I have several distinct memories of observing parents whose kids had nurses in the waiting room of a doctor’s office. Sometimes we would get caught on the elevator with them, other times they would make their grand entrance into the waiting room- a parent or two followed by a kid in a wheelchair with a person in scrubs in tow. Other parents would join me in watching this medical circus out of the corner of our eye as the nurse and parent managed several beeping machines and we gave a silent prayer of thinks that our kids weren’t that bad.
When the Baby got the LGS diagnosis back in April, a friend texted me and told me that we would qualify for private duty nursing, which is having a nurse in your home for your kid. I chewed on that for a few days. Being that I’m already extremely introverted and we were in the midst of a quarantine where I was literally my extrovert’s only friend, the idea of having another person in my home, a stranger no less, made me extremely uncomfortable.
If parenting has been anything for Alex and I, it has been a crash course in learning to manage our expectations. Had Alex and I birthed a (neurotypical) biological baby, with its exceptionally large head and proclivity to canker sores, then we could have used the baby sign language cards I purchased that collected dust on a shelf until I sold them in defeat. During the Kid’s 5th grade year, which was our hardest year, in a meeting with school staff, they asked us what our future plans were for him. Alex and I looked at each other and said, “Well…we want him to graduate from high school and have a job that he likes.” Everyone shifted uncomfortably, as the correct answer should have been that we wanted him to go to Harvard and become the country’s top lawyer or something. But it’s the truth. We take things a day at time over here, not because we don’t hope for our kids, but because we know that soaring expectations place a tremendous burden of stress on everyone, us included.
So, we manage our expectations. This epilepsy diagnosis has been no different. When we pull the Baby out of his giant twin sized crib in the morning, we don’t know if he’ll have a good seizure day where he’s engaged and exploring or yet another day that epilepsy will steal from us, like the soul-sucking awful disease that it is.
So, we decided to try nursing. Perhaps nursing would help us feel less unmoored in this tumultuous ocean of the unknown.
And it has.
We’ve had several people in and out of our house over the last several months. Private duty nursing is notoriously unreliable until you can find a good, steady person. Our good, steady person came in the form of a tall, regal Jamaican woman who uses the word ‘posh’ and cares deeply for our family. We had a hilarious conversation at dinner where she and I tried to explain to the Kid that Jamaicans spoke English.
“No, I know, but what language do you speak?”
“The Kid, she speaks ENGLISH. What do you mean?”
“No, like what language do you learn in school?”
“ENGLISH, The Kid. We speak English.”
While the main job of the nurse is to take care of The Baby, they can also do some basic household tasks related to his care. I remember the first time I came back from a few hours of work and the nurse had done The Baby’s laundry and had it nicely folded for me on the coffee table. I almost wept with joy.
More than that, though, I can leave and the weight of The Baby’s medical care, at least for a moment, is lifted. I can go to work and not worry about his oxygen dropping or him aspirating on a too-thin bottle with a good-intentioned babysitter. I can go to Target and shop without worrying about how many seizures he’s having or if he’s safe. Even when I leave him in the very capable and willing hands of my parents, I am always secretly worried that they will have to deal with some new, unknown medical problem that presented itself as soon as we drive out of the driveway. “Hi honey. How’s Mexico? Oh, The Baby’s fine but he’s grown a second head. Do you think that warrants a call to the doctor?” I don’t think I realized how much mental space he takes up, even when I’m not around him.
Nursing allows me to take a mental break.
Truthfully, the Baby’s medical care feels like a part-time job in itself. Between coordinating pharmacy deliveries and talking to doctors and his many therapists and ordering medical supplies, there have been days where I have very little energy left to just be his mom and play and sing and enjoy him.
Nursing has allowed me the space to be a mom. Instead of expending my limited energy on bottles and laundry, I can actually have fun spending time with him because someone else is taking care of those life-draining minutiae that plagues every special needs parent. I can take him on walks and we stop to pat his favorite bush and giggle that he ignores all of the other neighborhood bushes.
I’ve joked with the nurses about them being my sister wives minus the sexual competition and petty jealousies. They help carry the heavy load we’ve acquired. It’s taking a village and they are part of that village.
I think our initial reluctance to nursing came from a couple different places. Alex and I are both introverted and we worried about having to make nice with a stranger in our own home. We had heard that the process was lengthy and frustrating. With COVID, we were scared about letting someone in to be with The Baby.
But my main holdup was that I was resistant to the idea that The Baby had become one of those kids who was that bad. In my heart of hearts, I was hoping that we’d discover he responded miraculously to the first medicine we tried but that hasn’t happened yet and, according to the LGS facebook group that I’m in, it may never happen. We might get seizure control and we might not. He may continue to make progress on developmental milestones and he may not. This whole process has been one grieving mess after another and before I could accept that we needed a nurse, I had to accept that my kid may possibly be profoundly disabled and there’s not one thing I can do about it.
Gosh, that still hurts to say.
Sure, we may have a kid who walks eventually and maybe potty trains. We might also have a kid who has too many seizures to walk safely and is wheelchair bound. We might have to deal with lifts and bath seats and wheelchair accessible vehicles and and and. We don’t know.
We don’t know.
So, for now, I’m enjoying my sister wife and when we go out in public, it’s like we’re walking in slow motion with the wind blowing in our hair and other parents are staring and saying thankful prayers that their kid isn’t that bad.
And that’s okay.
For today, I’m okay with that.