“How is Cora doing?” is a typical question we get after our 4 year old daughter has had a seizure. It is a socially acceptable and appropriate question to ask a parent who has a medically complex kid. I wish I could say as the parent of that medically complex kid that the answer is easy or straightforward. It isn’t – just like her illness. The answer has layers and is complicated. An easy response would be ‘thanks, she is stable.” In recent years, Cora has rebounded well from her seizures and the initial reply can seem straightforward. However, there are usually side effects that impact the true picture of how Cora is doing, and they tend to extend well beyond the seizure itself. Is she on an antibiotic for an infection that caused the seizure which means an unintended side effect? Is she not sleeping or behaviorally acting out due to the bridge medicine she has to be on post seizure? Is she walking unstable and not communicating at baseline due to the influx of heavy meds given to stop the seizure? These are just a few additional questions we mentally run through when the initial “How is Cora doing?” question is asked.
There are also contextual questions we must ask ourselves as parents and caregivers when answering this question from someone. For instance, who is asking the question? What do they know of Cora and her background? What type of environment are we in for us to share details? What type of relationship do we have to share intimate facts? Does the person want to hear the truth or are they just being socially appropriate in asking? Are we in the mood or mental space to be vulnerable and share the reality of the situation?
If someone asks a follow up question about ‘How are you doing?” Well, the answer is usually not as rosy or cheerful. How am I, you may ask? I am overwhelmed, fearful, sleep deprived, anxious and grateful. Overwhelmed with putting the pieces of life prior to seizure back together and with various follow ups that are sure to ensue; like, medical appointments, pharmacy visits for new medications, schedule adjustments, work that was put off, household chores, etc… I am fearful it is going to happen again; the Dravet purple monster is going to show its ugly face and try to steal our daughter and our joy from us. The Dravet monster can strike at any moment, day or night, home or in public, months without seizures or back-to-back. It is amazing we as her caregivers and her supporters are even functional at all due to the constant fear of this unknown predator that is always lurking. I am sleep deprived…oh, so very sleep deprived. If she is sick or we are post seizure, there are sleepless nights of co-sleeping, worry, and unease. If she was hospitalized, there are nights of medical staff drop-ins, machines beeping, unrest, loneliness, and uncomfortable bedding options. Even during her ‘healthy times and seizure-free streaks, there is sleep deprivation because the chronic post traumatic symptoms start to show themselves and cause an inability to fall asleep or stay asleep.
This leads me to expand on how I feel anxious. This touches every part of our life. We physically feel it like a vice on our head, weight on our shoulders, lump in our throat or a rock in our bellies. We may feel it as panic where there’s cold and hot flashes, stomach uneasiness, brain fog, or an inability to move. We emotionally experience it by being caught off guard with sudden tearfulness or being irritable and angry over small things because we can’t process anything else. We also could be aloof or unresponsive. We spiritually feel it because we don’t understand the purpose for Cora’s suffering, and it is hard to live in a world where any god would allow for this to happen to an innocent child. We have difficulty in our relationships because the only people who truly understand what we are going through are on the sinking ship trying to find any way to minimize the barrage of water that keeps coming. This means that some days there is very little time and energy to focus on anything or anyone else but Cora.
Then, I dare say we do feel grateful, and that is because we are. We are grateful each morning to hear Cora laugh and greet us. We are grateful each time she opens her eyes, takes a breath and touches our face after coming out of a seizure. Cora is an amazing soul who touches people in beautiful ways through her embraces and by being so brave, loving, empathetic, honest, and funny. We get to be her guardians and help her navigate this life – the good and the bad. We are her witnesses for this journey and will help share her story. She teaches us so many lessons and helps us try to remember what is important in life which is easy to forget.
So when someone asks “How is Cora doing?” Well, it’s complicated.
