and her brother to school each morning, quick breakfast in hand, saying "if you don't learn to hurry you won't make it in this world." 

What the hell?

I have become, in my singledom, that parent I always judged so harshly. That parent who uses the school system for childcare because I HAVE to go to work and to school. That parent who doesn't serve on the PTO or volunteer in the classroom or get involved in anyway because there is literally NO TIME. I am the mother who hates the system of busy work and pointless desk assignments and government testing, but does nothing about it because she can't even figure out what to do about paying the bills. I conform and I push my children to conform, all the while telling them it's wrong, wrong, wrong. 

What do I do?

My children's extracurricular activities are minimal and, I feel, really more valuable to their development than many aspects of school. My time, on the rare occasions when we are home together, I focus on them, leaving my own studying for midnight or between classes or when they are at dad's. We don't watch tv, or play video games, or waste time in any other way. I try hard, so hard, to allow them time to eat well, to wonder and talk and discover. But it's not enough. I feel I am building broken children, only slightly more whole than their broken parents by virtue of their natural strengths. 

Reason would tell me I have two choices:

Opt out. Out of society, out of school. Go off the grid or out of the country and let my children grow up in wild wanderlust, isolated from deadlines, grade books, and competitions of social expectations. If I were independently wealthy I might give this some serious thought. 

Or

Get married again, and share the burden of providing and the responsibility of parenting with someone else, hopefully creating in that convergence some time not spent rushing and pushing and nagging to do, go, be. But at what cost to me, and the emerging sense of self-worth I have grappled to cultivate in the last six months? At what cost to my independence and goals and plans? At what risk to my heart?

I cannot afford option A and I fear option B. 

I suppose there is option C: Find the balance. Guard my words. Teach them what's important and when it's okay to fail. Make sure, somehow, that they are learning, not just memorizing, and that their opening souls are being nourished even more than their minds. And fumble through these years of hurting and healing without looking back in longing for the life that was better in some ways, but never quite right. What we have is now, my three babies and me. An American childhood, in a middling sense, with moments of both the best and worst.