My dying student taught me how to say goodby....
I work in a medium sized HS in New England and while my population is relatively small, we have had some kids with terrible illnesses. At one point, there was support group that ran for kids who were in school and dealing with chronic illness. These ranged from cancer to bowel issues to progressive muscle deterioration. This group allowed for a safe and trusting environment, and everyone in the group "got' what it was like to be different.
I have had the privilege to be a school nurse for almost 20 years. When I write that, it kind of gives me a jolt, because it seems like yesterday when I started. I kind of stumbled into the job but in the process, I have found my passion. In the beginning, I was completely computer illiterate and never dreamed I would use my smart phone and iPad throughout the day. My first year had 15 kids on stimulant medication, today I give no daily doses as most are on long acting meds and do not need a boost at noontime. Diabetics were few and far between, today, they run circles around me with their pumps and the ability to very independently self-manage in the school setting.
But the things I have seen over the years have grounded me to my core. My interview (with 9 people) was mind boggling but touched on confidentiality - long before HIPAA was part of our everyday language. A student had died the previous year from cancer and given this is a small rural town; they wanted be sure that I understood I would be asked questions that I could not answer, a lot! I know I secretly hoped that it would never happen again but I was soon proved wrong. We have had a number of critically ill students (and subsequent deaths) in our district: cancer, progressive neuromuscular wasting diseases, psychiatric illness...the list is endless.
What I have found is that in my role, I have the ability to advocate for these kids and their families. My goal is for a student to have as much of a normal life they can, while dealing with an illness or injury that is truly life changing.
Over the course of time, there was a core group of students who were dealing with chronic illness. Some were very obvious (wheelchair bound) but some were invisible (Crohn's Disease). The guidance counselor and I started a support group that ran for a number of years until the group dynamic ran its course, due to death, students moving or graduating. These kids got together because they understood what it was like to deal with a chronic illness in school. They knew that others in the group "got it". Trust was learned and trust was earned. "Joe" who had lymphedema trusted enough to show it to the group.
"Sally", as she lay dying from a brain tumor kept a sense of humor and made us face the fact she was dying, and in doing so, taught us how to say goodbye. She kept it real. She was dying and she and her family knew, and they shared her experience with us. Each of us in the group had the opportunity (and if their parent wanted), to spend a few minutes with her. As it turned out , she cheered up the rest of group. She was not afraid to talk about being sick and was comforted by the fact her friends did not shun her.
The kids kept each other honest and had no qualms on calling each other out for statements that just did not ring true. We took some great field trips into a major city so they could experience going to that city without having to go to the Children's Hospital, where many of them had or were undergoing treatment. We met for dinner at local diners that could accommodate a wheelchair, took in a major league baseball game, and went boating. No obstacle was too great for these kids to try especially when they had much bigger issues with their health.
One of the beautiful things about these kids is that they gave back. One year they raised money for Make-A-Wish. Some had received wishes and understood how much it meant to them. Another year they met with medical students at a prestigious Ivy League medical school and told them what it was like to be different, to have to struggle just to get through the day, let alone go home and do homework. I saw medical students with tears in their eyes when they listened to the struggle "Fred" had when teachers forgot that he could not lift his hand out to pick a paper dropped on the desk due to his condition. Or when "Sarah" told them how invisible she felt with her Crohn's diagnosis, because people could not see it. In this informal setting, without the bustle of trying to get an H & P in the busy inpatient setting, the medical students were able to see the child beyond the diagnosis and hear what it was like to live with chronic disease.
The group ran its course as the natural dynamic that formed it, evolved and changed. We lost two students to death, one to relocation and the rest to graduation. I have the privilege to be in touch with some of them in their adult lives. One in particular is now enjoying a social life never experienced in high school, because of social media. The ability to type has allowed for communication with classmates and friends that never quite got past the barrier of a wheelchair while a student in school. This has also allowed another one to work on her addiction issues. I know that sounds crazy but she has learned to reach out and ask for support from some of those friends. And they are there for her, and I am privileged to be one of them, supporting her on her road to recovery.
Some of these relationships have transcended school nurse/student relationship into real friendships as they are all now in their mid 20's. The sibling of a group member (also a former student) has a child with a brain tumor. She has a supportive and loving family but has said to me "You are likea mom, without all the crap that goes into a daughter/mom relationship"! I consider that huge compliment and I watch in awe as she struggles with two kids, one very ill and still manages to have a smile and care and support her sister as well. Recently I heard from a group member that a year into her new marriage, she is buying a house and expecting her first child. That she is here today is a miracle as she had not one but two major life illnesses. Others I have lost track of but they often pop into my thoughts throughout the course of the school year.
Will a group like this run again? I do not know, but what I do know is that I am a far richer person and nurse for having been a part of it. My nursing practice has changed and evolved as well. I am blessed to have been in my role a school nurse when they were all facing these challenges with grace, dignity and courage.Last edit by Joe V on Feb 1, '13
About NutmeggeRN, BSN, RN
nhnursie lives in a rural New England town.
NutmeggeRN has '30+' year(s) of experience and specializes in 'kids'. From 'New England'; Joined Dec '11; Posts: 3,007; Likes: 6,551.Feb 1, '13AWESOME!!! I wish that there were programs like yours in EVERY school!!! Thank you for sharing your nursing gift!Feb 2, '13Wonderful story! I wish I will also have a beautiful story to tell after how many years of being a nurse! You're very inspiringFeb 2, '13It certainly does sound like you found your passion - and your niche. I know your life is enriched by knowing and nurturing these kids, but thank you for helping to give them a richer and more normal life in the face of illness, as well as a sense of value and belonging. The goal and reward of every nurse, I think. God Bless You.
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