April 27, 2011

Generally speaking

Do we really need to have a post on the general state of suffering that human existance encompasses? Because that's what seems to be the gist of what we want to convey, along with the beauty, when we aren't suffering, the special moments, the kindness and the quiet, when we aren't suffering.
Suffering is of course, in the synapses of the sufferer. A kind of Ipsum Ictus (pardon my pidgin latin).

My life is a rollercoaster ride where I seem tossed around, experiencing the terrifying moments of Segev in a worse than usual condition, as is the case for the last three days, where screams from pain would long have had social services around if the screams were not understood to be that of a child with such severe complications in living, that it puts my own, not insignificant wear and tear, to shame.

Hours of screaming that no one and nothing seems to help. Certainly there is a fugue, analgesic drugs, orthopedic manipulation, massage, medication. Existentialism.
Each temporary respite being reincarnated as another bout of circque de soleil body contortions of pain.

Medications that he takes that help but could just as easily be the cause of a problem.
Medication to change the urine ph. Perhaps he has developed a kidney stone and is trying to pass it? The ultrasound was negative but ultrasound is notoriously innaccurate and the stone could have been too small. Yet he doesn't actuallly scream when he urinates. The downside here is that the pottassium citrate can cause severe irritation of the intestinal mucosa.

Medication to alter the ph of his stomach because his constant reflux/vomiting is eating away at his throat and the leaking gastrostomy hole, but whose main side effect is gastrointestinal discomfort.

The ketogenic diet whose main side effect is vomiting and exactly one year ago I stopped that medical diet for two months because of the exact symptoms Segev is having now, only to have to start it again after two months due to massive increase in his seizures. So I am again pausing the diet, to let things calm down, if his diarrhea, non-stop vomiting and intestinal dysfunction are in any way connected to it.

It's a goddamn mess and yes I find myself, even I, muttering in my head, 'why, goddamn it, why!?'
I don't expect and don't need an answer. There is no answer which will change the pain, both his and mine. Mine from tasking my body beyond its limits in order to care for him and mine for worrying.
I try to take an existential viewpoint; it's all just an ebb and flow of energy, one situation not being intrinsically worth more than another. I seek validation of this point of view but it strikes me as trivial and lacking any feeling. Feeling is telling me, 'this is life!', take the good with the bad, Eric.

Let's see, I've calmed down a bit, at least in my mind, and will make a compromise. I do what I can. I seek out help, research possible solutions, approaching for example the chief pediatric gastroenterologist with the idea to do an endoscopic investigation in Segev's stomach through the already existing hole, thus bypassing the need for general anaesthesia. A good natured frown and a 'no, no, no' was the response.

Segev's nissen-fundoplication released some time ago but may yet be implicated in the vomiting crises that began in earnest in january but the only solution there is to redo the surgery. When I spoke to the surgeon about it and said, 'but, we can't do that surgery again', his face darkened and a slow side to side of his head was the answer.

I'm not even concerned with Segev's new seizure, hardly concerned with the consequences of stopping the ketogenic diet, but am concerned with this appalling feeling of darkness when it comes to relieving his suffering, eventhough I know that, if there is more to be done, I haven't been able to discover it yet.

 If parents understand themselves to be in a position of pain and suffering, then they might elect to give up on a disabled child.  If, on the other hand, they are inspired by their child, whatever his or her condition, they will work to find the greatest happiness in the circumstances.


  1. ((())) to you and Segev both. I keep you and yours ever in my thoughts.

  2. There is "the greatest happiness in the circumstances." It's just so damned hard at times...thinking of you guys!

  3. I'm thinking of you both, as always. The ketogenic diet strikes fear in my heart -- the two times my Sophie was on it are two of the darkest periods of my life with her.

  4. Sending you one of my special hugs xxxoooxxx

  5. I can only offer my thoughts and prayers.
    I was thinking of you yesterday actually after reading your update on FB in the middle of the night (cos sleep is something I don't get much of). I hope Segev settles down soon. Take care of yourself too if you can.

  6. There never seems to be any easy an easy answer. Lots of guessing, praying and hoping for solutions. Sometimes choosing between two bad options. I pray that things settle down for your son.

    I do like Sam Crane's book about his journey with his son...a beautiful story.