Greater love has no one than this: to lay down one’s life . . .
John 15:13

Dear Heart Moms and Dads,

Yes, you know who are. No one else might, though. 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 they smear butter cream all over their clothes, and you take their shirt off because they’re little . . . and whether you want to be talking about the zipper down his front or not, you are.

You’re the one taking the very important phone call from the compound pharmacy, balancing little one on hip, losing signal as you try to beckon to 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 four 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 judgement in their eyes. Like 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 that 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 am, just watching, just praying for one more good appointment 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, echos, and x-rays, finding sitters for the other kids who you just want to stay home with and do the ordinary naptime homework “5 more bites” dinners, throws the huge, crazy, birthday party . . . because you know like I know, TODAY IS OUR DAY, and tomorrow may never come.

You are 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 have held and kissed your life away and prayed it would come back to you. You have sat and waited for strangers to bring your life back to you. There was no other choice.

You fight instinct: 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 have 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?

In all things, you fight with all your heart. No matter how tired, how alone, how misunderstood, you never stop. Even when you’re so brittly 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.

Taylor

This is dedicated to the Heart moms I look to for courage: Aunt Mary fighting for Matt, Mandy who fought so valiantly for baby Wyatt, Kasha fighting for Mitchell, Andrea fighting for C right now at Children’s, and McCayla who fought for baby Noah. You are my inspiration! I tell myself: Taylor, you can do this. SHE did this . . .