To All the Nurses Who Loved Our Will,
There are not words powerful enough to adequately thank you. I learned quickly that you - Pediatric ICU nurses - are a very special kind of nurse, a very special kind of person. I have tried to describe to people out here what you do everyday and my words always fail. An outsider can’t begin to understand the magnitude of your influence or importance of what you do until they have seen it in action. Your daily reality is foreign to most of us and even once we’ve had a glimpse into your world we cannot fully understand or appreciate all that you do for us and for our children. We watched you care for our baby in a way we could not. We watched you monitor Will’s numbers, administer medications, draw blood, send samples, manage IV drips and change dressings. We watched you bathe him, change his diapers and keep him warm. We watched you respond, rescue and resuscitate. We watched you advocate for him and speak up when you knew something was wrong. We watched you wait until 4pm to eat lunch because taking care of Will was more important than taking care of yourself. We watched as you put off pumping milk for your own baby another hour, another two hours, because Will needed your attention. We watched you create the most positive and peaceful environment possible for our little boy. We watched you play Disney movies and lullabies so his room full of monitors and beeping sounded a little more like home. We watched you organize his supplies, label his equipment and make his room comfortable. We watched you obsessively clean, sanitize, sterilize and put on and take off more yellow gowns and purple gloves than we could count to protect our little boy. Even when you may have felt unnoticed or unappreciated, we watched you give your very best to our baby.
We not only watched you take care of our son, but you took care of us too. You answered all of my questions. I know I had a lot ("a lot" being an extreme understatement), I know I asked the same questions over and over again and I know I asked questions that didn't always have an answer. Thank you for being patient. Thank you for making me feel as if Will was all that mattered in the world and answering my questions about him was your sole task for the day. I know you had a million things to do and plenty of other tasks to take care of, but you never rushed or made me feel like my questions didn’t matter. Thank you being there when the days and nights were hard. Thank you for showing compassion and empathy when we cried. Thank you for stopping me to pray when we got unexpected bad news. Thank you for the hugs. Thank you for listening when we were frustrated or mad or scared. Thank you for teaching us to take care of Will. Thank you for being patient when it took me forever to help you change trach ties or help with his bath. You could have done it twice as fast by yourself but you took the time to teach and encourage, giving me much needed confidence. Thank you for letting us hold him. We know it took a lot of effort to get him out of his bed and into our arms but you never said no or acted annoyed when we asked. Thank you for making those moments with him a priority because now they are some of our most cherished memories. Thank you for bending rules, sneaking pictures and celebrating with us. Thank you for making much of little victories. Thank you for helping us interpret test results and blood work and labs. Thank you for your opinions, thoughts and wisdom. You may not realize that your words helped us through the most difficult times. To you, it may have just been sharing an experience or a casual conversation, but to us it was advice that we valued and wisdom that helped us have hope and make decisions. Thank you for being positive. Thank you for spending time away from your children to take care of mine. Thank you for being invested. Thank you for working even when you didn't feel good. I know there were days when you were worried about something going on at home or tired from being up with your own baby the night before. Thank you for being there for us even when you needed someone to be there for you. You not only take care of sick children every day, but you take care of their parents too.
I told many of you that I could never do your job. I said that because I am in awe of what you do and I know I don't have the capacity to do any of it myself. You come to work every day for a twelve hour shift that lasts way longer than twelve hours. You wake up early, you go home late, you work all day or all night. You work on Christmas and New Years and sacrifice time away from your family to be with ours. You take care of children who are sick, children who are abused and children who are dying. You take care of children who don’t have someone to take care of them. I’m sure you don’t stop thinking about them when you go home. Actually, I know you don’t because I know that you called to check on Will even on your day off. I’m sure at times you feel under appreciated or taken for granted but I can assure you that you are so valued because it takes an extremely special person to do what you do every day. I only saw a small part of your job, I only saw how you took care of my baby, but I know you do so much more than my eyes could see. Words fail to express the appreciation you deserve, but I want you to know that we are grateful.
We are grateful that Will knew you. We are grateful that we could trust you when we weren’t there, that you gave Will a chance at life and that you loved him. That is what we are most grateful for, that you loved our baby. You comforted him when he was upset and spent countless hours trying to help him sleep. You stopped by to check on him even on days he wasn’t “your patient.” You teared up when he smiled. You talked to him, smiled at him, dressed him, played with him and changed countless diapers. You were excited to see him, genuinely excited. I can’t tell you how happy it made me when you said how sweet, cute, handsome, strong or amazing my boy was and the best part is that I knew you really meant it. I was so proud when you requested to take care of him and when you were so happy that he was your patient for the day or night. I know it wasn’t easy being in his room. You could barely leave between keeping up with dialysis, feedings, medications and therapies. But you still wanted to take care of him.
I know that when Will passed away you were sad too. I know that when you got the news it was hard to go on with your day without thinking about him. I know that when I asked, “Is Will trying to die and we aren’t letting him” you didn’t want to answer me. You knew I was going to ask it, you knew what the answer was and you were heartbroken just like me. You were graceful, caring and compassionate as we watched him take his last breath. You comforted us as we walked to our car to drive home without our baby. You somehow made me smile as I held my son, waiting for him to die. You cried with us, not always in front of us, but I knew that you were grieving with us. You somehow knew exactly what to say. You had to endure his loss in a whole different way than us. You have to walk by “Will’s room” every day you go to work. Maybe by now you have even taken care of another child staying in his room. I don’t know how you do it. I know he is not the only child you have gotten attached to. I know you have held children as they took their last breath and I know you have loved countless children the same way you loved mine. I know you see a lot of them get better - you saw Caroline get better - and I know there are joyful and rewarding parts of your job, but you also experience the sadness and loss and you keep going back. Thank you for going back. Thank you for enduring the heartbreak, devastation, sickness and pain present in the PICU every day and every night. You have studied, trained and learned how to be a nurse, but you are so much more than what you learned in order to earn your degree. I don’t say that to diminish your knowledge in any way, I am amazed at how much you know about medicine and science and the human body, how many questions you can answer and how much knowledge you possess. I say that to emphasize how much of being a nurse comes from you, your personality, your experience, your compassion, your heart. There is no training that can teach you that part. You do so much more than your job requires every day and I will always be grateful that you are part of Will’s life. Thank you for taking care of him, thank you for fighting with him, thank you for loving him.
With much gratitude and thankfulness,
These handprints are from the day of Will's passing. His nurse and the hospital Chaplin helped us get his hand prints and foot prints, along with his Caroline's, to keep as a sweet memory of our little boy. I am so thankful for these little hands and all the people who took care of them.
Our mission is to glorify God by supporting children undergoing life-saving heart treatment and creating a caring community for their families in honor of our son, Will.
My name is Courtney Hughes and I am Will's mommy. I am happy that you are here to read Will's story and make a difference with us!