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This is where I'm meant to be


Reflecting upon my time as a I/DD nurse, I realized too many people do not know about our little corner of the nursing world. Others don't understand the love you feel for your patients, or the heartbreak you endure when you lose them. This article started as an exercise in therapeutic writing, then I decided it was important that other people read it so that it can provide comfort, understanding, and a sense that other I/DD nurses aren't alone in this difficult yet fulfilling field.

This is where I'm meant to be

I write this as I sit next to the hospital bed of one of my patients. Tears streaming down my face, my eyes darting between the monitors that are displaying her ever-worsening vitals and her little, fragile body. I am heartbroken.

I entered nursing just over five years ago. From the day I applied to nursing school, I knew what field I wanted to work in - one many don't consider when imagining themselves in scrubs, armed with the knowledge from dozens of medical textbooks. I knew (and still know) that I am supposed to be a nurse that cares for people with developmental and intellectual disabilities.

When considering myself being a healthcare advocate, teacher, friend, NURSE; I saw myself doing all of that for people who are too often cast aside from the rest of society. Those that may not be able to speak for themselves. People who are much more complex than the adorably sassy girl with Down syndrome you see on tv or the "weird" kid from school that wouldn't ever look you in the eyes and had strange tics. Yes, these are the people I am placed on this earth to care for.

Upon graduating nursing school and passing my boards, I set out to find a job. Within a few weeks the perfect opportunity came my way: a medical day facility for adults with disabilities was opening a second location in the area and they needed a nurse. I sent in my resume, interviewed the same day, and was hired on the spot. The organization was a non-profit so I was going to make significantly less money than my friends that went into long term care, but I was ok with that.

Five years later, I'm still here. I've gone from caring for a couple of people a day, to over 40 people each day. I have people that have severe seizures, g tubes, trachs, behavioral challenges, fall risks, and meds each day. I have seen dozens of program attendants (aides) come and go. I have spent too many hours crying about being stressed from working with difficult staff, dealing with caregivers that refuse to listen to my professional opinions, and changes in management that altered the foundation of the organization. But I'm still here.

The joy I get from being with my clients every day trumps everything else. The hugs I get every morning when J comes in (or randomly when he decides he needs "his hug"). The handful of people that come to my office to help me sort my endless stacks of paperwork. The impromptu dance parties. The flicker of a connection with a client that is unable to effectively communicate any needs. The moments when I swell with pride that Mr. M walks up to a new person, introduces himself and shakes their hand despite the autism diagnosis that makes it so difficult for him. The weeks or months that we are able to get K's seizures under control. When Mr. B can get through someone mispronouncing his name without a full-blown meltdown.

These small moments are when I know I'm doing something right.

Today I'm sitting with a little lady that I have known for about a year and a half. She has never said an actual intelligible word to anyone in the time we have known her, but that is not to say she doesn't talk. Oh, she's a chatty one alright. Her "How you doing?" is the clearest thing that comes out of her mouth, but at that, it's all one 'word'. She is always ready for a hug, and despite her being just less than five feet tall, she has to hug you around your neck. She loves people. She really loves sneaking up on people and scaring them. She will talk to and laugh with anyone, even those that can communicate less than her. Her laugh is infectious. Her joy for life is tangible. Despite all this, her advanced age and fragile condition had caught up with her. She tried to fight, but her body just can't battle everything it's up against anymore. Her guardian has decided to withdraw care, so the hospital staff is providing her with comfort in her final days. There is no way of knowing when a person will pass, but the time is near. Staff from my organization have been with her for hours on end, trying to ensure that she's not alone or scared in her final hours.

Unfortunately, we can't be here all the time. I pray that she isn't alone for her final breath, because no one should be. I don't get paid to sit in a hospital for 4 hours before I go into work, but it is where I need to be. My college-age program staff who have parties to attend and homework to finish don't get bonus points for taking their own time to be with this woman.

I know I have done something right when these young women keep vigil over a client on their own accord. I am so proud to know that they truly love these clients, and all the other drama doesn't really matter when it's time for us to step up and be someone's family. My heart is breaking, knowing I have to say goodbye to Miss E., but I know I will see her again one day. She will be able to dance and sneak up on people without toppling over. We will talk and laugh and I will be able to understand every word she says.

This field may not be the typical type of nursing people envision, and Lord knows it has its unique challenges... but it is exactly where I am meant to be.

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8 Comment(s)

Beautiful words. May your little lady pass peacefully with you at her side.

I am also a DD RN and love my folks. This is so much different from the ICU where I started, but for me, much more rewarding.

Thank you for what you do everyday. We may not be among the highest paid nurses, but I think we are among the luckiest.


Has 10 years experience.

Thank you for doing your best to ensure someone is surrounded by love when they pass and for all that you do everyday. The world is lucky to have you.

You are awesome! I worked with DD adults before nursing school. Never knew there even was a role for nurses in that community... I am going to look into that now. I love my hospital job but I do miss working with that population. Thanks for this post :)

Brenda F. Johnson, BSN

Specializes in Gastrointestinal Nursing. Has 28 years experience.

Very refreshing. Bittersweet, huh? Thanks for sharing

Thank you all so much for the sweet comments and support. It really helps being surrounded by a community of nurses that "get it" and can appreciate the struggles and the joy we experience.

I worked with ID clients during nursing school and at the present. It warms my heart to read stories like yours. Not everyone understands this career choice, and that's fine if they don't. But to know that their are others out there as passionate about the same career choice is a true blessing.

Loved your story. Prayers for your special little gal. I also work in this field and know this is where I will always be.


Has 3 years experience.

I absolutely loved your story. My heart is also with this population. I worked with adults with disabilities for five years before becoming a nurse and I search and apply regularly for positions working with them. That's where I so badly want to be.

I can identify with so much in your story, I got and still get all those same feelings every time I visit my past clients who I consider to be a part of my family. It's incredibly heart warming to see that others feel as I do about this very misunderstood population.

Thank you for sharing.