Things I Wish I Could Share

 

I was told this line of work would be hard. And even now, whenever I disclose my position, I’m often met with a mixture of wonder, sympathy, and often confusion. Like “why would you ever want to do that?”  And what I want to answer with is how could I not?  I’m sure the last few days, weeks, months, even years, for you have been hard. And hard seems like an understatement. People say that it gets easier. I was told that too when I started working in the ICU.

But it doesn’t really get easier. It just gets different. You adapt. You learn. You cope. You don’t move on, but you find a new normal.

When I first fell into pediatric cardiac ICU nursing, I was fresh out of nursing school. I had some idea of what I was getting into, and I knew it would be challenging, exhausting, emotional, and rewarding.  I knew that I’d be learning about many congenital heart defects I’d never heard of in nursing school which, outside of a VSD or Tetralogy of Fallot, included pretty much every other defect. I knew that I’d learn how to read an EKG, assess for pain in a tiny neonate, administer medications to a toddler, review dressing changes with teenagers, educate families on swaddling, breastfeeding, nursing, administering medications, and bathing. I knew I’d learn about post sternotomy and thoracotomy care, chest tubes, foley catheters, RA lines, PICC lines, and I knew I’d learn how to help a family become more comfortable around the equipment their child had.

I knew, but I didn’t really know.

There was so much that school didn’t prepare me for, and one of the hardest lessons I never learned there was how to help a grieving family as a grieving nurse when a patient dies.

In the last 13 years of my time working in the Cardiac ICU, I’ve had the honor and privilege of caring for hundreds of patients and their families. Sometimes only for 4 hours, and sometimes for weeks at a time. Sometimes on the day when they are welcomed Earth side, and sometimes on the day they take their last breath.

 

Every single child has made an impact on my life.

Every. Single. One. 

 

It’s important for me to share this with you because on the day when a child takes his last breath, I want you to know that no matter how long he was here or how long I’ve known you—hours, days, or years—I will always remember him. 

And now that it’s been a few days or weeks or months, here are some things I wish I could have said before you walked out of the ICU for the last time.

  1. Thank you.  Thank you for sharing your family, your child, and your heart with me. Although I was assigned to your daughter or son at probably some of the most vulnerable and excruciatingly painful times in your lives, thank you for the privilege of allowing me to care for them, emotionally and physically, and for allowing me to do my very best to compassionately care for your family.
  2. I’m sorry.  I probably did say this. In some way, shape, or form, but I feel like I need to say it again. I’m so, so sorry that this is happening to your family. “Sorry” seems so empty. It’s what everyone says. And I truly haven’t found the right words. Maybe there are no right words. My heart is breaking for you, for your loss—the loss of your hopes for your son, for the dreams your daughter shared with you, for the opportunities and experiences you will never have with your sweet baby. I’m sorry for the grief and the anguish and all the decisions you’ve had to make until now and will continue to have to make in the days and weeks to come. I’m sorry if I didn’t come across as caring or as empathetic as you needed me to be. I’m sorry for the insurance phone calls and the bills that will come and for the emotions that may come with it. I’m sorry that life will go on around you and continue to move forward, both inside and outside these walls, when you feel like you just need one more moment with your sweet babe.
  3. You and your child have touched my life and helped to shape me as a nurse and a person. There are more than a few things I’ve learned from patients and families I’ve cared for who have passed. One patient’s family taught me about unending and unwavering faith. Another family’s ability to verbalize exactly what they wanted for their child helped me to ask the questions of each family about what is important for them.  I’ve become more compassionate, more patient, gentler, and more empathetic with each of these encounters.
  4. It never gets easier. Even though I’ve been down this path with, sadly, many other families, it never gets easier. My ability to make you and your family my priority has improved, but I still grapple with the emotional toll of losing a patient. While I cannot even begin to fathom the depth of your pain, please know that this is heartbreaking for me too.
  5. I think about you and your child long after you’ve left our unit. It’s true. Days, weeks, months, and years down the road, your family and your child pop into my mind. I still think about kids who I cared for in my nursing school days. I wonder how you’re coping, how your family is, how your other children are, and if you’ve welcomed more members into your family. I wonder what your daughter would be like, or if I’d even recognize her on the street. I always hope that you’ve found peace. I hope that during the most harrowing days of your life that I provided some comfort.

I can’t say it enough; it’s been an honor and a privilege to care for your children. I know that our paths crossed by chance, and that this chapter of your life has been fraught with many unimaginable feelings and decisions. My hope is that you continue through each day and find comfort and peace in the happy memories, whether they were from hours or years of time together. I am so grateful for the blessing of meeting you and for the impact you and your family have made on my life.