Raising a child with special needs is a challenge. To help deal with this challenge, there are many heroes who come forward and rise to the occasion, making sure not only is the child supported but the family is well. People in person generally rise faster than organizations on the phone or by email. And there are many heroes from the medical field, social services, friends and family.
However, it has been my experience that there are days where the obstacles just happen. I try to remind myself that these rarely happen intentionally, and are more likely to be caused by some combination of incompetence, forgetfulness, and simple human error.
So that is the prelude to the frustration of trying to get a UTI test for my daughter. My daughter Eva is the survivor of an encephalitis and requires 24-hour nursing care. She is lying, and suffers from cerebral palsy and uses a tracheostomy for breathing support. She is the definition of immunocompromised and he vulnerable person.
Having suspected a UTI, her doctor, one of the heroes, delivered a specimen cup so that we could collect urine via a catheter to confirm the suspected infection. The nurse was able to collect the sample in the early afternoon so I quickly left campus after making arrangements for colleagues to cover my classes, another set of heroes.
I arrived with my sample at the first LabCorp nearby at 2:15 but found the door locked, even though it was clearly marked on the door that the facility closed at 2:30. After calling my wife to vent a little frustration, I found another LabCorp that was further away but would be open until 3:30. Arriving in the parking lot at 3:15 and with help from a nice mall attendant I found the LabCorp at 2:20, again with the door locked. However, this time I could see the worker in an office room ignoring my knock and going into hiding. The attendance saw as well.
So, after about an hour of driving and two attempts to submit the urine sample for testing at two different LabCorp offices, we had to dump the sample. This implies that not only have we wasted an hour of my time, but we have to again subject my daughter to a catheter which is uncomfortable at best and a potential source of infection itself at worst.
I try to tell myself that no one is intentionally trying to make this harder than it needs to be. And sure, sometimes people need to leave early. But the fact that this happened twice in the same 60 minutes and that I could see a person hiding from their responsibility … Well, this was going from unfair and into the wrong category.
I would bet that every family has a frustrating day, but every family with a vulnerable family member in need of special arrangements has more and more challenging events like the one I described today.
So, I want to leave you with a motivation to stay a little later, to reach a little further, try a little harder, especially if you’re trying to work with a population that’s in greater need than the average. It doesn’t really take much to be a hero, sometimes it’s just showing up and staying and completing your shift — basically, just doing your job.