the lay of the land, the map of isaiah

lay of the land: many times this week i have sat before this computer, fingers poised, as the words tumbled over one another inside my head, as they do even now. these things i encounter this week, i have known before, and will forget again. that sometimes there are no answers however much i may believe there should be, that however much you love another you will never truly have the same experience, be it the taste of vanilla ice cream or the vision of your child mid-seizure. many times this week, i have been thankful for the ability to read, as i commune separately together with joe on the completion of crossword puzzles, gratefully read rilke's intuitive words on the great and terrible, the abundant beauty of life and find in barbara ehrenreich's words regarding the cult of positivity a sense that in my times of rage i am not alone. all week i have been asking questions, non-stop, of everyone, because they occur to me, because i am interested, because i feared slipping into a puddle on the floor if i stopped asking. yesterday, i stopped asking. and i slipped into a puddle on the floor of ronald mcdonald house. but as water must, i rose from the puddle, and remembered again that it is good for me to let go, just as surely as i will go through the cycle again and again, though i hope each time the distance between the forgetting and the knowing will shorten.
map of isaiah: today mary beth (our good friend and isaiah's longtime and talented icu nurse) admitted that isaiah has truly thrown her and the doctors for a loop this time. this is not something mary beth has ever said before. there are good reasons. neurologically, isaiah has answered a few questions about his age and colors of objects. this is promising, though he needs to be fully awake before a full sense of his capacity is achieved. his blood pressure continues to be high for unknown reasons, causing him to be dusky blue and mottled. he was started on a sedation drip, bringing his iv meds to twelve, to see if that would bring his pressures down, but more was added as he becomes more agitated. it didn't, so they increased his diuretic to try and get rid of the extra two liters of fluid the little guy is carrying, to see if that brings it down. This in turn, lowers all his electrolytes, which can effect his heart/brain function, so they're trying to rectify that. His liver numbers, including the factors that affect blood clotting, continue to be off which has led to severe bruising all along his back and blood pooling behind his intestines, which has caused his stomach and intestines to stop working for the time being. he has had blood, etc. cultures sent daily as he continues to spike fevers without a clearly visible reason, though it is postulated that the blood in his brain and/or intestines could lead to infection. he's currently on three antibiotics, though he continues to spike through these. thankfully, we added some a second sedative to the mix today, which is allowing him for the first time to rest without agitation. he continues to be trached and on the ventilator, and is dropping his oxygen levels when he's off of it, so though i laughingly tried to tell the docs the trach/vent life is not my life anymore, it does seem that he needs it. he's itching severely due to the pain meds, so they started him on benadryl, which he had an allergic reaction to before they switched him to a different anti-itch med. the seven services, and growing, that see him each have their own priorities, and they don't necessarily mesh throughout the day. perhaps you can see why i puddled on a saturday afternoon, why, though excited by isaiah's signing yellow in response to a question, i am not yet allowed into the cult of positivity.
thanks to all of you, known and unknown, who hold my spot.