When the woods just keep going

The last six weeks, although they included a much-needed and mostly successful vacation to visit family, have been difficult. New medical issues have emerged for Monkey. Repeat testing has revealed that old issues are not resolved. Whereas a year ago I thought he would soon test out of early intervention, we are now hoping he’ll qualify for the local developmental preschool next year (the alternative is homeschooling and drop-in therapies).

For the first two years of Monkey’s life, everyone was either asking me when he would grow out of something or telling me that he would. “When he’s in preschool, all of this stuff will just be a memory,” said one well-intentioned home visitor. That is now very unlikely to be true. Specialists were eager to discharge him from care. We are now getting referrals to go back to those same specialists.

In other words, not only are we not “out of the woods,” but I am giving up on being out any time soon. Better to accept that the woods are where we live now, build a cabin and get as comfortable here as we can.

Today began with a semi-urgent pediatrician appointment that resulted in two specialist referrals, then proceeded immediately to a therapy appointment. Monkey just had time for a nap before his second therapist of the day arrived. While that therapist was there, the pediatrician called to ask some more questions and fill me in on what she was up to. Not every day is like this (thank God) but too many of them are. He has three more procedures under general anesthesia coming up in the near future. He’s been under six times already.

I had to laugh (inwardly) a little today when the nurse’s assistant at the pediatrician’s office asked if he was taking any medicines. “Yes,” I said, and she asked, “What’s he taking?” She didn’t have a pen or paper. I guess she thought she would be able to remember. I launched into my list of his medicines, and she apparently decided just to let the doctor deal with us. This plus a tasteless joke I made to one therapist about having another NICU baby in order to procure the best nasal aspirators was my humor for the day. But it’s part of building the cabin, settling down, accepting. This is where we are.