I think the fear of death and dying is something we all silently shoulder. It’s part of growing up; experience and maturity teaching us that we are not immortal.
And when we become parents, the weight of responsibility of keeping someone else alive, right from the get go of finding out you’re pregnant, suddenly becomes so real and overwhelming.
We stop drinking. Eating runny cheese. Stress about prawns and pate.
But we are not in control.
We slice grapes vertically, check straps and seat belts, await texts and messages of arrival at destinations.
But we are not in control.
With medically complex children, that checking, that fear, that raw grating breezeblock of fear sits in the pit of our stomachs even more so.
An simple illness can escalate out of control. Normal response markers are abnormal. More is unexplainable than explainable. RD died because the abnormal things his body did in response to his degenerative kidney disease, didn’t respond normally to treatment. And yet, those responses had kept him alive and well far far longer than ever predicted.
We are not, ever, in control.
I have friends whose children have regular, and yet unpredictable seizures. That stop breaths. That change development. That fear rises into their throats weekly, fortnightly, monthly. And they just are expected to swallow it back down. Live alongside the fear.
Accept the lack of control.
In some ways, the tangibility of death feels easier to grasp than the intangible fear of death. There is an absolute, a finite. Something to try and cope with, take some control of. Even if most of the time that control is a construct. That a lot of the time, I feel that I am reminded more that RD is dead than I actually truly think of it. But I’m also aware that I’m so very early in my grief. Shock still feels overriding. That and a heartache that just sits, changes my taste of the world, my ability to commit to conversations in the same way as before. A little foggy distance because I’m aware of a change.
I know that it feels crass for those friends to talk to me about the fear of death now we’re living the actuality. But I know from experience how that fear feels, remember I wanted to run up a hill and punch a fucking cloud? It was stiflingly hard. So hard that when he died, when we entered a real phase, when so much of caring for him suddenly evaporated, dare I say it, it felt easier. Easier knowing how he felt and not second guessing. With only our own feelings to contend with, but understanding that we’re all now dealing with A Thing. Death. We are now permitted to grieve.
I’m living through this intangibility now. This fear that the minute I can’t feel kicks and jabs, that this might be it. This baby has died. On top of my reflux, my throats constricts with fear probably twenty times a day. Not ever for long, as they soon return, but in that moment I feel internally stilled. I may be looking or talking to you perfectly normally outwardly but inside I’m clawing the walls with fear.
So I tell myself, I take a minute to understand, I’m not in control.
Find the present. Don’t Kate Bush it up that hill. Not yet.
And there it is, another kick of reality.