Poppy Seeds

Holes do not belong in baby hearts...


I’ve been having anxiety about the defects that “should close on their own” that Poppy’s cardiologist found on her first echocardiogram. Mama instinct. That nagging feeling inside, like hunger, but worse – deeper inside.

So I asked for a follow up appointment one year early. She was due back at 2 years old, but with upcoming surgeries, and the tachycardia that she experiences at even the slightest upset – I needed to sate my wandering mind.

Good thing I did. Good thing that I made that third appointment after having the office cancel on me twice. Good thing that when I showed up for her appointment yesterday and they told me she wasn’t on the books that I stood my ground and insisted she be seen by her cardiologist right then. Good thing that while everyone in the office rolled their eyes and talked behind my back and glanced sideways at me, the crazy mom with the funny baby strapped to her chest, I shrugged it off and instead whispered loving words to Poppy.

Good thing, because now I know that the hole in Poppy’s heart has not closed. It has gotten bigger. The chance that it will close on its own is no longer something to hope for, as it is moving in the wrong direction.

Poppy needs heart surgery.

Because of the placement of the hole the surgery will likely not be a candidate for robotic correction. This means they have to open the chest. I have to say “the chest” like I’m writing a report or something. I’m not able yet, to attach these words to my baby.

Now the questions pile up. When does the surgery need to be done? Will she have to have this surgery before her hand surgeries and next cranial surgery? What are the risks? Why is this happening? How do I cope? When does she catch a break?

I don’t know.
I don’t know.

I feel so utterly, and hopelessly alone. And I want to be alone. I want to disappear with my children to a land of make-believe. A cartoon. A storybook. Something less real. Something light.

Suddenly worrying about how to pay the electricity bill seems trivial. Maybe living in the dark would be nice. Maybe living in Plato’s cave would be better. Just shadows of things, ideas of things. Nothing real. No tangible predators. No actual holes in actual hearts of actual people.

This post has nothing to do with counting blessings on ten fingers and toes… rather, today marks the first time I have had to close my eyes and count to ten to keep from acting out in anger.

Today, while enjoying some good food and company in a public place, I heard through the clanking of flatware and dishes – “That baby looks weird! Look at that baby, Dad. Dad, look at that weird baby, it looks weird.”

Ouch. Ouch so deep that I almost threw up. I almost screamed. I almost grabbed my children and ran. But I was stuck, stone-still, absolutely shattered. It was the fathers reply that made it so maddening. “Yeah.” He said.

“Yeah”

There is a difference between complaining, and expressing distress. There is a line between empathy and sympathy that separates more than the two words – rather, it divides the special-needs sub-culture in half. I am GRIEVING. I am not feeling cheated, or wronged, or even (this could be shocking) chosen. I am feeling deep, emotional upset.

Some days I feel selfish and ungrateful for the secret feelings that sometimes well up, and out. I find myself counting every child’s fingers, staring at their perfectly round heads, their symmetrical faces. I do not wish to trade my sweet girl in for one with a round head and ten fingers – but I do wish she had been born without this syndrome – for her – for her suffering.

I mourn the child I thought I was having. The child that would stay, from the moment of birth, nestled against my bare chest. No need to ever be whisked away, poked, pictured, tested, splayed open, reconstructed. The child that looked like every other child we have ever seen – and why? Because we do not look at difference. We hide from it. We avert our eyes. We do not stare. We do not ask questions. Perhaps from fear, or uncertainty, or even disgust – we have learned our whole lives to look away.

As she grows out of her baby fat cheeks, toothless smile, sweet booty scooting, and kiss blowing – what then? Will the pillowy soft safety net of being a baby fall through? Will strangers stop waving bye-bye and telling her she is beautiful?

My heart is a mess.

Now, away from internal grief and on toward life, logistically :

I made eleven phone calls today. Doctors, surgeons, insurance carriers, social security workers, the senators office… My spirit is tired. Every line leads to another line, another apathetic voice, another “no” another “can’t.”

I am still in the appeal process for Poppy’s SSI and in the meantime trying to find creative ways to keep the lights on and little mouths fed. I am so thankful that somehow I have managed to keep afloat amidst the anchors falling…

Poppy and I took a break from papers and scheduling and phone calls to step out in the sunshine. We (I) blew bubbles, we (she) tasted dirt, and we planted flowers and food. She was so happy to have my full attention, and I was so happy to give it. I love her so much my eyes sting. My throat swells. If I could cry, I would.