HLHS (Hypoplastic Left Heart Syndrome)

For Josie



They used the word defect, more than they should have. Because baby girl, you are no defect. You are no long named problem with your heart or just another pale fragile patient. You, angel, are a wonder. The white plastic flat hospital bed was caged around you, the first time I saw you. It held you away from me. It trapped my baby sister inside its cold arms. I couldn’t see you. I couldn’t touch your soft baby skin. I couldn’t feel your little red fingers clench around mine. I couldn’t hold my baby sister. And I couldn’t kiss the very soft beginnings of hair of your tiny baby head. Tubes that were plastic and pale wormed around you. You were only in a diaper, baby sister, and you looked so small. An oxygen tube was stuck in each nostril, a constant reminder of how little it could take for you to leave us. Your first surgery, and baby girl, you were only barely a day old. A white knitted hat was on your baby head and a tiny hospital bracelet on your right wrist. Baby sister, you were perfect to me.



Stage Two:

You grew fast, baby girl. You loved the world around you, and acted like any other angel baby. Except you were not: You were my angel baby. My little sister.   You were a pale and beautiful warrior angel, and I didn’t want to think about a day where you would really become an angel. It could have happened, baby girl. You could have left us, little sister. And I don’t know what I would have done. Your first surgery was only at a day old, but it was clear you would have to have another. And baby girl, you were six months old. You were peering at the world with bright blue eyes, and it hurt to know that you would go through it again. More time without me touching your dimpled hand. More waiting before I could hug you to my chest. More waiting before I could kiss your soft baby cheek. And angel, I didn’t want to have to wait.


I came in after the surgery, and there you were a baby girl. Laying on your back, your baby belly button a sickly yellow. Your eyes were closed, and oxygen nubs stuck in your nostrils. Your rainbow silk blanket was tucked beside you, and a family photo album made out of soft cloth beside that. Oh baby girl, you looked like you were gone. You had blue and white stickers all over your chest, and cords of every color. Thin blue ones, thick grey ones, medium size white ones. And one was in your chest for the drainage. Baby sister, you were perfect.


You laid on your back weak for days, and could only move your beautiful blue eyes around the sterile hospital room.


Your arms and legs were wrapped in padding whenever our mama held you and rocked you back and forth.


You were just a baby. Just a six-month-old little baby and you had already had two heart surgeries.


You cried whenever you sat up, red-faced and tears streaming down your face. It hurt. And baby sister, I wish it didn’t have to.


Yet angel, you still smiled your baby smile of all gums. You still gazed innocently at the world around you.


Baby sister, you were perfect to me.



2 Years:


At two years it happened again. They took you away from me, baby sister. They stepped onto a plane, and this time I couldn’t come.

Three long weeks, baby sister. I waited for you to come home.

This time it was worse, I couldn’t even see your little round baby face. Or hair. Or hands. Or smile.

But when you came home again, more scars on her chest, it was worth the wait.

My piggy bank may have been empty, but my heart was full when I saw you hug the ballerina doll to your chest.

Baby girl, you are not, and will never be just a heart defect.

It doesn’t matter that you can’t run as fast as the other people on your soccer team, and it doesn’t matter that your chest has a billion scars.

You have battle scars, baby girl.

Ones you should be proud of because I sure am.

Some shirts show the scar because it creeps up to your collarbone, and sometimes you are ashamed, to have something that other little girls you know don’t.

Baby girl, you are not so little anymore, and the nightmares do not come as often.

But remember: If they do, don’t hesitate to wake me.

I waited so long, and through so much for you, that an hour of sleep, is just a blink of an eye.





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