getting to the heart of it all
November 08, 2010
Over a month ago now (the longest month of my life), we were sitting in a windowless ultrasound room, listening to a doctor purse her lips and say "I'm concerned about your baby's heart."
And there it was. The phrase that would change our lives forever. We held hands. Somehow we were led through the labyrinth of the women's hospital to the children's wing, and into a pediatric cardiologist's office. The echocardiogram confirmed what the doctor had suspected; Lachlan has hypoplastic left heart syndrome, or HLHS.
We had just met this beautiful baby boy on screen, seen his long fingers and watched as he went from bouncing around to curling his arms up over his face for a little snooze.
Another boy. Everyone always says that each child is unique, that siblings can be as different as night and day. Finn began his life gently; I sang to him as I held him in my arms and nursed him right away. Patrick held his tiny body to his chest where he took his first nap, listening to the beating of his daddy's heart, rocking away with the rise and fall of his chest.
Lachlan will likely be whisked away right after birth, poked and prodded, given strong medication to keep his heart delivering blood to his body, and put on a respirator. Within a few days, he will have his first open heart surgery. I don't know when I'll be able to hold my baby in my arms. It could be weeks. All of this so he can have a chance of surviving in this world. If he makes it through the first few months, he will have another open heart surgery, followed by a third when he is a toddler. My heart really breaks when I write this, but it is nothing compared to the pain and suffering he will have to endure because, well, his heart is literally broken. I'll just swallow my figurative stuff for now.
So that's what's been going on behind the scenes in our family. I'm finally able to write about it. At first we were just so shell shocked that I didn't know what to think - and words don't come easily when nothing makes sense in your head. Here we are now, our reality adjusted, mentally preparing for a very different kind of welcome for our second child. We hold to a cautious optimism that Lachlan will come out winning in this coin toss, able to live a joyful childhood and adulthood despite having half of a heart. We will probably go elsewhere to have the surgeries performed, most likely Philadelphia or Boston - the hospitals with the best success rates for treating HLHS in the country. Here is a link to a series of six videos put out by Children's Hospital of Philadelphia about the disease and its course of treatment.
Most days now we're doing pretty well, allowing ourselves to get comfortable with uncertainty, to find peace in the midst of circumstances that have spun us like tops into a different life trajectory. Lachlan bounces around, full of life, in my womb. Finn lifts my shirt and says "Hi Lala," waving to his little brother. We make oat bran muffins and hang out at the park. I clean the house in an odd case of nesting - we're not likely to be able to return home until (at best) three weeks to a month after he is born. Life goes on. A different sort of life. A tender life, a more fragile life, but a life where joy and love is still possible in each and every present moment.
I refuse to let the lack of a functioning left ventricle define who Lachlan is, and who he might become. He is a person, not a "hypoplast," a term medical professionals use to refer to children with this condition. He is my son, my sweetheart, a little baby, a being full of potential, a unique individual. I refuse to let worry move in and push out the ability to enjoy his presence in this world. He may be with us for a short while, he may live to have his own family; what matters is the preciousness of every moment, the connections made in moment after moment.
So I'm not sure how much I want to talk about, or dwell on, Lachlan's medical issues in this space - despite the warm support we have consistently received from you, friends as well as readers and commenters. We will be living through many tough times in the coming year especially, and I cannot keep that fact from seeping into my writing here. But I need a place where I can focus on positive, beautiful moments in our lives, where I can continue to share what I make with my hands. This blog helps me connect to a creative, caring community, which serves as an anchor as turbulent waters toss me about.
So yeah. I won't rename the blog "Lachlan's Heart," just as I wouldn't rename it "Finn's Really Bizarre-Looking Toes." They are my boys, little beings defined by so much more than their physiology. And you know what? Sew Liberated is taking on another meaning. In creating, I find peace, a state of liberation from worry, from the false assumption that we really have any control over this experience we call Life. It's a meditative process, working with your hands.
Sending love to you all,