Rare Disease Mom Pays Tribute to Nurses

National Nurses Week begins each year on May 6th and ends on May 12th, Florence Nightingale’s birthday.

Think about it… every time you visit a doctor’s office or hospital, you see a nurse. If you happen to be a patient in a hospital on a holiday, there will be nurses there to take care of you. If you have trouble understanding what the doctor is telling you, a nurse will clarify it for you. Now, think about how many times you must visit doctor’s offices and hospitals if a family member happens to have a complicated rare disease.

My daughter Kelley had numerous hospitalizations during her life due to her rare disease. In fact, I would be hard pressed at this point to count how many times she was a hospital patient or how many times nurses visited our home to help us with her care. As I think back about the course of her life, I know we wouldn’t have made it through many situations without the help of the nursing profession.

It was always the nurses who spent the time to listen to her concerns and call the doctors on her behalf. They listened to me when Kelley was in the hospital and called me to report on what was happening when I wasn’t able to be there. They are the people who taught me how to use suction equipment, to handle feeding tubes, and to give her intravenous medications at home.
We often take nurses for granted. I’ve seen them working long after their shift has ended, wanting to be sure that they have done all they could for their patients before leaving. When patients are in crisis, nurses stay with them, ignoring growling stomachs, full bladders, aching backs and painful feet in favor of doing what is necessary for the patients.
Sure, once in awhile a nurse having a rough day might make a snap remark, but that is something we can overlook, in favor of those who were first in line for us in the emergency department.

We need to remember that nurses put their own emotional needs on hold while caring for us and our loved ones.

A few of the incidents I’ll always remember include the time when Kelley first walked again after 10 months, and one of the nurses put her arm around me, as we both had happy tears in our eyes; the nurses in the Emergency Department that we visited most often, taking one look at Kelley when we walked through the door, and immediately getting her to a bed; the angels of mercy who took care of her and kept her alive during her med-flight to the medical center; the nurse who called around to every floor in a large hospital trying to find the only kind of nourishment Kelley could tolerate so she would be able to have something after waiting for many hours; the nurse in the recovery room who figured out that, due to her history, she needed a different pain med; the nurse who gave blankets and pillows to my husband and me in the wee small hours of the morning and sent us to get some sleep in a lounge once Kelley was settled into a bed.
I know many others have had similar experiences when a nurse made us feel like our concerns really mattered. I’m not sure I could adequately express my sincere gratitude to all of you nurses who helped us along the way, but I want you to know that you are always appreciated, and not only during Nurses Week.

About the Author: Denise Crompton and her husband Bob, raised four children, the oldest of whom, Kelley, had the rare disease of Mucolipidosis 3. The many years that they spent caring for Kelley prompted Denise to write two books. Kelley’s Journey: Facing a Rare Disease with Courage chronicles their own daughter’s experiences. Diagnosis: Rare Disease includes some of the experiences of 12 more families, and was written to help raise awareness of all that is involved in living with rare conditions.  All of Denise’s royalties go toward rare disease research. The Cromptons live in New Hampshire, where they spend their retirement years enjoying their many grandchildren, while still reaching out to help families with rare diseases.


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