I did not write this. But oh how I wish I had! As I celebrate World Prematurity Day today, I see not only my patients but their families struggling so much to deal with an ICU stay for the tiniest member of their family. I too see you.
I SEE YOU by Jodi Dolezel:
I have read your blog posts and your Facebook statuses, I have had the honor of getting to know a lot of you through social media, and I have watched and cheered your children on from the NICU days through early childhood. I have had the privilege of meeting some of you in person, and I must say you are an amazing group of people. You have candidly shared your thoughts, your lives, your children, and your heart with me, and I am truly grateful to have this bird’s-eye view of your world.
Being a NICU parent is hard. I know this, not because I am one, but because you have allowed me into your world and have given me a perspective that I would never have been able to have without this gift you have given me. To see through your eyes, to understand what it is like to walk in your shoes, and to really grasp the other end of the spectrum from your point of view. It is a gift, and I am, and will be forever be, grateful for it.
I know I don’t understand, and I will never understand completely what it is like to be you. Nor do I pretend to understand what you are going through. But I do want you to know that I get it. I get that having a child prematurely or spending time in the NICU is not what you had planned, and it is extremely hard watching your child suffer, feeling so helpless and full of fear. Having a medically fragile child is difficult, and you may feel alone, isolated, or invisible. But today, I want you to know that you are not alone, you are not invisible, and that I see you.
I see you rushing into the NICU with your hair pulled back and your sweatpants on. Bending over at the sink scrubbing your hands with intent, hoping and praying that you made it in time for the 8 a.m. feeding. You are beautiful.
I see you sitting at your child’s bedside, journal in hand, writing down your baby’s latest statistics: weight, isolette temperature, amount of oxygen, and ventilator settings. Things that no parent should ever have to think or worry about, but you do it. You are brave.
I see you walking the halls to the maternity ward to get a drink from the vending machine. You pass by a couple taking a stroll with their newborn baby in tow in a bassinet. They look so happy, you smile as they pass. The look on your face is one of admiration, but you march on. You are resilient.
I see you unpacking your never-ending pumping supplies, lining up your bottles, and preparing for your next power session, even though you did this routine just two hours ago. You are dedicated.
I see you standing over your baby’s isolette, counting down the hours until the next “hands on care,” longing to touch and hold your child, and praying you will get to have kangaroo care time today. You are loving.
I see you as other new parents enter the NICU for the first time. They are scared, nervous, and afraid of what the future holds. You too are worried about the future, but I see you approach them and offer a shoulder to lean or cry on. I see you explain to them the ropes, telling them that it won’t be easy, but assuring them that you are there if they need your help. You are compassionate.
I see you as the neonatologist leaves your baby’s bedside after giving you an update and the plan for the day. You look puzzled and somewhat afraid. Confused by the medical terminology, you ask questions, and you begin to research and learn all that you can about your child’s diagnosis and possible future. You are an advocate.
I see you as your family and friends visit your child, who has now been in the NICU for weeks on end. They ask questions, the wonder, and they sometimes make uninformed or even hurtful comments. They may fail to recognize that this journey is long and hard, not just for your baby, but for you, too. You don’t get upset. You answer their questions politely, and educate them as best you can, and then you thank them for their concerns. You are amazing.
I see you as you perform diaper changes through all the wires, tubes, and machines. You look beyond all this medical machinery and smile in admiration of your little fighter. You have been through so much, you have seen so much, and you have loved so deeply and abundantly through it all. You are courageous.
You spend countless hours worrying about, defending, and advocating for your baby. You spend days, weeks, months, and often years beyond the NICU experience learning best therapies and best medical devices, finding the best doctors and the best schools for your child. You may be burdened with huge medical bills. You may feel isolated and alone in this new NICU world and beyond these doors in the years to come. But today, I want you to know that you are not alone and you are not invisible. I can never truly say that I understand everything that you have been through, because I haven’t walked in your shoes. But I hope you can hear my heart when I say I get it. I see you.
I see you when you’re tired and at the end of your rope, but you truck on. I see you when your patience is wearing thin but you continue on with determination. I see the amazing strength you possess for your little one. I see you when you are astonished by the wonder of your tiny brave hero as you celebrate another amazing milestone. I see you when you are left standing between your baby and this sometimes cruel and critical world we live in. I see it all, and I see you.
I acknowledge you.
I admire you.
I applaud you.
Jodi Dolezel is a Registered Nurse and currently works in a single room family centered care level 3 Neonatal Intensive Care in the Charlotte, NC area. Jodi is also the founder and facilitator of Peekaboo ICU, where this post first appeared.