I am the maker of an imperfect heart

My daughter was born with a congenital defect. I need to be strong, but the mom guilt is tearing me apart, Rebecca Davey writes


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We are imagination queens. Together we make up elaborate worlds that I can’t keep track of. Today we are eating sunshine. Tomorrow, we will be dogs.

Apparently, it isn’t until the age of four that children start to differentiate between the real and the imaginary. The real story that you are only starting to absorb is that you were born with a congenital heart defect: Tetralogy of Fallot – a condition where four things go wrong in tandem during the formation of the heart in utero. My utero. You had open-heart surgery when you were six months old.

Daddy and I have been talking about your check up for a few days now. Preparing you. Now, you lay bravely on the table wearing the white night gown we told you about. Daddy tries to make it fun, “Look it has long sleeves, just like we thought.”

You don’t yet know that also part of your story (and mine) is the trek back here every year to have your heart assessed. You just know about this moment and the stuffed animal reward that we have discussed. I can see the possibility of a rainbow unicorn dangling in your mind jamming the tears back down. I give you a thumbs up. You give me one back. I mouth the words, “I love you.” You nod.

For me, the parent, I know this is my time to shine, to be brave and strong and show no fear. I’ve been through heart surgery with you. I’ve seen you filled with tubes. I’ve held your recovering body in my arms, trying to find and comfort the flesh amidst the cables. How hard can a check up be? I sit on the end of the bed and calmly stroke your leg while the technician begins the echocardiograph of your heart. But my body remembers the pain of this place and I am right back in that first moment when they gave us the news. I could almost throw up. I catch your eyes filling up as the technician shifts your little body on the pillow. You don’t like being touched by a stranger, but you make yourself okay. I try to do the same.

Your heart pumps on the screen. The technician tells you it’s a beautiful heart. I think that’s a nice thing to say, but at the same time, I wish she wouldn’t lie. We wouldn’t be here if it was such a good heart. One, two, three … she lines up the pictures neatly … squirts a little more gel onto the instrument and then runs it across your chest. Click, click. More pictures. She twists your body every which way to get the “right view.” She leans you against a pillow and tilts your head back so your chest is all puffed up. She assures you it doesn’t hurt. I wonder if she really knows.

The interminable morning doesn’t end until we sit face to face with the doctor and hear the news (there’s always news). He suggests an MRI for you in a couple of months so we can get a more accurate reading on how fast the right ventricle is enlarging. Though they had once suggested the valve would need replacing around the age of 20 or 30. Now, he suggests maybe 14?

I ask him if he’s disappointed by these results. He’s startled by the question, but concedes a … “Yes.” He assures you that you can wear goggles in the MRI tunnel and watch a movie and one of us can even join you in there. Like the old days, I am starting to go numb. I wonder if the tunnel can handle my grief. I am the maker of an imperfect heart.

When the appointment is over, I want to run to the car, but you want to meander through the gift shop. It’s not until we can find the perfect stuffed unicorn and maybe a magic wand that we can finally leave your heart here for a while.

I started a checklist of the times we were just as strong as you. After your surgery, we took you home before you were even completely healed. We told the doctor you could heal better in your own home away from the incessant noise, the constant beeping (oh my god, the beeping) of the hospital. We endured waking you up every four hours for your alternate doses of ibuprofen and Tylenol (the perfect cocktail for pain), no matter how peacefully you were sleeping and despite your shrieks of protest. We agonized over the fluid in the drainage tubes hanging out of your belly, waiting for it to turn from milky white to clear so they would take the tubes out (I could weep over those drainage tubes).

Six sessions into therapy, I finally acknowledge my trauma. I confess my feelings of inadequacy: I, the maker, made a defective product. I am flawed then. I am allowed to speak about my grief; I can cry for what I lost. I can be weak and cry until I’m dry if I want to because there’s no one watching me. Here, I don’t have to be strong.

The Hospital For Sick Children never offered us trauma counselling. My therapist is surprised. I conclude that because the heart is a muscle they know how to fix – a structure – they think the journey doesn’t need healing. Violet, the poster child for Sick Kids – the face of healing. Donate now. Never mind the grieving mother with her vivid imagination watching her child’s life hang in the balance.

“Don’t cry because your eyes aren’t the colour of rainbows!” I tell you.

“But why aren’t they?” you ask.

You run to the mirror: “What colour are they?”

“Brown.”

You’re devastated, but run back in for one more hug.

“I love you a million,” I say.

“I love you a million plus nine thousand six and seven.”

You plant a big one on my nose. I miss and kiss your eye.

Rebecca Davey lives in Toronto.

Source : https://www.theglobeandmail.com/life/facts-and-arguments/heart-of-my-heart-my-daughters-congential-defect-is-tearing-mineapart/article36055781/