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