There was a short conversation with the palliative physician who joined the team about six months ago. Going forward, after the catastrophe of attempting to control my son’s pain with a variety of opiates, putting him at death’s door yet again, he said he was running out of options. Fortunately I was able to increase his three other pain meds and add a fourth, which is helping Segev considerably.
But today is another such day where he is suffering signifcant pain. The last week has been another episode where he is vomiting frequently, his lungs are heavily congested, there is an increase in seizures and drops in oxygen saturation and a hard battle with an infected gastrostomy site, despite the constant methods of care. Today is another day where I need to decide whether I go to work or stay by his side.
The other thing that the physician said, more a rhetorical question, was “You know that what you are doing is utterly exceptional, right?” He continued, “The way you, his mother and his brother and sister rally around Segev is amazing. I’ve never seen anything like it.”
Since his birth, in order to give my son the full attention he deserves has meant cutting my work week from six days to just two. And consciously working to create an environment where his brother and sister became competent in providing practical assistance for all of the varied and complicated issues that are dealt with throughout the day and night, was no small effort. But this has paid dividends tenfold so that Segev is still with us today. Whether simply providing suction or venting his stomach or, as the case was in March, physically holding his airway open while, gutted with fatigue, I had to calculate the proper dosage of sedative to be given subcutaneously, they are there for their brother.
Being able to work only two days a week in my profession as physical therapist, with some degree of irony as a specialist in pain management, very quickly brought us to the poverty level. At that point, beyond what life with my son brings, be it chronic sleep deprivation, back issues, tendinitis, memory loss and clinical depression, your world becomes even smaller. And yes, quite a bit more simple. There are no extracurricular activities for the kids, no new shoes, dinners out or, as often is the case, birthday presents. With time those things cease to matter. Still, while able to provide a roof over our heads, the sting of not giving your kids a ‘regular’ upbringing becomes surprisingly more potent. They have though, become used to it; it is their ‘normal’.
With his worsening condition over the years, punctuated by an endless nightmare of life-threatening crises, there are no trips together and even walks around the village are out of the question. With Segev requiring some kind of action to be taken every 30 minutes, rest is impossible.
Obviously this obsessive behavior of mine has had negative results as well. The stress everyone lives with is through the roof. Our lives have been put on hold, though I’ve always pressed my other two children to forge ahead, study, go out and pursue their dreams and they are in the early stages of doing so. Perhaps a little later than others, but what matters is that they have their dreams and thankfully tremendous talent as well. None of that has been completely stymied, for which I am ever so grateful. Perhaps the perseverance present in our lives has even given them a strength that otherwise would be lacking. I can only hope this is true.