Counting leaves

In answer to Claire, about feeling sorrow, not just for our children's altered outcome but more so sorrow for the lives we have had to leave behind as permanent full time caretakers of those children, I feel threatened.
If I show my sorrow, it seems the perception is ingrained in me to believe that then I am feeling sorry for myself.  I certainly wouldn't want that and yet if left unchecked this process could spiral towards having a breakdown. The reaction then would certainly be, "well of course, who wouldn't crack under so much pressure?"

Yet If I stay the course or at least don't allow the cracks to show in the foundation of my willing involvement in this hurdy gurdy healing construct, then people assume the load is not all that heavy.

This was made clear to me the other day as I was getting the mail, which I do infrequently, where I bumped into an acquaintance from the village; a woman who had taught my son in elementary school and whose youngest son I had treated, even saving him from surgery which the experts had deemed unavoidable. She asked me about my eldest and how crazy it must seem to me to have sent him off to the army.

As I formed my answer I was filled with an intense self righteousness, thinking about the village I live in, with its tightly woven community and instant communication of trouble and intrigue. It struck me hard that she wouldn't ask about Segev and before I could answer her I pulled up a memory from back a few years, apparently in order to gird my indignant response, nostrils quivering.

When it was at all possible I used to undertake the serious endeavor of going out for strolls with Segev through the village streets, for him to feel the environment, breath some air and catch a little bit of sun. Those walks were arduous and fraught with dangers as, halfway from home, Segev would choke or seize or begin yelling from pain but I tried not to give up on them until it simply became impossible. The second true reason why I went on those walks though was out of pride. I was showing them Segev. I was showing them determination. He existed, in his troubled and tortured way but also with smiles and a clear calm as he reacted to the direct sunlight.  

There was an elderly gentleman, in his 90's, who I had given a ride once into the city, who had been a boxer and demolitions expert in the army. Living alone, waiting to die, as he put it. We would have long talks, sometimes he would join us for a hundred meters or so, but then I would turn around and help him back to his home. He invited me in and showed me how every day he would count the leaves on his favorite plant in order to see if his memory was fading. I wondered how he could be sure that the next day he would remember the same number since he didn't write it down but he spoke with such certainty that I believed him. The last time I saw him he said two things to me. "This house is no good for you son because of the stairs" he said, referring to his own house, and he told me I must buy a plant for Segev and show him how to water it, let him get a feeling of what it is that he, Segev, was taking care of something. I tried to protest that Segev couldn't understand but he would have none of it. "Never you mind" he said. "He'll understand what he'll understand. The important thing is just to do it."

He forever mourned the loss of his son and ached to finally join his wife, getting his wish a few years ago. Segev's plant is still with us. It's barely alive now for the umpteenth time and I'm hoping I can get it to make at least this one final comeback. I place a glass in Segev's hand and together we raise it as I explain about making the plant grow. Since Segev's level of consciousness is such that usually when it came time to water the plant he wasn't aware of anything in his surroundings I ended up watering it rather over zealously .

So the woman from the village had asked me about my eldest going into the army and I responded, as I said, self righteously saying, "my real worry is for my son Segev." 

"Well," she said "if that's all you have to worry about you are one lucky man."

The obvious struck me, that she somehow had lost the memory of conversations about Segev, forgotten my eternal absence from all gatherings, communal holiday celebrations, sporting events, the swimming pool, Scouts and school meetings and so on and so forth. But this did not spare her from a mild tongue lashing as in one long breath I summarized the delicate existence that Segev boldly fights for.  

"....uh..well, that you should just know good health" was her response but I had already turned away, before I would say something inappropriate and headed home.

One can argue, without the need to go into detail, how perhaps working harder even to educate about Segev's frailty might have resulted in a different social situation. While I approached various people, both officially in their function as social advocates and unofficially asking for help with housing, the feeling that I would be perceived as "feeling sorry for myself", or worse, "not able to make do" has simply been overwhelming in its presence.  Even stranger is that I simply don't feel sorry for myself, truly giving thanks for what I have because I know it could be much worse. 

Tying in to Claire's post on sorrow, it would seem to me that if I had been able to express more of my sorrow, to close friends or family, instead, in horrifying fashion, having to share some of it with my children, I might feel a bit more certain, a bit more confident in dealing with the infinite little issues that crowd everyone's daily lives, especially those who do not function as caretakers of physically and mentally compromised (PMC anyone?) kids. 

Having family at a great distance and having seen "friendships" whither away adds to this sense of isolation. Isolation is really the core driving force behind sorrow, isn't it? Having had a partner who makes many promises of help, of easing some of the burden financially turn her back on you,...well, I won't admit to being bitter but certainly heavy disappointment can also be a source of sorrow.

I think I expressed my stance on sorrow when I responded to a prior post by Claire with "And I pray that I am not losing my mind too much, so that it will affect his treatment, even as I watch myself getting older."    

Yet I am not quite certain but it appears to me that out of self preservation, in order to combat this intense feeling of sorrow, I am trying to reevaluate the intensity of my role in caring for Segev. But I am running into such resistance on my own part that only a state of limbo is the result where nothing becomes clearer, no decisions loom on the horizon. 

But now I remember again the old man, and see how that memory did not come up randomly at all. 

I'll be counting the leaves each day, seeing how the next day things will be the same and I'll understand what I understand, most importantly, just doing it.