The thrum of the helicopter landing overhead kept me awake, but even without it sleep would have remained elusive. I had just been thrown into a new and dizzying world. The only thing I knew was that the last normal day had been yesterday. How did my nine-year-old daughter find herself admitted to the hospital on Memorial Day weekend? How did she find herself with a chronic disease that was neither preventable nor curable?
I'd recently noticed that my daughter had lost weight and had an intense thirst. One evening when she got up from a movie three times to urinate, I grew more concerned and tested her blood sugar with a glucose meter I still had from when I had gestational diabetes. I called our pediatrician, who told me to drive her to the ED immediately. The diagnosis of type 1 diabetes came swiftly once test results came back.
After her diagnosis, a swarm of people overwhelmed the modest ED room, connecting an IV, heart monitor, and blood pressure cuff, a burst of activity that frightened the little girl on a bed. But then, amid all the activity, a particular nurse emerged. Not a nurse to take vitals or draw blood, but a nurse dedicated solely to speaking with these little patients. In a world that discounts the cognitive ability of children, she knelt down, eye level to a child, and explained what was happening, who everyone was, and what they needed to do. She asked questions like "This arm or that arm?" and "Do you want me to count down?" that would allow a girl, her life forever changed, to feel a sense of control and choice. She didn't leave until the room was quiet, then brought toys and exited with a smile. In what was likely an all-too-familiar scene to a pediatric ED nurse, she brought calm to families and children who would forever remember this day.
Once we'd been admitted for the weekend, another nurse educated us on this alien world we must now be initiated into. Answering questions from my daughter, my husband, and me, she got to know us while somehow making this new way of living fathomable. Meals, exercise, strategies for school and sick days, dosage calculations-a literal binder of training to go through. She located donations for just these occasions (no easy feat on a holiday weekend). The emotional pull for a child of a filled Frozen-themed book bag may seem insignificant but seeing two eyes sparkle in the midst of monitors and machines was immensely moving.
There is a palpable depth of emotions as you walk past other families admitted to a children's hospital. Regardless of the unit or reason for admission, a shared sense of worry, sadness, loss of normalcy, and grief for what has or may come passes unvocalized as you walk the halls, common areas, and elevators. There is usually no exchange of pleasantries, only a nod of the head from those consumed with what brought them to this moment.
Your child is healthy, until one day they're not. Nothing prepares you for living what you think only happens to other people. Your life is forever changed.
Sleeping on a converted loveseat by the window in our assigned room, listening to the helicopters arriving and departing, I found myself thinking of what those families must be going through, and counted my blessings. The swooshing and orbiting marked the passage of time. Nurses came and went, checking rates and levels, but also offering smiles and encouragement.
Before we were discharged, the nurses told me that children admitted with this diagnosis usually arrive on life flights because they aren't diagnosed until they are critically ill. The symptoms are silent and often overlooked or misdiagnosed until their bodies start shutting down. We are the lucky ones in figuring it out early, before becoming passengers on the flight no one wants.
Ready for discharge, we'd gathered everything together, and as we prepared to leave her room, my daughter dashed back to the whiteboard where staff names and shifts were written. Under the "Things I should know" section, she wrote, "I'll miss you, nurses (and doctors)."
That was five years ago.
Nurses have yet to let us down; they eased us into the new normal that is now just normal. We see an NP instead of a physician. Our daughter's NP advocates for her, informs her of research studies, answers every question, and I have no doubt is on her side every single step of every single day.
Nurses do the big things, but I am thankful for all the small things: for bringing peace in the eye of the storm, for knowing the difference a book bag can make, for providing us coordinates when we felt lost, for helping us connect to research studies, for filling out form after form after form, for making us laugh-for doing the things that we remember, the things that last years later.
Thank you.