Not long after finishing nursing school I decided to go back to college. So like many other dumb girls I chose my school based on a boy. Fortunately, such a dumb decision ended up working out to my favor and I eventually wised up and moved on. So I left home, no real plan in mind, but figured I would have time as I completed my generals to figure it out. Being away from home was hard, struggling with anxiety made it even harder. I nearly flunked out my first semester. Again, I wised up, drug my ass to class and started getting good grades. I also realized that I was going to have to get a better paying job than the crappy part-time jobs I had been picking up if I wanted to pay the bills and be truly independent. That left me with one choice. Finding a job in nursing. Ugh.
After my experiences with hospitals I knew that I didn’t want to do that. I also knew that my passion was with children. Lucky for me, a local home care agency was hiring for pediatric home care nurses. I still remember the case manager trying to steer me toward working in a hospital for my first few years to build experience, but being desperate enough for help they hired me anyway.
You see, something I didn’t realize about home care nursing is that essentially you are on your own. Not all, but some of the clients in home care have serious medical conditions that can be life threatening or have shortened life expectancies. Some of the families can only be described as dysfunctional. If something happens, it’s just you. If you see something, it’s just you. If something needs to be said, it’s just you.
I had the pleasure of working with my first family for a couple of years. They were wonderful and it was amazing to watch this new baby grow over those years. We developed a great relationship and for a number of years after nursing stopped I still babysat now and again. I still can’t believe that if life had been different for him then he would be driving and dating and all of those other things that teenage boys do. You see, this was my first experience working with a patient with severe developmental delays, growing up not able to live out the dreams his parents once had for him as he grew in his mother’s womb. This was my first experience working within a family where everyone learned to grieve this and deal with this in their own way. They did it well and showed me what it can look like to love a child for who is his and not what he isn’t or “can’t”. I am lucky for that as it gave me the chance to ease into this process and prepare me for the rest of my career. Sadly, what I see now is a family who did not have the support they needed in their school, community and medical systems. With all I have learned since then I fear that there were many other opportunities they should have had to maximize their son’s potential that no one knew to give them and that they had no way of knowing how to ask for. Something my experience (oh how I should have listened) has allowed me to bring to families I now come in contact with in the community as a mother.
After nursing care ended at that home I was assigned to a new home. It became very quickly evident that this was a house that was difficult to staff and that no one really stayed at for too long. Lucky for them I was naive and never understood I could refuse to go back- that I had options other than quitting the company. So for years I worked in a house that was disgusting, where at one point I had to be creative and figure out how to let medical equipment dry without rodents leaving droppings on them. I worked in a house where I feared I would arrive to find everyone asleep and my client dead in his bed because his parents had been too tired to give him his medications the day before or hook up his heart rate and oxygen monitors before going to bed. I worked in a house where this white collar, college educated, middle class family had let this child tear them apart rather than bring them together. You see, it seems as if those are your two choices when the unexpected happens to you. You pull together and let it build you stronger and closer as a family or you let it tear you up, bring up blame, grief, anger, and disappointment that you use against each other. I worked at a home where I wanted to quit every day, EVERY day, but couldn’t because I knew that at least when I was there that boy was taken care of. I worked at a home where I came to work and had to pretend everything was fine when I knew that child protection services (CPS) had paid a visit to the home the day before because I had called them. Where it was known by all who had called them. Unfortunately, this was not their first time (and I suspect not their last) and they knew that when CPS called to set up a visit appointment that things better look good. And they always did, for that day. No proof. No help. Nothing to be done. It was frustrating and heartbreaking like nothing I had ever experienced. More drama arose and eventually I realized that I had done all that I could and that I could not save him on my own and that in trying to do this I had started to neglect myself and my health. So I left. I don’t know what ever happened to that little boy. I may never know. I still think about him from time to time.
And the truth is: I was an asshole. I judged them rather than tried to help them. Maybe there wasn’t anything I could have done. But I do know I was guilty of judging people everyday. Shit, some days I still do. Guilty of labeling someone a bitch. Of assuming that you spent all your money on fake nails and then use “my hard earned money” for food stamps to feed your family. Of assuming that while you are smiling with your meth teeth at your kids I was paying for all of you to live. I didn’t know that you were “bitchy” because you had just lost your job. That your child’s nurse called in sick and that was the last straw for your boss- you’re “unreliable”. I never stopped to realize that people on assistance still get gifts, still deserve nice things. That a day at the “spa” was given to you by your mother because she knows how much of your time is given to the kids and trying to better your family’s situation. I never thought that you had overcome an addiction because you had been self medicating your undiagnosed bi-polar disorder. Now you’re clean and on meds and doing your absolute best to raise your kids. You’ve even gone back to school. I didn’t know your story and I never bothered to stop and consider it.
I’ve worked in many other homes on more short term basis and it was always the same: having a child with special needs and developmental delays either brought them together or tore them apart. And even after seeing all of these different families and different situations I cannot begin to say I can truly understand what it must be like. But I’m trying now. It took my next job to teach me how. I’m trying to understand what it must be like to give up on the prenatal dreams you had for your baby, to change them to simple things like having the ability to communicate, to walk, to eat on his/her own while you watch your other children grow & accomplish; while you watch other parents take all of these milestones for granted. I can’t imagine what it is like to let strangers into your home; to work beside them everyday and worry about them caring for your child when you are out; worry about them judging you & your family; worry about them talking about you to others; worry about them stealing or snooping through your things (because it happens). I can’t imagine what it’s like to ask for, beg for, scream for help and not be able to get the answers but maybe someone can look into after you sit on hold for the next hour and complete these 20 forms. I can’t imagine what it’s like to have to balance all of this with a job where you worry every month about being fired because of the time you had to take off to attend an appointment, to cover for a lack of nursing, to be present for yet another hospitalization or surgery knowing that IF you qualify for FMLA you only have so many weeks and then what? I can’t imagine what it’s like to feel the weight of a strangers gaze when you leave the house, of unkind people pointing or whispering, of people judging you because this life hasn’t allowed for a job or has gotten you fired from it and your food stamps have put you in a category that you don’t want to be in but have no other options. I can’t imagine watching your child get sick and worrying it will be for the “last time”. I can’t imagine having to comfort your child over and over again, surgery after surgery and they don’t or can’t understand why this keeps happening. I can’t imagine how to balance joy and sorrow every day; feeling the weight of beating the odds yet waiting for the last shoe to drop. I can’t imagine this and that is just the tip of the iceberg. But I’m still trying. Are you?