On a morning like this, some might say that coffee is your best friend. On a morning like this, coffee is actually my only friend. Breakfast is aspirin. But still I smile as I hold Segev on my lap after picking him, stiff as a board, from his bed and sit for a moment to catch my breath before making the trek to the dining room where his chair awaits.
I smile because it makes me happy to be able to hold him even for a few seconds of normalcy, without screams, without him being in pain, reacting cheerfully (Segev), stretching his powerful little body and me struggling to hold on to him.
It just struck me only now how strange that is, that he has no conscious control over his body (except sticking out his tongue on occasion and that rare but overpowering smile), lacking any of the proper reflexes and yet he stretches himself, mind you with his arms by his side, but still.
I will raise his arms above his head and say to Segev, "stretch!" and if the time is right he will stretch, smiling, always smiling. But this morning, though it may have been a "stretch!" moment, I didn't simply because I couldn't. On mornings like these, when you have had a very tiring day before and an entire night with only a few fleeting moments of sleep, up to thirty minutes worth at a time, it's best not to tempt further the damage lurking in your body, waiting to spring forth.
On a morning like this one I still have to take care of Segev, alone in the house, prepare his ketogenic meal, his medications, his inhalation therapy that holds no less than five ingredients, all within a restricted time schedule. Don't forget anything Eric, no, don't put Segev's mug with his food in the refrigerator, you heat it up in the microwave.
The fact is that on a morning such as this, when what has kept me from sleeping is not only the regular routine of Segev not breathing due to a mucus plug in his bronchials, the physiotherapy at 3am, turning him over, massaging his stomach, letting air out through his g-tube, changing his diaper or suctioning him. If that were the case I would have been able to hold out for a night of luxurious one hour stretches of sleep, congregating to my beloved five and a half hours total. But last night was a night usually reserved for the three days that Segev is not with me; the nights when my sleeping pattern is the same due to my nefarious enemy that sees me go to bed as late as possible, out of fear.
Fear of pain. Constant inflammation in both my neck and shoulders. Yes, both shoulders so that the choice is not between sleeping on the good side only and then losing circulation but at least being off of the painful side, both shoulders so that the choice is simply, which one hurts less. Right now I can barely lift a pillow with my left hand (I'm left handed) because of the pain. Anti inflammatory drugs exist. I've taken them. Again and again. Natural medicines are my forte so they have been used as well, repeatedly. Rest has been tried, that is to say, no weightlifting (which I need for my back in order to lift up Segev so many times a day) for a period, all to no avail. The simple matter of not being able to completely and utterly allow the area to rest means that for many years now I have exacerbations like this last week, culminating in last night and this morning, where only technique allowed me to pick Segev up out of his bed and caused me to linger a little longer on the edge of my bed, gathering courage, honestly, to move rapidly down the long narrow corridor, Segev's arms flailing dangerously, to put him in his chair.
When you suffer repeated pain in this fashion, the fact that it is bearable pain is kind of negated by the emotional charge that has accumulated from it being a constant nuisance. In other words it is very frustrating. Others aches I have found a way to deal with, my loose ACL for example, which necessitates wearing support bandage if I want to be able to carry Segev up or down the stairs is under control since the necessary surgery would put me out of commission, which of course I cannot allow.
The last time I went to an orthopedic physician because nothing was helping and I simply could not fall asleep for two days from the pain, could not lift or even hold Segev anymore, he said to me two, apparently contradictory things, "you probably caught cold, take some aspirin", and, "you have the neck of someone at least twenty years older." So it's not always easy to get those dreaded medications, so strong that they can do as much harm as good. But you know that when you reach your limit, you grasp at straws. Not so good to have to take care of yourself all the time.
That's what PartnerX told me when she left to move abroad, "take care of yourself, Eric". Oh, OK, good thinking, I'll do that.
So on mornings like this what else is there to do but whine and complain on my blog? There is only coffee and aspirin (and omega complex and arnica and ruta, yes yes) and Segev of course. He's doing alright by the way, average let's say. Over his lung exacerbation this week, breathing is rough but stable, bowels are problematic, troublesome and painful but not hysterically so and he's only vomited once in the last week (at his mothers).
As long as I can stop myself from putting the Coffee in the refrigerator to heat it up, this Morning might actually pass into an Afternoon instead of dragging on to the Night. An Afternoon is of course different in every respect from a Morning like this. An Afternoon means things will be calm and I may actually get to take a Nap, which is so rare that I have to capitalize it. One can only hope that this change will occur.
Yes, I just used the word hope, since when all rational thought has left, hope fills its place with whispers of magic, flirting with your conscious mind like a will 'O the wisp, taunting. A Nap.