How Much can We Take?

I laid in bed wondering last night, how much one person, one human being can honestly take.  It was not supposed to be a pity party, it did not even start as a self-directed thought really, just one passing thought amongst many others I got stuck on for too long.  My mind quickly became a swirling wind that took me many places within an immeasurable amount of time.

I thought about my daughter and how many hospitalizations she has had since she was two.  I thought about the abilities she has lost, and gained, only to lose again.  I thought about the countless interventions she goes through and how at the ripe age of eight she already knows how to take care of; central lines, urinary catheters, feeding tubes, oxygen, vital sign monitors, medical syringes, and prepare blood vials for lab draws, but she shouldn’t have to.  I thought about her pain, both physical and emotional as she has experienced true “10’s” on the pain scale as well as pain that cannot be measured as her friend’s left her behind in this world after years of suffering from the same disease that she has.  How much can she possibly take?

I thought about my son who shares her genes as well, the ones that most likely caused their mitochondrial disease.  I thought about the fact that he was born having to know how to fight.  I thought about the fact that he never truly knew a moment’s peace as he experienced tachycardia even in the womb.  I thought about how being uncomfortable is the only thing he has ever known.  I thought about his first weeks and days being poked and prodded by doctors who needed to figure out why he was spitting up blood and breathing like a premature baby even though he was born on time.  I thought about the oxygen tubes and wires that he had to learn to navigate as he tried to master all of his milestones and the fact that even though he had to work extra hard to meet them, one bad illness swept them away again.  I thought about the burning fury my heart felt for my little boy then.  I thought about the fact that without a single medication our son cannot regulate his own body temperature, blood pressure, heart rate, breathing rate, or sweat response correctly, and that one pharmaceutical error could land him in the hospital.   I thought about his little lungs that never really did develop correctly and how they can cause him physical pain when he breathes from time to time.  I thought about the fact that just last week he told me his legs are always tired and have “boo boo’s,” he is only four, there is nothing right about that.  How much can he possibly take?

I thought about their siblings and what they have been through, the ups and downs of having a brother and sister who have been sick as long as they can remember.   I thought about the years in which they were constantly being handed from one friend or family member to another so that we could be in the hospital.  I thought about the events we missed.  I thought about the birthdays I had to leave in a hurry as one of their siblings crashed, or the hospital finally found a bed for them when they were ill.  I thought of the vacations that we promised the kids that ended in travesty as their siblings needed to be admitted, as it turns out you cannot take a vacation from chronic disease.  I thought about their faces as I have had to continuously tell them “one more minute I promise,” as I am securing their sister’s G-tube, drawing up meds, or repositioning their brother’s pulse oximetry probe.  I thought about the train of strangers that have been introduced to their lives as; nurse after nurse, social worker, palliative team, medical suppliers, Church members, babysitters, etc have come into our home because of their sibling’s needs.  I have thought about the sheer terror they have had as the ambulance has come for one of their siblings as they have cried “please don’t let them die,” having seen their siblings; seize, turn blue, scream out in pain, be unresponsive, and other things no child should ever have to see.  I have thought about how mature they have been and how they, like us, have held their heads high and continued to put one foot forward, but how much can they possibly take?

I thought about my husband.  I thought about the hours he puts in at work, working for both himself and the hours I can’t contribute needing to man the homefront 24/7 .  I thought about the fact that none of this was within the plans we made and yet here it is.  I thought about the fact that this is probably so much more than he bargained for; two children with a progressive disease, a wife with her own chronic illness, living nowhere near extended family so we could make a living, having the weight of the world on his shoulders.  I thought about the vows we made and how after almost 10 years he still is in it, for better or worse, richer or poor, sickness and in health.  Boy, did we nail all of those.  I thought about how proud I am of the man he is and the love he has provided for us, but I fear some days how much he can possibly take.

I thought about my village.  I thought about the many times I have had to rely on them and the many times they have been there.  I thought about the many times we have had to ask for help, and the many times we have received help without asking.  I thought about; the meals, the donations, the time spent from others, the prayers, the listening ears, and the rallying of the forces.  I thought about how when a trauma is short lived many people can rally in and rally strong, but defenses usually fall quickly only being able to take so much, it is only human nature.  I thought about the fact that our trauma is never going to go away, so how much can they possibly take?

My racing thoughts eventually ended in slumber, although I will admit, it was not exactly a restful night sleep.  I woke this morning to begin my usual routine, step by step, just as the day before.  Unusually I had a little time before my alarm so I reached for the prayer book my father had brought me that belonged to his parents long ago.  I thumbed through it’s pages searching for nothing more than just the pleasure and comfort of knowing I was touching something that they once held.

The ribbon page marker was separating pages fifty and fifty-one, the titles reading Don’t Worry and One Little Secret of a Happy Life.  “Sure,” I thought, “If only it was that easy.”  Clearly the Priest who wrote this devotional back in 1908 had no idea what would be in store for our family, and families like ours, the burdens we would carry.  Then I caught myself reading instead of allowing myself to continue the internal dialogue that could easily have erupted into the full blown self pity that brings hot and angry tears.



"We can not fight this battle continually for half a century.  But really there are no long stretches.  Life does not come to us all at one time; it comes only a day at a time… It is a blessed secret this, of living by the day.  Anyone can carry his burden, however heavy, till nightfall.  Anyone can live sweetly, patiently, lovingly, purely, until the sun goes down.  And this is all life ever means to us ­­­­– just one little day." (Lasance, Rev. F. E. 1908)

And there it was, in plain black and white text, the answer to my circular question from the night before.  All any of us can take is what we are given in a day, in that moment.  Not a being on this Earth was meant to live more than just a day at a time, to breathe more than just the air that is within our lungs upon each breath.  The pages we have already turned are the very answer to the question, “how much can we take.”  We can only take what we are given today.  So, we will all continue to step forward with our heavy loads, placing them on the bedside table each night, turning our burdens over to God, knowing that tomorrow’s little day is yet to come, and today is said and gone.

Now that is something I have faith we all can do.
-Lasance, Rev. F. E., My Prayer Book, Benzingers Brother Inc, 1908

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.