Celebrating the Nurses Who Cared for Our Medically Fragile Son

news image

It’s National Nurses Week and we wanted to share a personal story of just how much nurses can change the lives of families and children with disabilities and medical needs.

This story is by Heather Oliver, CTN's Digital and Communication Specialist. Her son, Zack, was a determined, Elmo-loving little boy who was medically fragile and diagnosed with a genetic disorder and developmental needs. He passed away when he was just three years old.

We were blessed with three wonderful nurses who came to our house to provide respite for me and care for our son, Zack.

Caring for Zack’s medical needs was exhausting and overwhelming, but it was a role I loved.. Shortly after his surgery for a gastronomy tube (G-Tube) for feeding due to aspiration and a failure to gain weight, I realized that I needed some help at home. My daily (and nightly) routines changed drastically with this new equipment and with our two other boys, I was exhausted and finally admitted that I would like a nurse to come to our house to provide support.

When we were given our first nursing hours, I didn’t know what to expect. Having another person in our home during the day and sharing Zack’s care seemed very uncomfortable to me at first. But I soon came to realize what a positive difference it made in the way I could parent and even live my very busy life.

Our first nurse was more like a warm and loving grandmother who came into our lives when we needed her most. Penny not only cared for our son with special needs, but for all of us. When Zack had his nap, she and I would talk about what I was going through; the guilt in caring for my other two boys and even stress. She was a confidante and advisor, a loving friend and “mother” figure when my own mom lived over an hour away. She just made my days and weeks better. She allowed me to have time with Zack’s twin and older brother and she made me laugh during the hardest times in my life. She gave me the break from being a “caregiver” so that I could truly appreciate my time with Zack that much more. We were so sad when she left us but I’m so grateful that we still keep in touch. She always sends me a message on Zack’s birthday or on the day he died and regularly checks in on me.

When the long nights got just too much to handle, we were approved for a couple of nights a week with our first male nurse, Richard. The concept of having a man in the house at night was a bit odd at first, but then when we actually had a chance to sleep, we quickly got over the discomfort! Poor Richard took my shift on his nights from 2 - 6 a.m. when Zack just couldn’t or wouldn’t sleep. My Elmo-obsessed son loved to pinch his night nurse’s nose while he hummed the “Elmo’s World” theme song…for hours. We were so lucky to have a patient and understanding nurse who allowed us to rest so that we could face the difficult and tiring days.

When we first met Sue, we knew she was an amazing nurse who would care for our precious and fragile son, but we thought she might be too “serious” in her days with Zack. Boy, did our Zackie ever win her over! It didn’t take long for Sue to be running to see him each morning and staying to give him one last hug at the end of her shift. Zack lit up when she walked in the room, and she adored and spoiled him and his twin brother Jayden. Her bond with Zack was incredible. She was with us during his last days before he died and even helped me pack up his old unused equipment to donate, shortly after his death. In her final act of “caring” for our Zack, we asked her to be a pall bearer at his funeral and she honoured us and him in this special way.

I wanted to share what she wrote, the day Zackie died. I loved how her words captured her days caring for our determined and loving son. We will be forever grateful for her time in our lives and for the care she showed our Zack.

“I cannot think of just one favourite moment that I spent with Zackie. They were all precious and incredible. Every day he fought battles, won courageous moments and stole everyone’s heart with his infectious smile! I guess ,if I had to choose, it would be how he communicated with me. He may not of said a lot of words but his actions were quite clear. Zackie would clap his hand on my leg when he wanted to be picked up. I loved to carry him…although Mom would say, “he is a big boy, he doesn’t need to be carried.” I couldn’t resist when he glanced up at me with that incredible walnut smile. When he was hungry he would sign and walk to the cupboard where his favourite pudding was. If you didn’t respond fast enough he would get his place mat out and bring it to the table. When he didn’t like your choice of food he knew how to let you know! Pointing to the cupboard until you got the right one out! Which was vanilla pudding….of course! When he was tired he would hum the Elmo song…it was time to sit in his favourite chair and fall asleep watching Elmo. His Hero! I even sung “Row Row Row Your Boat” as I gave him his inhaler treatment for his asthma. Best of all was when he wanted a cuddle or a hug…he would put his loving arms around your neck and place his adoring cheek to the right and to the left. “Ba!…Ba!...Ba!” was his language. It meant he was having a good day! Zackie, I will miss you sooo…much! You will forever be in my thoughts and my heart! I am so blessed to have been able to share in your life.”

Our lives have been touched by so many incredible nurses who have loved our son in such a meaningful way. It is on National Nurse Week, that we honour them all and say thank you.