To All the Heart Mom and Dads Out There, I Notice You

Dear Heart Moms and Dads,

Yes, you know who are. No one else may realize. At least, not by looking at you. I’ll bet your heart kid looks a lot like mine: pretty normal with all of his clothes on. It’s only at the birthday party when the kids smear butter cream all over their clothes and you take your child’s shirt off that you’re forced to talk about the zipper down his chest.

You’re the one taking the important phone call from the compound pharmacy, balancing the little one on your hip, losing signal as you try to beckon to your preschooler to follow you down the hallway at the end of class. You’re the one begging the pharmacist to process this new prescription today while the 4-year-old screams at you because he doesn’t understand why you won’t listen and you left his art project behind and all you need is two more minutes on the phone with the pharmacy that’s closing for lunch. And you’re the one heaving in your car because mother after mother walked past you with judgment in her eyes. As if you’re on the phone chatting it up with your best friend about next weekend’s really crazy girls’ night out. Right.

You’re the one who has a hard time remembering a day you didn’t feel heavy, a day where breathing didn’t involve some actual thought. You’re the one who pushes through night after night of waking at every whimper squeaking out of your warrior. You’re the one standing over the crib or bed at 3 a.m., just watching, just praying for one more good day, month, year.

You’re the one — despite just being discharged from the hospital, despite a chronic lack of sleep, drug reactions, a full-time job’s worth of lab tests, follow-up appointments, echocariograms and x-rays, struggling to find sitters for the other kids. The kids who you just want to stay home with and do the ordinary nap time, homework, “five more bites” dinner with. You’re the one who throws the huge, crazy, birthday party — because you know, like I know, Today is our day, and tomorrow may never come.

You’re the parents who said yes to a baby who changed your way of life forever. Your time, your finances, your freedom will never be free the way it was before. Your heart has felt too much to ever go back to innocent unawareness, to small dramas and big plans. You’ll never plan the same way because you know now that the future is impossible to know. You’ll never look at life the same way because you’ve held and kissed your life away and prayed it would come back to you. You’ve sat and waited for strangers to bring your life back to you. There was no other choice.

You fight instinct — Mama Bear instinct. You give your child up to be sawed in half to save their lives, let strangers treat your child when you are powerless to help. You admit your inability and accept another’s ability because that’s what’s best for this life. You listen to their instructions, jump through their hoops, answer their questions and listen to them tell you what’s wrong with this perfect child you made. What’s wrong? This child is my child, and this child is perfect just the way she is.

You do all these things and more. You wonder whether a million decisions you’ve made have hurt or helped, from the exercise you did while you were pregnant to that anti-nausea drug they prescribed when you couldn’t stand up you were so all-day-sick. You wonder how it is all your fault, and whether leaving the heart kid in the car alone is more dangerous than bringing him in with you when you pick the other kids up from school. 

You persist in having a life, visiting family and loving on cousins but wonder where the balance is between boosting morale and winding up back in the hospital if your heart kid catches a bug?

You fight with all your heart. No matter how tired, how alone, how misunderstood, you never stop. Even when you’re so brittle-y bone-tired, even when you think no one even remembers that every day is a battle for you and your family, even when you can’t decide whether to spend your family’s dwindling funds on organic food or better vitamins or just a fun day out? Even when you feel like all you’ve been doing for a hundred years is carrying this child in a barren desert.

You wake up. You carry those children down the stairs. You make breakfast. You get the meds ready. You keep going.

You are brave.

You push past breaking and keep going.

You are smart; you know your child’s anomaly as well or better than their docs do.

You balance, stretch, adapt, sacrifice.

You give up your life to fight for your child’s.

Your heart beats for two and always will.

God bless you. 

Never stop being courageous, beautiful love. 

You are a light to the world.

Love, 

Just Another Heart Mama

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