My daughter is coming home. At age eighteen (having finished secondary school with high marks) she was due for her army service, but since it is possible to postpone the induction by a year through a special program that allows one to gather experience, often in the form of volunteering to help the community. She chose to work as a ranger in the nature reserve at Ein Gedi which is located on the shores of the dead sea.
She loves the desert and extensively photographs its surprisingly abundant and varied wildlife while she spends her days, often alone, supervising one of the several gorges that hold the natural springs there. It's a paid job as any other but she was one of few finally accepted; in typical fashion she knew exactly what she wanted.
The year in the desert is due to end in two months but she is coming home early. This was a dilemma already in the early part of the year because Segev was so very ill for months. She took a all of March off (Her brother Shoval did the same in April, requesting special leave from the Army) and stayed at home to assist in the care of her brother and which I was absolutely in dire need of. After four months of lung infections that simply would not go away, Segev finally began improving towards the end of April. Well at least his lungs did. As mentioned before, pain, to put it mildly, has become an increasing problem due to the deterioration in his spine. In short it is collapsing, pressing on nerves which, if you've ever suffered a herniated disc, you'll know too well how debilitating such pain can be.
In addition Segev's daily episodes of vomiting persist, in part due to the spinal compression but mostly from the excessive amounts of phlegm he produces (bronchiectasis from repeated aspiration pneumonia) in combination with his troubled breathing wherein he 'gulps' air consistently. This is a kind of trade off sinceI don't want to lose him to the tracheostomy surgery, (the "beginning of the end for Segev" according to several surgeons and specialists). He no longer has a "normal" regimen of seizures, in the past up to a hundred a day, now a bit less due to the CBD, and the need to additionally sedate him with valium (diastat) either for pain or his cluster seizures has become the new routine.
|Mother in the Dutch documentary "Mensen van morgen"|
Despite all this, in view of the very, very difficult and frightening months on antibiotics and the concern that, this might be it, (considering that Ohtahara children find their end through 'respiratory failure', 99.8% of the time) I told her my intuition is that Segev would actually recuperate, as best he could and we would have a few good months ahead of us. The same daughter who insisted on going to see my mother in Holland, dying of ALS. Since I couldn't pay for her airfare so she worked in a shoe store, walked dogs, babsat and paid for it herself all while acting as a scout guide in the local chapter and studying for final exams.
|Dead sea from Noa's apartment|
My belief placated Noa somewhat and she returned to her beloved desert, accruing a large swath of experiences, anecdotes and especially, photographs.
Is it impolite to overstate the obvious? That I simply can no longer function at the level needed, to help Segev.
Nowadays, as I fling myself out of bed and take the two steps towards Segev I am on shaky legs. It used to be that I would find myself standing over him, either suctioning (most common), compressing his chest or holding down his flailing arms as he seized, before I even knew i was awake. But now I am up, standing over him and I don't know why. I have found myself thinking, 'Suction? Yes, maybe that's it. Where's the suction. I know it's right here. Why can't I see the suction?!' It used to be, though hard to believe perhaps, that I would wake up with a start and jump up, moments before he would start having a seizure. Now I dimly hear the alarm of his pulse-oximeter going off. And going off. I doze off again, finally waking to the realization that I had previously dozed off, while the alarm was going.
And now she is finally coming home, a few months early and I am very relieved that she is. Last night was a good example of the present state of things. The increasing difficulty has to do mostly, I believe, with the accumulative effects of eleven years of sleeping only five and a half hours a night, on average, in stints of only thirty minutes. Segev's oxygen level dropped to 77% indicating that his left lung had completely closed again. Despite humidifying the air in the bedroom, which helps a bit, the physical compression of his lung from his intestines (due to paralysis of his left diaphragm) and having to occasionally lie on the affected side, complete closure is a daily occurrence. Usually this can be resolved in a few minutes of physiotherapy, repositioning and ventilating him with an ambu bag.
But this time I felt panic setting in and time seemed to stretch out well beyond reason. Finally I had to settle for a measly 92% and try and get some rest.
|Spinal manipulation and massage after his shower|
When my daughter is home with me she must sleep on the couch since in our small apartment there is simply no room. And while she is one that it is normally nearly impossible to wake up by the way, now wakes to my cries of frustration (rare though they may be) bringing her to my side. She is familiar with the techniques needed, the process followed, to temper Segev's middle- of-the-night crises and acts automatically or with a word or two of direction. My eldest, Shoval is in the next room but he is susceptible to the ill effects of disturbed sleep and rises very early for the two hour commute to his base every morning.
|Segev at age three days|
Noa was just three years old when Segev was born, so she has seen all of the best and worst in his life. I remember taking them, against the adamant protestations of the physician in charge, to see Segev in PICU, in critical condition and barely recognizable after multiple cardiac arrests from emergency surgery, so that she could kiss his hand, as she was so wont to do, for one last time.