A Letter to My NICU Self

Dear Me Standing By the NICU Bed,

Today you gave birth to a tiny miracle after carrying her for nine months in your tummy. However, things are not going the way you pictured in your dreams. You are now standing in a room full of beeps, wires, nurses, and doctors. Your precious miracle is hooked up to machines and lines. You are scared to even breathe because you do not want to mess them all up. It is not the picture you saw for nine months. You are scared and feeling so alone in this storm.

Take heart, sweet mom, this will not last forever. You will face some scary days full of dark moments as you learn the full extent of your child’s medical needs. You will cling to your husband and family as sobs wreck your body. You will go home without your tiny miracle for a time period. But the nurses and doctors are there to care for the babies as you care for your healing body and your breaking heart.

You will grieve your version of motherhood, and it will be a painful time. You will stare in envy at other moms as they leave the hospital with their tiny bundles. You will stare in the mirror and not know who is staring back at you. Your face will be a mask of confusion and fear.

But I am here to tell you that this time does not last forever. You will come out of these dark days. You will dress her in her pretty pink rose outfit and bring her home. You will hold her close as she drifts off to sleep in your arms. You will laugh when she poops all over your husband as he holds her.

You will learn that you are not only a mom, but that you are now a caregiver to a special little human. You will learn more medical terms and conditions than you ever thought possible. In those first few months you may spend more time in waiting rooms then on strolls through a park, and you will learn daily more about her conditions. Do not be scared of these specialists. They are here to help your child and answer your questions even if you fear they are stupid. These people will be with you on hard days like her first surgery, and on happy days like when she finally learns to walk at age five. They will hold your hand in the good and the bad. Trust them, lean on their knowledge. Let them teach and guide you.

I beg you to soak in those precious days and months when she is little. It will be easy to focus on the medical, but I beg you to see the baby as well. I am here to tell you that you will regret it if you do not listen to this advice. I learned it the hard way. Hold her late into the night when she is crying, rock her as she takes a bottle, read to her cute books about ducks, and laugh with her at how silly daddy is. Don’t get lost in the diagnosis, get lost in the coos!!! Trust me, don’t live with this regret.

I am here to give you comfort, younger me. You will survive this! You and your family will face hard and dark days. Your daughter will have painful surgeries, face painful struggles, and you and your husband will make hard decisions. But you know what else, you will have more strength than you ever knew you had, you will laugh and play, you will get to watch her dance her first ballet recital and you will cry like a baby as she dances. You will be there rejoicing as she learns to walk after years of therapy. You will hold her hand when she hurts, and you will hold her hand as she dances in your living room to yet another playing of her current favorite Disney song.

You will survive these hard NICU days!! Take heart new caregiver, step into your new role with grace and hope. Ask for help and take it when it comes. Hold your miracle and know what true love is!

Love and blessings,

The Caregiver Mom You Grow To Be

Rachel Zook is a stay-at-home mom of two beautiful children. Taylor is six and Emma is eleven years old. Emma has multiple medical diagnoses which include deafness, VACTERL, and physical delays. They like to call her complicated when asked by others, because to describe what VACTERL is and all the other issues that come with that would take too long. You can follow Emma’s inchstones at rachel-adifferentnormal.blogspot.com.