His crises of pneumonia and severe pain, seizures and intricate care are relentless but also increasingly difficult to manage. Yesterday was the first time in seventeen years that I had to admit defeat. Perhaps I've been beaten before (memory is a fickle thing) but yesterday was the first time that I consciously said, no, out loud , 'I can do no more'. The particular instance in question was not the constant twitching of his limbs caused by pressure on his deteriorating spine or the general lethargy from lungs so overflowing with secretions that he actually appears as though drowning. That was the day before yesterday. Yesterday, despite proper chest physio, including the use of an ambo bag, despite that eventually air moved reasonably well into his right lung and, as much as is possible, into his collapsed left lung, his oxygen level simply would not return to status quo. He was at his mother's, the day I am supposed to rest up before going to 'work', as physical therapist helping others manage their pain, the work I get paid for. And so, after approximately one hour of treating Segev I raised my hands and said, 'that's all I can do'. Segev was just conscious enough to moan as I changed his position, placed him once again on his back, but I doubt he could sense my gently stroking his hair or the kiss on his forehead and cheek that I left him with. If there were any further deterioration I would hear about it. If he remained stable, it would be with this new paradigm, a reduced state of health to accept. There will be no more pondering, no more excitable delving into research and arranging meetings with professionals who could possibly, just maybe, offer a glimmer of encouragement, no, just acceptance. But he improved slightly, just enough, and I let out a sigh of relief; 'The worst is yet to come', remains a little further off, for a little longer.
Have you seen the film "The Road", with Viggo Mortensen? If you haven't, then don't, unless you want to be thoroughly depressed, disgusted even. The film is sometimes over the top, as in, zombie film over the top but the journey that the father and his son take through an apocalyptic wasteland haunts me. You see, without a sense of exaggeration I identify with that father who, in putting his son's survival above all else, is doing so at the cost of his very own life. I see a reflection of the father in myself, even in the mistakes made which ultimately put his son in increased danger.
Like me, he puts his son at the center of the universe. There are advantages to this mindset and the internal logic of trying to extend time until the inevitable demise of my son. But internal logic is always blinding, like diving into the unlit corner of a narrow twisting mountain road on your motorcycle (as I found myself once upon a time), suddenly confronted with an oncoming car, its high beams shining fully in your face, knowing that if you want to survive the only course of action is to stay the path. Once you commit to that perilous arc, head, though protected by helmet, precariously protruding in the direction of the oncoming vehicle, you must stay the course. Any deviation, other than gingerly pulling your head to avoid smashing it on the A-pillar, will result in tragedy.
Embracing the internal logic of preserving the life of your catastrophically disabled and medically fragile child, it is there that you find absolute meaning. Therein lies a strange comfort zone. You know that there can be nothing more worthy than protecting your child, from his diseased state, from endless incompetence of uncaring medical professionals, working yourself into a decrepit shadow of worry and exhaustion, working to give your child the opportunity to just smile once again. That is, until that moment may come when you realize the effort required is no longer sustainable. The smiles become a memory and finally your own aching back and wrenched neck force you to take a good hard look at yourself and you realize that the years of chronic sleep deprivation have destroyed large swaths of memory and you are fully aware that hallucinations, even for a split second, are a regular presence in your daily life.
Gone are Christmas holidays, wiped from memory in a way that even watching video of it will not stir an inkling of recollection. Some 'ghosts' of memories remain; you know, absolutely, that you took your kids on a trip, had a good time, laughed, told bedtime stories, but you can't actually remember doing it. The level of frustration only increases because those memories were precious.
But you stay the course. Now, not because you know that any deviation will result in disaster but because it has become the only place that you know how to do things. Everything else feels strange. Your reactions lack context and proportion. Then you realize, as though thrown a lifeline (perhaps having been thrown several before by others, but unable to recognize them for what they are) that it is exactly because of making the care for your child the center of your universe that the price has been an ever increasing self-imposed ostracisation. And you are now torn between retreating further into your shell, building more walls of protection, from uncertainty, from weakness, or, to acknowledge your weakness, your inability to further withstand the battering of waves breaking on the foundation of your hope; no longer that you will be able to maintain your child's health and happiness, if you would just put a little more effort into it.
But the light and warmth of that fire is dying out. Not for lack of understanding, not for lack of wanting, but because in an effort to stave the inevitable you have burned up all there is to burn. You have gone so far as to willingly scorch the very earth you stand on, to feed that fire.
At the center of the Universe there is a light, a special kind of light that few have seen because the very act of seeing it, blinding, exquisite light, burns. Memory, kindness, thoughtfulness, happiness are all tinder to this light.