Thursday, October 29, 2020

A Letter To Parents Of Children With Disability And Special Needs, From A Pediatric Nurse

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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 with disability And special needs 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 children with disability special needs. 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. 

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