Segev is breathing hard and I can hear other sounds as saliva enters his air passage because he has no control, no way of coordinating swallowing. I’ve spent time talking to him, telling him how much his stuffed toy dog is his friend and gives him hugs and kisses and barks wildly at nothing at all and there have been times when he smiles slightly at these antics of mine. He hasn’t vomited even once today although there were many close calls. I’ve spent time treating his neck and back with both massage and Shiatsu, applying pressure to relieve some of the pressure on his back, trying to maneuver his left shoulder to sit back into the socket, lengthen the contracted neck muscle on that same side and apply pulmonary physiotherapy to his chest and back to help move some of the phlegm outwards. I’ve given him his evening medications, first removing air from his stomach and replacing the sterile bandage around his leaking gastrostomy tube, prepared his special ketogenic meal from scratch, helped him have his bowel movement by massaging his abdomen and instigating the release of the anal sphincter muscles with the flexible probe of a thermometer. He has finished his evening inhalation therapy to dilate his bronchial tubes but his irregular minor choking on saliva, regular coughing to bring up phlegm, constant rasping continues and I strain to simultaneously partially lift him and shift his back to a more upright supported position against the multitude of cushions on the couch.
There are three places which define his world. His bed where he stays during the night for up to seven hours and his wheelchair and couch, that share approximately equal time between them, alternating regularly to give him more comfort, prevent issues of circulation associated with long spells in one position and allow for the various elements of caring and treatment he requires throughout the day.
I’m watching him from less than two meters away, sitting at my desk, while his neck lowers itself slightly and his chest and shoulders raise themselves in unison as he is breathing, rasping air at least signaling to me that he is breathing, which is definitely not a given for my son.
Always without warning, a seizure grips him with a staccato dance turning his face blue in absolute exertion of muscle. I grab his flailing hands so that he will not strike himself hard or scratch his eyes with his overly long nails. It seems I am always clipping his nails, to no avail. The seizure is violent enough that I reach for the oxygen tank and twist open the main valve. It would be quicker if I could leave the main valve open and then only have to release the metered valve to the desired amount but plagued with eternally leaking seals on nearly every bottle of oxygen makes me do a two-step to get oxygen flowing towards my son’s brain, allowing him to recover more readily and regain consciousness, not drifting off exhausted, non-responsive. His mouth is making clicking noises as his eyes explode back and forth and I think for a moment that this must be what happens when people are electrocuted.
With a few final jerks of his head, arms, jaw, legs and abdomen he finally goes limp, but not with any sigh of relief, just quietly. The difference is so great I have to check if he is breathing at all even though I know his episodes of central apnea have never occurred after a massive, visible seizure like this one. His color returns quickly and his eyes close. Even his breathing is softer, missing both the stertorous rasp and the heaving momentum that grips his every breath. I replace the probe on his finger and thankfully it immediately begins measuring his pulse and oxygen levels, automatically cancelling the strangely pleasant sounding beep of the alarm.
I stand still and wonder at things, not tiring of the grass or the fields. The grass and the fields seem to me to be nature thinking her thoughts and my thoughts diminish, less perplexing, less profound.
The body, unlike the sea with its certainty, changes, challenging us to remain who we are, what certainty. "I can still laugh at things". My mother, no longer changing, slowly, lost, the change done, no longer holding or upright moving, her laugh chiding sadness.
One hand. One hand still typing. One word still repeating. Love.
If one cannot grasp this, then one does not have anything worth holding on to. Holding time very steady and still. So time blinks and we are roving, planting ideas. Hovering sweetly to know someone, carrying the proof in our hearts.
Whether something was taken or given, we say grace.
What this does not show is the "R & R", the rant and rage, that I found myself in.
Here is something I wrote the other day:
It has taken me thirteen years - I'm slow like that - but I have written the anger out of myself. This is a process which appears to have reached its climax recently, not a momentary deception of elation, but a real thing. I feel like even when harmful, negative behaviour I have seen or felt, is simply not able to raise anger in me any longer.
Then what are you left with when you are so very very tired physically and your son won't stop vomiting each time he coughs? Unable to properly coordinate his breathing and swallowing of salivacausing more choking. Has an entirely new seizure, where he is still conscious and aware and there is the expression of fear on his face. Loses his balance and racks up one seizure after another, filling the day. And the night. Having replaced his g-tube, which now leaks even more, is more sensitive as his complaints readily show. Gulps down air like there is no tomorrow building pressure and making each meal stretch out for hours so that you finish after one in the morning hoping some of it will stay down and introduce a minimal amount of nutrition.
All in one day? I guess you are reduced to animalistic instincts and you lash out verbally. You growl and ache and shout and scream bloody murder. Even at your kids. That's what I was left with. Ready to fall down from fatigue apparently. But it passed and I know that it has passed because I don't feel some kind of sheepish guilt about it. But not swallowing any pat pill of justification either. That would make for a lack of control, emotionally. I've had it out with myself, reprimanded myself yes, but not defeated myself (yes you actually can defeat yourself).
Like Ken has said and I whole heartedly agree with, as I see it not only in my own life but in that of patients', there is something in the air which is putting us on edge. Things need to come to a head and the trick is to see that our thinking can spiral into negativity. I'm certain this is no easy task to recognize and stop. But it will be stopped if only for the reason that negativity is all around us if we choose to see it as such and that simply will not do. I believe we are much more masters of our destiny than we know.
It's not that I want to exaggerate here, but I feel like something is pulling me down. The realization that it could be something from within, some kind of instinctual reaction of my own, is even more frightening.
This tension we feel, about uncertainty, is very real and i could feel it in my chest as a tightness that began independant of the physical effort I made while struggling at the gym today. I looked down at my feet moving elliptically on the stepper and the floor felt heavy.
So I felt this heaviness and in concentrating on it defined its boundaries, felt the form it has in my body and began to manipulate it, trying to change it into a more flowing energy, moving circularly instead of pulling me down, with moderate success. I felt my mood lift slightly as I coerced my concern to abate.
The worry over Segev, since yesterday that he began once again vomiting massively; vomiting his meals, his anti epileptic medications, his anti vomiting medication, the ginger, the phlegm diluter, the water, the potassium citrate to prevent kidney stones, suddenly gripped me yet I couldn't help feeling that it was exaggerated. The worry is real but I guess I am just a little bit too tired to read it in the right context. Either the mental/physical fatigue makes me less resistant to the programmed fear or the fear that I can't deal with it like in the past has popped into view, paradoxically together with the recent more balanced perception that, control isn't everything and I've come to the point where if I don't start putting myself first, there won't be a lot left to help Segev with.
Palpitations sometimes keep me from sleeping but since I know that the heart condition I have is stable and minor it is imperative I continue my meditation to manipulate this lump of stagnating energy I feel and keep it flowing through my body. I really thought that the epic hospital stay, after it had wrung me out and left just the essentials of spirit clunking on in some asynchronous modus vivendi had cleared away all extraneous confounding issues. No more fear, I thought. No regrets.
So what I'm really saying is that I don't know what it is that's bothering me. I keep telling myself that it is the accumulation of fatigue. Everyone seems to agree with that. The trouble is, in the last two weeks, as Segev settled into a relatively sublime state of being, having finished over fifty days of vomiting, I had several good nights of sleep. For as far back as I can safely remember, the number of such nights barely exceed the fingers of one hand. But while I feel like a completely different person after, feeling like a person who I would like to be, I want more. Like a drug, I want more sleep. And that I can't have it is pissing me off.
Am I simply getting older? Is it really that simple? I feel like, no, definitely that does not cover it. Something nefarious is brewing, I'm certain. There is change in the air. And for once, I don't like it one bit.
"isn't it great that we live in an age where communication helps us understand a problem that could (otherwise) easily engulf our personalities and kill off the greatness of kindness and sharing?" - From my response to Blogzilly.
The blogging phenomenon, on the anniversary of a new exchange.
One of the key elements that bring added hardship to the experience of providing care for a mentally and physically compromised child is the sense of isolation forced upon us. Yes, I do believe it is forced upon us because the onus is entirely on the caregiving parent to merge with daily life. But just as merging into traffic is a fulcrum for accidents, such parents are bound to crash into systems not designed for severe exceptions in a society which often goes as far as to nullify the value of a human life, because the difference is so extreme. Sounds a bit harsh? Then perhaps you are not a parent-caregiver of such a child.
Isolation works on several levels. Some of it is our own 'fault' since we are actually human, even though this may often appear not to be the case, striving to triumph in downright superhuman endeavors. No less extreme than bungee jumping or other extreme physical activities we relish watching on television. The kind of entertainment that, like a "Jason Bourne" flic, gets your adrenaline pumping and takes you on a wild ride.
But our daily lives are much too mundane to be considered exciting fare. Changing diapers, on a seizing or wildly flailing thirteen year old, who then coughs and begins choking, almost pulling his gastrostomy tube out of his stomach, I mean, how exciting can that be after all? Well, it separates the men from the boys when that diaper change is really a three man affair, not only because more than one obstacle will arise, with certainty and with an unflappable precision designed to wreak as much havoc as possible, but because the attempt to pre-emptively maintain control of the situation is a constant source of apprehension. And that's just one diaper change, an activity which is quickly supplanted by an endless variety of difficulties in basic communicaton between you and your child and your child and the world. And repetition of regular activities such as baths, getting dressed or any other daily activity that in normal lives go unnoticed as they are performed automatically, not in the mind-numbing, time-shifting consumption way we experience. I haven't gotten to issues of health yet, both the child and the parents'.
So being mundane does not mean, not exciting, not draining physically and emotionally since each normal action, known to us, here inundated with a value standing in striking contrast to how you have always known life to be. You cannot escape comparisons. You cannot say, "get used to it", because your whole body is trained to operate in a particular way and now must everyday discover a new way of doing things.
This is why the parent/caregiver of a compromised child works so hard and holds on so fiercely to any kind of consistency, be it in their child's schedule or in the ability to treat any issue in a similar fashion repeatedly. Some children need such a well organized schedule that any deviation from it causes a slip-slide into harm in the blink of an eye. Regularity of either kind acts as preventative medicine but can be very hard to achieve over a long period of time and the fear of losing regularity brings with it stress that is no less than that adrenaline rush "extreme" athletes or their onlookers cherish. Strangely even when we know severe injury can result we associate the sports spectacle or even participation in it as something worthwhile.
Yet when we participate in extreme parenting or caregiving there appears to be little interest. There appears to be no social justification for me to climb on my soapbox and say "look at this!", as though I just jumped my motorcycle over twelve buses. But sometimes that's exactly what it feels like. And the crazy thing is, that because it's bloody difficult to do, I want to share that experience with others. They may learn from it. They can certainly learn from my mistakes as well as triumphs. But the big difference with the armchair viewer of extreme sporting events is that those strangers out there reading about my adventures are exactly the same as me reading about their adventures. We are participants in the unrecognized, most underrated and underhyped profession since the hunter-gatherer made its appearance.
We are providing a service which is as yet unrecognized. Call it delusions of grandeur if you wish, but the ability to care for someone under extreme conditions, to deal with this painful issue of unconditional love is a significant element of humanity that stands as a stark reminder against the bullish individualism and technocratic intimation of society to come.
There are many out there who lead this life of stern commitment to "raising" their child at home despite the hardship. But we know how much doubt is an element in our daily lives, not the least of which, giant philosophical questions of understanding the place of Will, how we understand our connection to the world and act upon that understanding, whether we believe outside forces, seen, in systems of healthcare or government or social interaction, or unseen on a metaphysical level, influence us. Uncertainty of how what we have achieved will find continuity if something happens to us.
We have a basic need for certainty in life. Some will say, there is no such thing. The appearance of certainty is really what anyone has. Most ground their certainty with their membership in a group. This group is either bound by activity, philosophy or appearance. We have such a group as well. The common denominator is our children and our belief that their special circumstances require special measures to deal with them. It's a giving thing. And we give. We can't ask for anything in return.
So now comes this technology where I can write about my experiences and read others' reports, comment on them as well receive complete strangers' thoughts, some of whom have similar escapades but often different notions. The ability to communicate is not new but this particular forum of interaction also helps to build the identity of 'the group'.
Whether anyone decides to rightfully claim membership in a kind of 'fubar' club, such as half-jokingly presented by Ken, I am in some wonderment at my own statement, the quoted comment at the opening of this posting, because one year after returning to active blog duty, I found out that I began by writing letters to strangers but across time and space a special kinship has been established which is certain to change our place in society, if we firmly believe it should be so.
Hospital waiting areas are always filled with an eclectic mix of people. The loud ones, oblivious to the fact that they are not actually in their living rooms anymore with the television blaring. The talkative ones who are incessantly in conversation either on the phone or with the person accompanying them. The ones with children who let them wreak havoc as though the waiting area is a circus arena but then reprimand them harshly for not tucking their shirt in or asking for something to drink. The nervous ones, prone to inappropriate mutterings about other people's business or children.
This time I brought Segev to see a senior physician who was both an ear, nose, throat doctor as well as a mouth and jaw reconstructive surgeon. I needed his opinion concerning the options forSegev in dealing with his breathing difficulties. Late in 2006, after Segev had his vagal nerve stimulation device implanted he came out of the surgery with paralysed vocal chords. The head of the department for ears, nose, throat in a children’s hospital investigated and saw clearly that the floppy vocal chords could no longer coordinate normally and the resultant confusion caused Segev’s breathing difficulties which manifested as regular choking and a clearly increased effort.
For the ride to the professor, who came highly recommended by Segev’s coordinating pediatrician, I asked Noa to come along to be Segev’s caretaker. There hasn’t been one time that she hesitated to come along, never asking if his mother couldn’t go instead, how long would it take or whether she had to.
Sitting next to Segev, behind me, I could rely on her to perform suction as needed, adjust if necessary the position of his head, hold closed his jaw to improve breathing, talk to him and squeeze his hand if he had a seizure and notify me of anything out of the ordinary. All this from a fourteen year old girl.
The heat was incredible when we got out of the car, it being June. I had to drive around the massive parking lot several times to find a spot as even handicapped parking was taken, sidewalks were taken and when finally after ten minutes I could occupy a space becoming available it was such a tight fit that I could barely get Segev out of the sliding side door.
It was a good thing that I brought with me an x-ray of Segev’s skull from not long before as the professor didn’t even examine Segev, making his diagnosis based on his visual take alone, which hardly filled my expectations after the long drive to get there, after the month long wait to get to see him. Physicians should assume that a person coming with such a heavily compromised child has made a pilgrimage and welcome them with a tribal dance, pot of herbal tea or something other than a laconic glance over his reading glasses.
“Do you know why your son has trouble breathing?” he asked me. I recited the problem with his vocal chords and began to illuminate the good doctor about Segev’s massive kyphosis, hunchback for lay people, but he interrupted me.
“No, it is because of his receding jaw and collapsing soft palate.”This was what I wished to say in continuation but Isuppose the professor had no time for my convoluted way of expressing myself.
What surprised me, even demoralized me for some time was his prognosis. He was in concurrence with all the other physicians which had stated that Segev needed a tracheotomy. It might not be uber urgent, he said, but it was inevitable. I was disappointed because I had hoped he would bring something new to the table, even surgery that could correct the issue. He was very clear about this though, Segev was absolutely not a candidate for reconstructive surgery, nor for positive airway devices that help maintain pressure in the pharynx. I dutifully thanked the professor and we left, back to the furnace of summer weather. Shutting off Segev’s pulse oximeter, removing him from his wheelchair and maneuvering him into his too small car seat. Noa took care of the suction machine and I lifted the wheelchair, replete with oxygen tank, into the back of the minivan.
During the drive back I wondered at this sense of disappointment I had, thinking that I had no expectations anymore for finding conclusive outside help to improve Segev’s condition. But I realized the disappointment was there because I refused to give up hope.
It seems Segev, that if more than a few hours pass that you are not with me, I start to feel lost. I feel a fear creeping over me that I am forgetting what you look like. It feels as though each moment may be the last and the intensity of this feeling is as powerful as anything I have ever felt.
How can you have a sense of loss, when you haven't lost something yet?
Segev I have held you in my arms until my arms became stiff with ache and I did not care. When your brother and sister kiss you I have to hold back tears. Both from happiness, which I shouldn't hold back, and from sadness which I want to hold back as though tears are me admitting to something I don't want to admit to. This is not fair to you, my son. This is me being heavy, weighted down by a view of things which does not suit your nature, your absolutely positive being, so kind, never asking for more than you need. Never complaining without just cause. Never doubting that only the best is being done for you even when it isn't certain that is the case. Never being careless or spiteful, never holding back.
I have not been the father to you that I hoped to be, I did not provide you with the happiness that I wanted to, but of course it is doubtful that anyone can for another person. This is real life after all. But I just thought that there would be one thing in life that would work out the way it was supposed, the way I thought would be satisfying. You may think you have nothing to complain about and it is true that you are spared a great deal of misery because life is very simple when you are doing little more than surviving. You smile and you may not remember this but there was a time that you would laugh. No, not from a seizure, a real laugh that was more powerful than any drug could possibly be because it came in absolute contradiction to what anyone else in your condition could possibly muster, facing such hardship.
There are no words to describe how proud I am to have you as my son, to be able to share time with you. I have worked hard to make something positive out of this experience for you. You may not understand this, but I know that you understand that we love you.
It is your thirteenth birthday and I have always lit a little candle for you and watched you for a reaction to my wish for a happy birthday for you. And I have blown out that candle for you because you can't and I haven't cried even once about this, until now.
You are beyond sweet and you have accomplished more than I could have hoped for with a fortitude that is beyond understanding. I don't think someone can know how much you have fought to get to where you are now. You are thirteen years old. Just a little boy who has to experience simple things both good and bad as we all do growing up. You'll have to do without wisdom complicated by contradictions so rampant in our world. You get to grow up in a world which is not confounded by doubt. You get to see the world without any ugliness or frustration because you see things only in their pure form. This is a beacon of light which can be difficult to look at for someone not so pure, who feels guilt that you should have to suffer. I know this is unreasonable to think, but that is my nature, just as you have yours.
This is your thirteenth birthday and I hope that in telling you these things I can finally be done with them because I feel actually very positive. More so than ever before. It has taken me a while to understand these things, Segev. Your father is a little slow in these matters. So I thank you for sticking around, to let me learn the things I most needed to learn. That is a wonderful gift you have given, to know that we must be true to our nature. Of course you could not be anything else but yourself.
It is your thirteenth birthday and I am very happy for you on this day. You may not show any sign that it is a special day for you, but I guess that's what any parent can be blessed with, knowing that it is a great day because it is the day you came along for the ride, and you decided to stay.
Happy birthday Segev, be healthy, be strong (as I know you will), we love you.
The social worker, who represents the chronic care provider came and listened attentively as I blathered on about suction, bronchiectasis, seizures, bath routine and all, amounting to about an inch and a half of the whole nine yards of taking care of Segev. The caregiver whom i expected to meet as well, "had a change of heart" and did not bother to show. I wasn't the least bit upset since realistically now that I've opened my mind to this idea of help I know that there may well be a parade of individuals coming and going in future.
I will always have to be there with Segev anyway. It's a start, we'll get there eventually...
On Sunday a representative of an employment agency for chronic care will come with a prospective 'helper'. This first of its kind meeting might result in having up to nine hours of help a week in caring for Segev. It was made clear to me that authorization for this help was given the go ahead as an extraordinary exception due to the, well, extraordinary circumstances of Segev's care requirements.
On the phone the representative asked me if I hadn't thought about hiring a fulltime caregiver who would live with us in the house, as is not uncommon in this country for physically and mentally compromised children and quite common for the elderly. What could I answer to this women after having just given a brief explanation of the severe nature of Segev's condition, which has been ongoing for thirteen years? No, this is a new idea for me, thank you for informing me of this option?
Yes, I answered, and as soon as I have money to apply such a solution, I will. Oh.
You have to understand that in this country I am not eligible to receive in home assistance from the government insurance department until he is eighteen years old. The infallible logic being that , since he is a child it is only natural that I as a parent take care of him.
Who needs to work? The government insurance will pay me a monthly stipend if I don't work, which should cover my expenses if I decide to live "in a van, down by the river", eating crickets and chewing gum.
My private health insurance is exempt from providing chronic care for Segev since there is a clause supported by the health ministry that if a child is born in need of chronic care, or suffers a permanent condition requiring chronic care in their first year of life, they aren't eligible for chronic care. *shoots self in foot*
The health ministry is responsible for medications and some equipment only, and within those confines they have provided what they are required to.
The fact that I have been brought to this point, where I can no longer do absolutely everything by myself, have had to involve my elder children more and more in Segev's care, limiting somewhat their normal teenage lives has caused me to rethink how I organize the various steps and conditions of Segev's care.
My oldest is going off to the army this summer, for three years at least and so will not be around to help. My daughter's life is fast filling up with responsibilities as a guide in the scouts, tutoring and the regular teenage activities of friends, gatherings, babysitting. I've planned to ask help from volunteers at a local college where a 'special education' program is taught but haven't gotten around to it yet.
Segev's *thirteenth* birthday is coming up March 8!
Hopefully my expectations for Sunday are realistic, especially considering the person is not medically trained, but the bottom line is that I need someone who can fill at least part of the function that my children do on a daily basis. It is often a question of seconds or a minute at most, of Segev being on the couch and me needing a break to go to the bathroom or checking on the stove and the food that's being cooked. Other things like gathering equipment up and bringing it along as I transfer Segev to another room, or to his bath. Double checking to see if I have given all the medications, not forgotten a scheduled treatment, an ingredient in his ketogenic meal. Clearing the way which always seems to be necessary and putting all of Segev's portable things and medicine case into the car, then coming along for the ride to his mother's house. All things I do alone normally, running repeatedly up and down the stairs, two at a time, to as quickly as possible fill up the car while Segev waits in his wheelchair upstairs, alone. The many times I've run back up the stairs to find him seizing, not breathing, hopefully will be a thing of the past.
I haven't gotten my hopes up, but I'm just glad I've realized I need to take this step, before some mistake on my part, from physical weakness or lack of concentration turns to tragedy.
Change is a bizarre thing when for thirteen years of caring for my son Segev change has been the only constant. Treating him, but more directly, attempting to preemptively mitigate problems before they manifest themselves significantly has been like holding on to a squirming wet fish; nigh impossible.
Paradoxically change has always been predictable in one way: the change was almost always for the worse.
moments of doubt - home, to health, or illusion and turmoil
Segev gaining some control over the movement of his eyes, even though so rudimentary, is the kind of change which is unexpected. Segev vomited multiple times each day from January 10th until just a few days ago. Over fifty days of vomiting suddenly comes to an end even though the mechanism of the vomiting, a cough and simultaneous burp compounded by a non functioning esophageal sphincter and a stomach fundoplication which became undone, remains present.
Never mind that I have constantly treated Segev with varous techniques and remedies and mucous thinning medication, because I felt that the irritation of thick mucus in his throat was part of the mechanism. The mechanical issues remain and yet surprise surprise.
Not long ago I went for a consultation with a surgeon because it appeared that the day was approaching when all the physicians who had warned me would be proven correct and Segev's airway would collapse. His breathing became more and more laboured, that stertorous rasping a constant reminder. While in the hospital, Segev unconscious, he had no such breathing difficulty. Strangely since the meeting with the surgeon Segev's breathing has improved and as long as his mouth is supported his breathing is for 90% a harmless, quiet affair with little added effort. The explanation lies in part with my observation that his breathing is worse when Segev is more 'agitated', neurologically speaking, that is, with seizures, yes, but also a particular disquiet he has and here there has been some positive change as well.
Surprises that move in a positive direction are something so strange to me that I really have to wrap my mind around it in order to accept it for what it is. The idea that things can improve goes against my experience with Segev but I admit this may in part be a feeling that has come about from the greatly increased physical effort in caring for Segev. I am not getting younger, the lack of sleep over the years has dug its claws into my constitution and being alone except for my children brings its own issues.
I still do not call upon 'hope' as a motivational force since the stark reality is that despite the wonderful improvements I have mentioned, Segev as a whole is not stable, nor close to a normal equilibrium of healthy and hope inevitably brings with it disappointment and its cousin frustration.
But it is nice to see that his scale of balance has gained a few positive points. While this may not be the swing of the pendulum toward peace and quiet some pray for, I will take it for what it is worth, at the very least to help balance my own teetering composure.