They are the sturdy, ready ones- unnoticed unless there is a problem. The rebar in the concrete bridge. The brake beneath the elevator. Unthanked though they bear up the skyscrapers.
They are the ones we hope we will never need. The spare tire in the trunk. The automatic activation device on the reserve parachute. The hidden accelerometer ready to deploy the airbag.
Expected to act with the efficiency and precision of machines, yet willing to give unselfishly of their hearts to their charges. Live long enough, and you’ll pass through their capable hands at least once or twice. They are home care nurses, and they have an often impossible job.
This blog has often expressed the underlying tension of life with home care nursing: it is a fundamentally transactional relationship that cannot be simply professional and transactional in practice if it is to be truly effective. Despite its many contradictions and hardships, it is our access to skilled, professional, and trustworthy nurses that has allowed John and I to sleep peacefully at night, to continue working by day, to send Jack to preschool, and to continue to work when he needed to stay home sick. Nursing is the oil that has allowed the complex machinery of our lives to chug. Our household has thrived due to our nurses. Without them, all of our plans would have ground to a halt a long time ago.
It’s not just logistical; Jack’s many nurses have played major roles in helping Jack learn to self-advocate and express his needs, to become potty trained, to read, to dress himself, to gain mobility. We have always shared our hopes and dreams for Jack with his care team, and they have always worked to help him meet his goals- work that goes far beyond the dosing, monitoring, administering of feeds, and operation of equipment that is detailed in Jack’s plan of care document. And I daresay that our lives have been enriched too as we’ve met so many people from so many walks of life. We’ve found ourselves learning about growing up in Cameroon, Sierra Leone, Guyana, about experiences overseas in the military, about life as an American Muslim, about working two jobs to finish nursing degrees, and more.
It is hard to say goodbye to these folks. It’s also a little scary to make the decision to lessen the safety net now that Jack is proving himself fairly hardy now that the trach is out.
On New Year’s eve, as we awaited the 10:30pm arrival of the night nurse for the last time, John and I reflected on one of the special joys of parenting- watching your children grow into their own idiosyncrasies, which (as John put it) is a bit like seeing yourself in a warped mirror. Yet, with Jack, it is often more like looking through a kaleidoscope- we see sparkles and flecks of so many people in his turns of phrase, his gestures, his developing sense of humor.
He likes to pack things up carefully and lug a lot of bags with him. When he was just 2, he used to hunch at the table drawing an endless pseudo-writing sentence (we posited that he was charting). This must have been what it was like when all the adults of a small community raised a child, rather than just two parents. Though in future years he may not remember the faces of all the people whom he has loved in his early life, these little fingerprints on his personality will always be woven into the fabric.
We saw this powerfully this week when we dropped off several crates and boxes of supplies that we no longer need to Nurses ‘N Kids. We had not visited NNK for some time, and we were very thrilled to be able to show Jack’s progress to the team there. Though Jack professed to remembering little about Nurses ‘N Kids, he caught a glimpse of a few favorite nurses and teachers from his earlier days and melted into their arms, a flood of memories accompanying us on the drive back home. It was a joy to see his pride in his own accomplishments.
While John and I look forward to more freedom over our schedules in the coming weeks, we’d be remiss if we did not pause on this new year’s day to think about our nursing team and to thank them all.
So, I’d like to toast to these home care nurses, some of whom entered our lives for just a short while, and who have come and gone, and others who are with us still. Thanks for being the guides along the path for Jack. Thanks for being the structure beneath the ediface, the watchful eyes, the problem solvers, shields against emergency: Esther, Sherry, Jay, Emmanuel, Pat, Carol, Mohammad, Melanie, Sherri, Michelle, Haja, Barb, Flora, Nicole, Peggy, Robert, Kelly, Anita, Francesca, Michelle, Grace, Alpha, Susan, Kim, Tanya, Amanda… and perhaps a few others, too.