Report from the ivory tower.
What do you say when the morning says good day…
That is the new verse I sing to my boy Segev in the morning in order to try and add something familiar, a connection, that will help focus his mind and even my spirits from another night of fitful, abbreviated sleep. In other words – a good start to the day.
Because of his needing complete sedation last night at the hands of diazepam he slept quietly, monitored, but still slightly moaning that aching moan of poor airway clearance. When I woke again it was to see that the monitor’s probe had fallen from his finger but the alarm had not sounded and I cursed the machine and all the other ones I had before, that do exactly the same thing: fail when you need them most. Explanation? None.
And now as I write this Segev is taking his morning inhalation therapy with medications to help keep his lungs more open, the machine having degraded to the point where a tractor in my livingroom would be a more welcome sound. He coughed - so naturally I jumped up and suctioned him. Back to writing –wait a big sneeze, always bringing up stuff - jump and suction. His raspy breathing a constant, a continual reminder that if I just snap my fingers Segev can benefit from one more operation , the tracheotomy, with all its own glorious issues.
So Segev slept because of the sedation but was awake when I got up for the final time, to start the day.
What do you say when the morning says good day….
On a normal morning, after both he and I have had little sleep, Segev regularly not sleeping at all, he reacts to my presence. If he is healthy, which he has been for a little while now, unless suffering from pains, both known and unknown, severe enough to make him cry, on and off for many hours each day means he is unhealthy, he always smiles when I come to change his nappy, or turn him to his other side, suction him and especially when I say, ‘let’s get the day started, Segev. I’ll put you in your chair.’ When I pick him up he can give a big smile and rarely, I mean really rarely, he will even vocalize a duo-toned moan. Because of his catastrophic disabilities and fragile medical status, I am very grateful when he is able to muster such a reaction.
When the time has come to get up to start the morning routine I no longer listen to his breathing sounds and think, ‘Thank God he is still alive’. The multitude of days which have woven this cloth of his life, while tattered and shoddy, has held together and provides a small yet measured degree of comfort. Enough so as to let go of that anxiety born of endless hospital stays, seizures, low oxygen saturation and days and days of unconscious stupor, not reluctant to react to stimulus but immune to any reaction.
What do you say when the morning says good day…
What do you say when the morning says good day…
But beyond that correlation with ill-health, seeing his face light up with a smile of recognition in such a way is not a constant and many other times he seems to ‘fade’. As I am constantly speaking to him, treating him, feeding him and so on, he rarely has an opportunity to fade away. But at times, especially if I am retrieving him from his mother’s, where the curriculum is somewhat less hectic, it might take Segev more than a few moments to recognize me. His mind has its own cadence and just as anyone, left to their own thoughts, can sink into revery, his convoluted, truncated mind goes a little deeper into the rabbit hole than most.
Still it feels like an affront. I try to coax him out of it, usually with success. But when not, a twinge of fear always creeps up. Like that persons who likes to give you a start just for fun and each and every time they succeed in startling you even though it’s been done a thousand times previously. A twinge of fear that speaks of the future when his reactions will become less and less, as we had for six weeks at the beginning of the year, where the neurological sinking was so profound and continued so long that I started to believe we would never get him back.
All this speaks of a deep connection; some might feel too deep a connection, to his condition. A striking awareness, attention to detail and the furrowing out of most possible problem scenarios, real and imagined, because of this devolution of mind and body which Segev was saddled to pass through life with.
The brain damage is severe, the ailments and illnesses bountiful. He survives because of many different elements. His strength is titan. He was brought back from death by medical means. We work to understand his condition and needs, sometimes pitifully so. He is loved. He is lucky. Hard work, perseverance. Many different hands, mostly his parents and his siblings, are constantly working to make him comfortable. All this care, while it could be greatly expanded upon if the social support were to exist in this country, provides my son with the lion’s share of his existence because he has no ability to communicate any formulation of thought or opinion which might exist.
So I remain in this conundrum of staying by Segev’s side as much as is possible, while finding small moments of happiness with his regained consciousness, struggling to find outside of this situation a place to exchange ideas, to express other aspects of my nature besides caring for others, to build relationships which as we shall see, is so important, which can help to strengthen me and thus my ability to accomplish the things which I do both out of Giri and Ninjo.
This is what I wrote about Claire in the book, ‘Little Jōb’s book of broken poems’: “Claire Roy is an important Canadian blogger whose posts form a pantheon for parents of severely disabled children. Often delving into deep thinking about what is the right way to look at disability she always writes in an accessible manner and from the heart. Her daughter, Sophie was not born with her severe physical and mental compromise but rather acquired it due to a stroke in the brainstem and subsequent medical complications.” [Her blog is no longer available for general viewing]
Recently she has entered a new stage in life which includes a paradigm shift that made me cry from happiness for her when she began to write about it both on her blog and in personal communications. Like many things that I admire her for and why I called her a pioneer, as a parent and fulltime caregiver for her daughter, is that she succeeded in instigating positive changes to her lifestyle that includes more autonomy for herself.
She is completely dedicated to her daughter and while she has no need to prove such, has shown just that again and again. She is an advocate for ‘disabled children’s’ rights although I would venture to say that she would regard it simply as an issue of ‘human rights’. But in order to stay sane as a caregiver and parent day in day out, it only stands to reason that we are allowed some miniscule venue through which to express our own needs. The crushing weight, and I do not use this term lightly, of chronically caring for a severely disabled child must at some point be balanced by regaining a foothold, actually more akin to a toehold, of responsibility for ourselves. To go out, perhaps to work part time, to see a movie or go to dinner, to be able to invite friends over. But most things, all taken for granted by those of us not in this precarious situation, are not feasible. Claire though, carefully and in small measured babysteps has been able to implement an idea where she can regain a semblance of normal life while still, with no doubt whatsoever, maintaining proper care for her daughter. This is a huge accomplishment and should be applauded, yes, cried over. A good part of this is possible due to practical changes in her life, some of it, undoubtedly a shift in a way of thinking as some of us are stuck in the ‘catastrophic disability’ mode, until we are given enough time to find a new working balance of living our lives. A good part of Claire’s attempt at regaining a healthy, happier life relies on the fact that her daughter, despite catastrophic disabilities is able to thrive. For some, looking at her they might find pity the appropriate response, invariably comparing her abilities to enjoy life with their own, but such ignorance really doesn’t bare mentioning, so I’ll move on.
Part of Claire’s success in being able to provide such devotion and care for her daughter relies on her daughter’s ability to laugh, get upset, read and write and speak of her desires and dislikes. There is communication and despite a long, long history of medical issues, there is a vibrant life that many parents, such as myself, can be very jealous of. So isn’t it odd, that with all this going on, she would be undergoing at present an affront, an attack on her ability to continue being able to find this more natural balance of care, where that symbiotic relationship between her own wellbeing and her daughter’s is so apparent?
Yet that is exactly what is happening. She is now being subjected to legal proceedings which are designed to hamper her ability to go out, even work, in measures which most people would find simply too limiting but which to us, parents/caregivers of extremely disabled children is a rush of fresh air and significant freedom. Not freedom from providing care but the ability to relate to the rest of the world in a way which finally benefits our children. Exchange of ideas and recharging of the batteries. Don’t the people involved understand that if Claire were to do anything to jeopardize her daughter’s wellbeing it would come back to her in the form of medical complication and emotional stress and then prevent her from having any kind of physically and mentally replenishing activities?
She has been at this for over ten years. It’s not as if on a whim, without a proven track record she haphazardly decided to paint the town red. She simply wants to be able to touch on those things that we all took for granted before we took on this role in extreme parenting, and which enable her to provide the best continued care for her daughter in the future.
Her daughter is probably as medically stable as she could ever be. There are fears that if Claire isn’t around every minute of every day, disaster will strike. Well, you know what, disaster will strike. But not necessarily for her daughter. It could happen to many people, the parent included. Disaster can strike her daughter while she is there with her, as has happened many times. But Claire didn’t eventually replace the brain shunt in her daughter, physicians did. Her role there, for example, was limited in such situations to observation and or the application of medically sound protocol, such as with the Sodium dump syndrome. Yes she knows her daughter best, but that doesn’t mean that at the first appearance of agitation her conclusion was “brain-shunt!.” No one would.
Most issues, as I discussed above concerning Segev, are cryptic at best. Most are not serious, but we worry that they are. The best we can sometimes do is communicate our concerns, our theories to others who, if we are really, really luck, will have some vague notion of what could be wrong, even though they have no real curiosity or interest in investigating ‘hunches’, ‘guesses’ and the lot.
With the difficult issues of medical complications known, as far as is reasonable to expect them to be known (and in Claire’s case, known far beyond what is reasonable to expect), communication by competent caregivers is an accepted and reasonable scenario. Those assigned to her daughter are legally, professionally and morally bound to communicate with her in the event of any situations that require extraordinary attention. In short, in any form, help is a phone call away.
Seizures, apparently form a part of the concerns for her daughter’s well-being. There are many different kinds of seizures. Segev suffers from several of them. He has had over 500,000 seizures so far, although a neurologist might argue that some of those perhaps didn’t have their origin in the brain and so technically are not called a seizure. Through the years I’ve researched seizures and their dangers frequently. Segev’s many cases of his seizures progressing to Status Epilepticus, which can be a life threatening situation if left untreated, made this essential. Never once have I come across a discussion of seizures where it is stated that seizures have killed someone. Not even in the discussion of SUDEP (sudden unexpected death in epilepsy) has the actual seizure activity of the brain been implicated in the person’s death. It has always been cases where individuals were alone, fell and hit their head or suffocated because they were alone and unmonitored at the time. Segev even suffered from central apnea in the past. I remember many times when he simply, quietly, stopped breathing as I was looking at him. Harrowing experience, right? Very. When I took Segev to the cardiologist to discuss the issue he was unperturbed. “But you shook his chest and everything came back to normal, right?’ he said non-chalantly.
Control over these situation is certainly something we want and need, but cannot have in an absolute way. Is it unreasonable to assume that a person can care for their child twenty four hours a day, mitigating all but the most difficult and cryptic dangers that might manifest? No. For every hour, for every day, for every week, for every month, for every year? Yes. That would be an unnatural and unhealthy situation for all parties.
I’m riled up about this issue not simply because I care about Claire or that I wish to show some sign of solidarity for its own sake. I think it’s important to show solidarity because the notion that parents involved in extreme caregiving for their catastrophically disabled children should seek out every opportunity to find a normal healthy balance to their lives is not advocated willfully enough in society as it is. But to imply the opposite? That we should limit the parent’s freedom until they have been forced to comply with some made-up notion of what is truly beneficial for the parties involved, is simply criminal.