We are on week 9 of this nightmare. We have had many really bad days- horrid, horrible days that tested our patience and strength many times- and a few not-so-bad days in between, when we could almost breathe normally and pretend the nightmare does not exist. We have had many sleepless nights and wakeful days of tears and rage, of pain and sorrow. Somehow, we are all still here. We are bowed, beaten, and crumbling, but we have made it this far.
Yesterday, I saw Alphonse’s neurologist and his developmental pediatrician for follow-ups. Friday last week, I was at his psychiatrist’s clinic. His medications have been increased again; Abilify is now at 15 mg/day (10mg in the morning and 5mg at night), Nozinan at 125mg/day, with the allowance to increase it to 150mg as needed, and Depakote ER at 1000mg/day. It’s still a lot of trial and error trying to find the right mix of medications and activities for him. Just when we think we see a little progress, his anger surfaces again and we are back where we started. Yesterday was a particularly bad day. He was awake at 3:10 am and would not, or could not, go back to sleep again. He was irritable and demanding the whole day. My scalp has a new wound from being bitten and more sore spots where the hair was yanked forcefully many times. Everyone, it seems, has new scratches and bruises every day.
Everything is fragile, my friend said to me, and indeed, it is true. Every moment in our lives is a balance of peace and strife, every moment paid for with tears of hopelessness and despair. Many, many times, we are almost without hope. Many, many times, the darkness consumes every single happy thought in our lives.
We are beaten and bowed. Our backs are bent. Our knees are on the ground. And still we plod on, treading wearily through days and nights of sorrow.
All for the love of a child.