A Letter to Parents of Medically Fragile Children, From a Pediatric Nurse

I’ve worked in pediatric nursing for more than a decade. This work has changed me more than anything else I have experienced in my life. My patients and their families have taught me more than I could have ever taught them. I am so grateful for this extraordinary life.

For most of my career, I have worked with disabled and medically fragile children. During my shifts, I have given G-tube feedings, administered medications, held children while they seized, suctioned airways to ensure a child could continue to breathe, moved their limbs so they didn’t stiffen, coordinated all of the child’s therapies and all of the many other tasks needed simply to keep the child alive and comfortable for another day. At the end of my shift, I am always dripping with sweat and exhausted — ready to go home. I give a report to the you, the parents, at the end of my shift, and even though you may have already worked a full day at your own job or worked beside me with your child, you do not get to rest. You are the parent of a child who needs round-the-clock care, and there is not rest for you. I have seen your tired eyes and weary bodies day after day, and yet, you never give up on your child. 

In my career, I have sat beside parents while a doctor gave them the news that no parent should hear — that their child is not long for this world. I have held mothers while they wailed the most horrific, animalistic sound of grief after their child took their final breaths. I have placed a morgue tag around the toe of tiny bodies. I have waited until my shift is over to run to my car and desperately cry into my steering wheel with grief for my patient and their families. But, even though I was grieved, I got to go home to my own healthy children — you had to live the remainder of your life with empty arms. 

The parents I have worked with have often shrugged away my compliments at their strength and tireless work to benefit their children. They have reminded me that they did not ask for this life, but that they love their children enough to keep fighting. You may not have asked for this life, but you have taken it on with such grace and persistence, even in the face of steep odds. Your incredible strength inspires me in every area of my life. 

I have worked with children when new medications, therapies and treatments did not work, or worse, were detrimental to the child’s health. I have seen you agonize when doctors give you choices and you aren’t sure which to choose for your child. I have seen you search the internet with sleep-deprived eyes to find every bit of information you could before making your choice. You often know more about your child’s condition than any doctor or nurse ever could. I have held you while you wept when the choice you made did not turn out the way we had all hoped it would even though you were never, ever at fault for any treatment that failed. I may have administered the medication or treatment, but you were the one who held the emotional burden of the choice and lost sleep praying over the outcome. No matter how many people are involved in your child’s care, I know you carry the heavy, heavy weight and desperate wanting for your child’s health and well-being. I know this weight is carried 24 hours per day on your already weary shoulders, but you carry it with such grace that many do not notice. 

The very first family of a child with conditions I worked with told me to never take away their hope. That has become a mantra of sorts in my life — to “never give up hope” in my personal life and my work as a nurse. I have watched children walk, talk and achieve many things the doctors deemed impossible. I have seen children live for many years beyond what many specialists said was possible. I have seen children beat odds in extraordinary ways that is nothing short of a miracle. I know your child could not have achieved these miraculous things without you, their dedicated parents. 

The children I have worked with are some of the most extraordinary children on the planet. They inspire me beyond words. Over and over and over again these children — your children — have reminded me what a true miracle is. I am so thankful for them. Just as much so, I am thankful for you– the parents of these children. Many of you are so humble that you may shrug off my words, but I wish to say them anyway. You are amazing, strong, compassionate, incredible people. Your children would not have made it this far without you. You are the backbone of your child’s life. I see how absolutely, back-breakingly exhausted you are and how weary you are with the constant, unyielding stress of this life. I can only imagine how hard your life can be. I see you. You are not invisible in your struggle, although it must often feel that way. You are my heroes — cape-less but no less amazing. There are no words that can truly tell you how extraordinary I think you are. 

I know an open letter on the internet from a stranger is a cold thank you for you warriors. I know. It is simply too hard to continue to stand aside and not tell each and every one of you how amazing you are, and I have no other way to do so. I know how invisible and lonely you must feel at times. I want you to know that I see you. Many see you. We are inspired by you, each and every day. You make this world a better place, not only for your child but for all of us. You thank us, your nurses, at the end of every shift, and I wonder if we should be the ones thanking you — for giving us the extraordinary gift of getting to know your amazing children and their phenomenal parents. Thank you, from the very bottom of my grateful heart.

All my love,

Nurse Mandi

Follow this journey on The Zen RN.

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