Why the phrase "Curiosity Killed the Cat" Haunts Me

Seven years old…our son.  Bilateral Persylvian Polymicrogyria, Lennox Gastaut Syndrome, Polymerase Gamma 1 Mitochondrial Disorder, Osteogenesis Imperfecta, Nephrocalcinosis, Neurogenic Bladder, Dysphagia, progressive, degenerative, palliative, terminal…our son.  Cute as a button, infectious laughter, extra-long eyelashes, blushed cheeks, prefers blondes, lover of country music, baseball player, first grader, wordless but wise, morning person…our son.  Feeding tube, bowel management program, cathing regimen, ventilator dependent, suctioning needs, tracheostomy tube, percussion vest treatments, wheelchair, fifteen specialty physicians, therapies, therapies, and more therapies…our son.

Dog?  Not our son.  Cat?  Not our son.  Family pet?  Not our son.

Parenting a child with so many complex medical needs has made my husband and me no strangers to well-intentioned but rather ignorantly blissful commentary about our son.  Somehow I still struggle to wrap my mind around how well-meaning people find common ground with our “plight” by comparing my son’s struggles to the struggles and needs of their beloved pets?  I understand that we are not always terribly relatable, and that sometimes the effort to be relatable is just that - effort.  However, I am never receptive <understatement of the century> to the notion that somehow my son’s sensory seeking behaviors – like his love of chewing his fingers nearly to the bone – are somehow the same motivations that your beloved “Fluffy” has for chewing.  By the way, shopping at the local pet-store for “chew toys” for my son is not something we will ever do, but thank you for the kind suggestion and we are thrilled that you were able to find some long-lasting squeaky toys for “tough chewers” like Fluffy.

I have established that our son is not your pet – he is not our pet either –he is an awesome little human being with infinite value who has taught us a lot about love and acceptance and I fear he is beginning  the end of his courageous battle against mitochondrial disease.   So why exactly does the phrase “Curiosity Killed the Cat” haunt me in the darkest recesses of my very sleep-deprived brain?  The same places where I store up the seemingly endless nonsensical scenarios of doom which always involve breaking my two front teeth in half or my irrational anxiety of  burning the house down because I threw a piece of burnt toast in the trash and maybe I threw it on top of a dry paper towel which might spark and catch on fire which will then result in our house turning into a pile of ashy dust and what insurance company will cover a house burnt down by toast???  <deep cleansing breath>

Seven years of countless tests, hospitalizations, procedures – DIAGNOSES - more tests, more procedures, more hospitalizations and now we come full circle investigating yet again for more diagnoses to explain possibly another rare condition without a cure.  What is it that drives our rather fierce need to know even when we are well aware that nothing will change the outcomes?

This week my husband and I were given the “option” of having a sedated brain MRI for our son to investigate some new symptoms that have recently developed - mainly some really disturbing muscle spasms, neuropathy, and increased seizures of a variety we have never experienced with our son and we thought we had experienced every seizure known to the medical world: tonic, tonic clonic, complex partial, infantile spasms, grand mal, subclinical, myoclonic, absence, status epilepticus…but what in the heck are these facial-like seizures??  Are these seizures at all?  We wanted to know, but sedation and mitochondrial disease do not play nicely together and after some fairly unfortunate past sedation attempts we are hard pressed to find an anesthesiologist – even in one of the top children’s hospitals in the world – who will sedate our son unless it is a life or death situation.  Is this life or death?  Well, we don’t know??  Maybe?  To us, yes?  The advice of many of our son’s trusted physicians against further investigation left us confused, and for the first time during our seven years as parents, left us somewhat hopeless.  Was our medical team so sure that the risks of further testing far outweighed the benefits of knowing a little bit more about disease trajectory?  Was the potential to perhaps slow disease progression not enough to take the risk?  For the first time ever, our son suddenly felt like a cat, and were we really going to kill him just out of curiosity??  Was our “NEED TO KNOW” actually going to kill our son, when all we have ever wanted was to save him, desperately so?

I was having an existential crisis about my own son who I had established LONG AGO was definitely not a dog, and definitely not a cat, despite the failed attempts from others to equate him as such, but who doesn’t know that “curiosity killed the cat”??  For a moment I thought, well CRAP, did our doctors think Owen was a cat too?  I don’t even LIKE cats!!!!  My husband and I found ourselves just sitting there in clinic staring at each other, hunched over, staring at the doctors, staring at each other, staring out the windows, staring at the bleak tan walls decorated with whimsical pictures painted and drawn by able-bodied children, children whom my son would never become  – and there it was a drawing of a patchwork cat.  We continued to sit there as wordless as our son - but definitely not as wise (and I swore I could smell toast burning down the hall).  Perhaps our son was a patchwork cat?  Perhaps we intimately knew about some of the pieces of who he was, but that we would never know what the red spotted patch, the yellow zigzag patch, or green striped patch were truly made of?  Would it matter if we knew?   Would it change that he is still a patchwork cat made up of many different materials and fabrics.

Somehow we found ourselves in a ship that always seemed to have a good sense of direction, even in the stormiest seas, but all of the sudden it felt like we were sinking.  The decision was laid fully on us about diagnostic testing and the admirals of our ship – our trusted physicians - wanted nothing to do with the direction we wanted to sail.

“How do you want to proceed mom and dad?”
"It is up to you mom and dad?”
"You understand the risks don’t you mom and dad?”
"You understand this won’t change the outcomes of his disease mom and dad?”
"Mom...mom...mom...mom...mom???"

Why can’t they ever look at dad or say dad first?  Oh the pressure!  I ran my tongue roughly across my two front teeth to make sure they were still steadfast in place.  The agonizing, aching, anxiety swelled up in the pit of my stomach as I said, “I want to know, let's do the testing”.

Today, our son had a sedated MRI and we are awaiting the results, the results that will not change the outcomes of my son’s life, but results that might help us know if we need to change the direction of our ship even if it is against the advice of our admirals.  The results that may or may not help us better define the green striped patch on our patchwork cat.  Our quirky little man is smiling and doing well post sedation and desperately showing everyone who enters his room his IV site and how much he is “suffering” from it with a rather dramatic furrowed brow and IV arm waving in the air.  We are thankful he did well.  We are thankful we made the decision even without our physicians approval, because our son is not a cat.  He is Owen.  Our son, with many patches - some we know very well - and others we will likely never understand the fabric of which they are made.  Curiosity killed the cat…but our son is not a cat.



Fellow Mommies of Miracles, when it comes to our most medically fragile children...do you think we will have the wisdom and discernment to know when to say "enough is enough"?  Should we ever say it?  Should we resist our need to "know" if we also know that the outcomes will remain unchanged?  How do we weigh risk when the stakes are already so high?  Please comment and discuss.