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.
|back home after the last hospitalization|