During my son's first hospital admission, which ended up lasting a whopping 7.5 months, I remember sitting bedside in his little room -- first in the NICU (neonatal intensive care), then the CICU (cardiac intensive care), and then the PICU (pediatric intensive care), and then finally the Medical Floor where we completed training in preparation for home-going with this little, medically-fragile infant.
I sat bedside, soaked in the quiet trauma of hospital life, often on my own, and imagined what life would be like when we finally left our son's sterile, yet reassuring and supportive, first home.
I talked on and on about how I would protect him from all the hard things. I voiced these plans, mostly to myself, sometimes to his dad or my own mom when they were visiting, and often to the bedside nurses supporting my son in those early months.
"The hard things are behind him," I said, with such confidence of that truth. I'm not sure who I was trying to convince exactly -- probably myself more than anyone else.
However, I was quite certain that if I simply tried hard enough, I could shield my son from any future emergency, surgery or illness. If I just did everything right. If I was just a good enough mother, then he would never get sick again.
That is a whole lot of responsibility to place on yourself.
It is also complete and utter bullshit.
Because what are you going to do, really? You simply cannot shield anyone from everything. It is not possible. That is not how life works.
(Looking back now, I realize how much of my approach to parenting in those early months was directly connected to birth trauma and subsequent medical trauma I had experienced as a result of that time in the hospital. Like all medical parents, I should have been referred directly to a trained therapist for support during that hospitalization. But, also like most medical parents, I was not.)
Nurse after nurse joined me in that place of deep thinking, sitting with me through those conversations, as I watched this tiny, little fragile being struggle to breathe, struggle to grow... just struggle. He had already been through so much, and I feared he would not have the strength to withstand the next battle... or the next... or the one after that....
I was scared.
Of course, I was scared.
Pediatric nurses have this wonderful way about them. They have this particular ability to embody the exact blend of support and honesty you need as a parent. They are caring and empathetic, but also help you walk through the reality of a situation.
Maybe it is learned from experience. Certainly, they have seen some things. They have cared for a lot of kids. They have managed hard emotions and dealt with many families in various stages of falling apart.
Maybe it is innate. A calling, a gift....
In reality, it is probably some combination of both. We are all a combination of personality plus experience.
But, as I sat in those little hospital rooms, holding in my arms the tiny body of a too-tiny baby, ruminating on my plans for self-perfection and convincing myself of the lies I wanted so badly to believe --
That I could keep him healthy,
That I could keep him safe,
That I could prevent life from hurting him, even in the slightest of ways --
It was those nurses who pulled me from my mental spiral. They pushed back, grounding me in reality.
"Things will happen no matter what you do."
"You can't keep him in a bubble. Why would you want to?"
"Reasonable precautions are good, but you don't want to stop him from living life."
"A part of life is about risk. You have to let yourselves live with it."
"What life will you have if you are afraid of everything that might happen."
I wasn't ready to truly hear any of it at the time. Not from them, or from anyone.
But I remembered it all.
It stuck with me.
And eventually, I came to see they were right all along.
No matter how much I sanitized and scrubbed, my son still got sick. No amount of love and hope prevents a diagnosis of epilepsy. No degree of parental anxiety will offset the need for surgical intervention.
I can be scared for my son's health. I can agonize over what might happen, what could happen. I can dwell, and I can cry, and I can wrap myself up in a ball of nerves all day long. And honestly, few would blame me for it. There are any number of reasons to worry about my son's health, about his future, about potential emergency situations. Very few would question my decision to build a bubble up around him.
I could spend my days building and maintaining a sterilized bubble of isolation around my whole family. I could do all of that, but at the end of the day, I know from experience that it would prevent very little.
We have no idea what might happen tomorrow,
or five years from now,
or even five minutes from this very moment.
My husband might drop dead from a heart attack two days from now.
My mom or dad might just not wake up in the morning.
Next Tuesday may just be the day that one dude driving too fast down the hill by our home finally takes me out. He's tried before.
Something horrible could happen to my sister or brother, my grandma, or to my son.
I hope none of it happens.
But it could.
It might....
And we know these things.
We all know these things.
And so, all we can do is live and try to do so boldly, fearlessly, courageously, and with all the audacity and gusto we can muster.
Be careful, sure. Take reasonable precautions. And for fuck's sake -- plan ahead! Be the most prepared person in the room. Eat healthy, take your vitamins, get your shots.
And then, get going. Go live! And do so in a big wide-open way.
Bubbles are beautiful for play, but humans are not meant to live inside them.
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