January 16, 2016

raw update: nothing is the same

January 5th
It's difficult to know what my son is experiencing right now. Every aspect of his condition has worsened dramatically over the last month. The last week has been hell. While we bombard him with multiple pain medications, it's true that he suffers much less pain.
Using opiates is not a new idea but one I've always vetoed until recently, relying instead on standard pain meds and cannabis. None of which significantly impacted his severe pain. The fentanyl does that, with reasonable consistency and efficacy. But there is a price which we are all paying as Segev's condition continues to deteriorate.

January 09, 2016

UPDATE

Once again we find ourselves in the midst of a true crisis. The kind where you simply don't know if things will sort themselves out.

There are many different kinds of seizures, but the ones you fear the most are the brutal myoclonic tonic ones that ragdoll your kid with such a violence, that your heart breaks looking at it. When this happens despite all the medications, the CBD and the Cannabis, despite all the careful chest physio, despite the Fentanyl and analgesics, as though the hand of God grabbed your child by the scruff of his neck and went to town with a vengeance.

January 07, 2016

I, the aging caregiver: Introduction





Aging is a relative process. Being vain enough to think that I have aged well, until I look in the mirror, has long ago been replaced by the realization that the accumulated mileage is no longer covered by warranty. Coming up on eighteen years of caregiving for my son, it hasn’t always been easy, heck, it’s never been easy. If not for his smile and the twinkle in his eye when I sing to to him, (well cackle like a hyena is a more apt description, but he loves it!), I wouldn’t have been able to give one hundred percent. 

Of course, what was one hundred percent a few years ago is pitiful when compared to today. It’s not much of a paradox, the fact that the more you give, the less you have to give. You need to pace yourself for the long run, but to begin with you cannot know how long that will be and so you give it your all, hoping the long run will teach you to balance your own needs in face of your child’s. I never found that balance, and yet in part because of that, my son is still here.