At the risk of sounding a melodramatic, something is seriously wrong with my child. The flashes of debilitating pain that seem to strike out of nowhere and bring Nik to his knees, quite literally, are increasing in frequency and intensity. Where they used to only happen in the middle of the night, Nik’s “episodes” are now occurring at random times and frequencies throughout the day. He will be happily playing or singing one moment and a mass of screaming, writhing, head slamming, face-punching pain the next. Thirty to sixty seconds later and my happy child is back —until the next one strikes. And, yes, they are still occurring in the middle of the night, too. I hear rumor that sleep is good for you; I’ll let you know the next time I can confirm that one!
Sometimes the episodes are as frequent as four or more an hour; at last count we were up to about fifteen episodes in a twenty-four hour period. When they occur, they are explosive and startling —especially if you haven’t seen it before. Poor Miss D, our wonderful OT, was beside herself yesterday when Nik had four episodes during his therapy session and playgroup. I think more than a couple of the mothers were frightened by the intensity and by Nik’s need to find a hard surface against which to slam his head. (For the record, we didn’t let him; we kept him on a mat for his safety.)
Niksdad and I have been videotaping and taking copious, detailed notes about these episodes and any other potentially relevant information. We aren’t seeing any discernible patterns yet but we are starting to see some evidence of early warning signals shortly before a full-blown episode hits.
Reviewing the tapes and cataloguing information has been the most heart- and gut-wrenching experience. Worse, almost, than any of our 209 days in the NICU or any of Nik’s surgeries. Back then we were in the safe cocoon of the hospital environment with doctors and nurses at our beck and call. Whatever we couldn’t figure out or soothe someone else was there to help us weather the storm. Now, it’s just us on our own trying as best we can to get the doctors and nurses to listen to us. It’s been an ongoing struggle for more than a year and —at the risk of stating the obvious —it’s getting really, really old.
However, never underestimate the power and fury of the sleep depraved, er uh, deprived. Or the desperation of a frightened mother.
After watching Nik’s symptoms change yet again and the intensity of his pain ramp up even more over the weekend, I called the pediatrician, “Dr. Mary,” on Monday morning and demanded an appointment. Fortunately, we are (too) well known there and it wasn’t a problem. Of course, Nik is usually fine by the time we get to the office so I prepared a CD containing video of several of Nik’s most recent episodes and gave it to Dr. Mary along with a two page typed list of all the various data we’ve collected. Dr. Mary agreed that it is time to bypass all the individual sub specialists who, for the past year, have kept pointing the finger at some area other than their own as a possible root cause of Nik’s distress or, worse, simply dismissing the episodes as “just behavioral.”
Dr. Mary is arranging for us to see the “big guns” in the diagnostic referral group at the children’s hospital we already attend; this group isn’t nearly as photogenic as Hugh Laurie and his gang, alas. They are, however, the ones to turn to when no one can find a specific single diagnosis. And one might presume that, also unlike House’s gang, they won’t misdiagnose and treat for half a dozen things before they find the right answer. Jeez, if I’d known a year ago that this group exists I would have pushed to see them sooner!
So, we are now waiting for an appointment —hopefully sometime within the month of November. Dr. Mary said if they cannot see Nik sooner then she will begin to order things like an MRI, another round of comprehensive blood work, and any other possibly useful diagnostic tools at her disposal.
Meanwhile, we wait. And hope. And pray that it is none of the things that have been mentioned in passing as “things we need to rule out.” Scary things. Life altering things. Yes, potentially more so than even autism.
I wrote in a recent email to another mom that I wasn’t “going there yet.” That was before the bottom dropped out this weekend. Somehow, I’ve landed “there” and it’s dark and scary and lonely. Watching Nik struggle and suffer so feels like watching an accident in slow motion and not being able to do anything to stop it. I have good moments when Nik does and not so good moments when he’s in the throes of pain. Then I take myself off to another room and fall apart. Then I pick myself up and carry on; I have no other choice.
I’ve taken to heart much of the support I received in response to my previous post. I’ve begun to carve out time for me where I can; I’ve resumed my twice weekly sessions with a trainer at the Y and set some goals to help me stay on track with taking care of my body. That helps with the mind as well. I’ve even let my mother do my laundry!
I’ve actively taken the advice of Redhead Momma and started to reevaluate everything in my life —to weed out the things that just don’t work. It’s been so hard to do but I have stepped back from some of the activities I’ve been involved in having to do with advocacy and helping to create a network of family services in my state. I’ve been working with a very dedicated group of parents for over a year now; we co-teach university courses in education, do professional in-service trainings for teachers, therapists, medical professionals, social workers and anyone in our state who may impact the life of a child with disabilities. It has been richly rewarding work and I have grown tremendously as a result. However, when I began the work Nik was in a much different and better place with respect to his health. Now it is time for me to take that outward flowing energy and refocus it inward on my immediate family.
It is difficult to let go of the “shoulds” in my head which make me think I am letting people down. I wonder how many of us live our lives out of those places within, fearful of not being “enough” if we don’t put ourselves out there in a bigger way. I have to remind myself that there will always be a time for me to jump back into the fray. That taking care of my family, especially my strong yet still-fragile child, is the most important thing I can do right now. It is my way of making a difference in this world.