Is it possible that we've seen the best of Segev? He will turn 14 in March. In the past I would never have let myself make pronouncements so far into the future where anything 'Segev' was concerned. After Owen, Jennifer's son, passed away I have been more fearful than ever. I bought her book, "No ordinary Boy", right when it came out because I wanted to support her and felt a kinship towards Owen, despite vast differences with my own son. His death is something I don't like to think about but do anyway out of respect for the enormous loss that his parents and brother suffered, all the more since it was quite unexpected.
Segev is different in that for so long his life has always been a terrifying question mark due to such a medically fragile body where serious lung infections have repeated ad infinitum, massive seizures and multiple episodes of status epilepticus push him close to the precipice and six or seven times he had spontaneous complete cessation of breathing. Burst intestines, difficulty breathing and a long list of dangerous medications help pad the list.
As a result Segev should be something like an old car battery being jump-started, springing suddenly into a staccato life, while I, with little more than catnaps throughout the night, watch for years on end.
A while back I met a friend through the blog, Phil Dzialo, who maintains two central points of view, both of which I disagreed with until very recently. One is that frustration with family and friends disappearing, not being there to help us in our little world of extreme parenting/caregiving. To me it is all very understandable since nothing in their lives has changed whereas our lives have been wrung out like ancient boulders that magically produce a few life giving drops. While we stand in awe and wonder at those marvelous drops, they can't understand nor are attracted to the notion of helping anymore than those who slow down to see the carnage of some horrific traffic accident. "Don't stare, children", even the words are the same.
But the second point which is a constant source of concern for Phil is that his son will outlive him. I wish Phil peace and longevity but it is true that his son Adam, as the product of his wife Sharon and his efforts to provide health and protection may be doing their job so well that Phil's concerns are forebodingly well founded.
"Life isn't short!" Phil often says. Well I have been living the last thirteen years as though life will end possibly within a few weeks, not rarely as though life could end within a few days and occasionally and with just cause, as though life could end within the next hour. Certainly each little disruption or even potential disruption of my son's health, be it accumulation of phlegm, pressure on his spine, a change in the nature of one of his seizures or changes in patterns of consciousness have been given very significant weight and have required enormous diligence to mitigate the dreaded cascading effect we can often see in such fragile human beings.
Several times I have said on this blog how Segev has changed since his hospitalization in January-February of 2011, where he had to contend with swine flue that led to status epilepticus that was improperly treated in hospital, catching gastroenteritis and finally severe viral pneumonia, all while in cyclical vomiting mode and living off of 5% dextrose for three weeks.
Since then he has suffered bouts of excruciating pain, disordered sleep patterns, the return of massive seizures from bygone days and the appearance of new seizures.
But most disturbing to me is his changed pattern of consciousness. His moments of awareness are fewer, more fleeting, predominantly and easily replaced by a stupor, his smiles fewer or simply not forthcoming. Secondly, now after a massive seizure that sees him turn blue despite oxygen his recovery doesn't take hours it takes days.
In some configuration or other I have seen these phenomena with my son before. To put it in dry academic terms, nearly fourteen years with Segev have provided a wealth of experiences and knowledge. But something has changed on a deeper level with him and I can honestly say with myself as well. My role has not changed. As his father I am certainly responsible for Segev emotionally, as caregiver his needs for comfort and with a medical background, I strive to maintain his health. My motivation to fulfill this role has not changed. What has changed though is that now I have come to see our places in a somewhat different perspective, one that is much closer to Phil's "life isn't short".
There was a moment where I instinctively felt that this extreme awareness towards Segev's condition, having taken a physical toll on me, could no longer continue in the same fashion. Since I cannot change Segev's condition the only way to change anything is to change my attitude and while it isn't a smooth fit, I've decided, also after gaining impetus from a vision of sorts that I had in the same week, that a long term outlook is the only one which will give me the energy and sanity I need to continue.
This doesn't mean that I believe I made a mistake with the approach I've had until now but merely that the time for change is nigh. Whether the coincidence of Segev's continued altered state has a special meaning or not, I can't say.
In May of 2010 I invited my ailing mother to come and visit us in Israel because I knew that it would be the last opportunity for her to travel and she needed to be cared for, even if only for a short while, in a way which she could find with her son and grandchildren. She arrived a bit depressed, rather naturally I would say when you have been given the diagnosis of a fatal disease such as ALS, still walking, though with difficulty and suffering quite a bit of pain. She left rejuvenated both physically and mentally despite that my energy and state of mind were at a low point due to the strain of caring for both her and Segev. For me it was also really a way to say goodbye while she was still herself, lively despite no longer having the ability to speak and still reasonably in control of her body.
Nevertheless over the last year I have continually thought about making a visit happen, to see her and see if one last time we can have that special spark between us which invariably has us laughing, perhaps she only on the inside as her paralyzed face is expressionless.
Each time that I seriously considered the rather momentous undertaking, which not only emotionally would be difficult but financially nearly impossible my plans, even on the eve of purchasing a ticket were always dashed by that overly familiar hand of Deus ex Machina, Segev.
As a lifelong therapist I find it particularly difficult to come to terms with the fact that as far as easing suffering, I can do nothing more for my mother. It might seem logical then that a part of the desire to see her stems from a kind of guilt. To most people the need to see her would seem only natural, I'm certain, but my way of thinking, my way of doing all these years with Segev has changed me to the point where I would be wracked with guilt for going.
Such a feeling begins in the mundane, with anything that involves casual, less meaningful activities. Going to the movies, to the beach or even resting at home have all caused me to feel guilt since how can I allow myself enjoyment while my son lies and suffers. If only I were to spend a few more minutes massaging him, studying about neural cell migration under the influence of vip, visit one more physician or work a little harder lifting weights so as to hold him less precariously as I carry him flailing from a seizure up the stairs to the house. How can I justify to myself living in any normal way when everything has been taken from him and life is not to be taken for granted?
Well, in part I have this blog and the wonderful people I have been able to connect to through it, to thank for the answer to that question. It still feels to me as though I am walking on a crumbling precipice because true change is a very disturbing experience. Expressing myself here has allowed me to organize certain thoughts which otherwise would not have found a home. Listening to others' experiences also teaches me that one of the most destructive elements of this endeavor of parenting is isolation. Breaking that isolation only through words cannot begin to be enough. Actions, very much like Blogzilly's "mission: ipossible" seep into our lives and give confirmation that in isolation we achieve very little.
There exists an isolation which naturally comes from the condition we find ourselves in. At home, taking care of a chronically ill, severely mentally and physically compromised individual is a task few can manage because ultimately you must sacrifice a great deal of yourself to accomplish it. Certain people may be a better fit for this kind of life altering situation and each family's circumstances are different, making comparisons nearly useless for understanding how best to deal with the hardship and isolation. But there is also an isolation which comes from ourselves. Whether it is a simple protective mechanism since we must conserve our energy and thus interactions, or slightly more disturbing, the negativity thrown our way, or more sinister, our own frustrations with a life that is brazenly at odds with what we understood life should be like, could be like as we formed our view of the 'normal' world.
For better or worse I hope I can, coming as I am through my experience, from an other end, make a change towards a less isolated view of myself, allowing new energies to come in and go out. An outlook that is sustainable in the long run, since what I have been doing is not.
Of course I can't forget my mother, despite the distance and rare communications, despite having felt that I was able to say goodbye to her as the person I have always known, not as the illness which encompasses not merely her appearance but smothers the very essence of her being - the ability and need to communicate. But in truth I don't believe in goodbye's. Never have. When you love someone deeply it is something which stays forever, I've seen this work over decades with different relationships, whether I wanted it or not.
The fact that my son's condition is not getting any better of course added monumentally to my decision then, to simply, after all, see my mother and spend two days with her.
Leaving Segev now, for nearly four days, could quite simply be called a leap of faith and one that I have taken; tomorrow I will board a plane and see what's goin' on outside. Perhaps I'll simply find that a few days of quiet worry from afar, without the incessant rumbling of suction machine, inhalation, barking of orders, quiet exasperation and physical exhaustion will be enough to focus on the real purpose of the trip, to simply be, to kiss her forehead and to once again say, 'hi, mom'.