Tuesday, April 24, 2018

When you obsess about your child's diagnosis: group therapy


"My baby had an intracranial bleed at some point when I was pregnant, and the brain damage was very large in the MRI image the geneticist showed to us," writes one mom. "At five months old he has an intermittent lazy eye, some difficulty focusing his gaze, and head  wobbling when held upright and trying to focus, but has otherwise met milestones so far. We are trying all sorts of therapies with him. There is one thing I keep obsessing about. At birth, his head percentile was in the 10th to 15th range, and it has now fallen to the 1st percentile. I can't even say the micro...y word. Our doctor suggested removing all labels from his file. Positive thinking is one thing, but facts are another. I am going to be returning to work soon, and need to find a way to stop obsessing over head size and constantly googling about children with micro...y. Help."

I knew how this mom felt, as I also used to obsess over Max's head size when he was a baby. In one of my more anxious moments, I asked the neurologist whether Max might resemble that shrunken-head guy at the end of Beetlejuice, in the Netherworld Waiting Room. I vividly recall laughing through my tears after I said it, and he laughed with me, because we both knew it was crazy talk.

Discussing my anxieties about microcephaly with the doctor and the therapist I saw weekly helped. From the get-go, Max's neuro told us to pay attention to the child in front of my eyes, not the MRI film. While it took time for me to heed his advice because I felt compelled to keep searching for an answer that didn't exist—what a small head size could mean for Max's cognition and future—I finally forced myself to stop looking it up. The only time I thought about it was when Max got measured at pediatrician checkups, and while I still worried ultimately I accepted that Max's head was growing on its own curve. This has pretty much been the story of Max's development: He has proceeded on his own timeline, and in his own way.

Please, share your experiences and insights with this mom.



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