Finally! There is some forward momentum toward diagnosing Nik’s mystery ailment. It seems to have an awful lot of the hallmarks of Intracranial Hypertension and yet there is also still the disturbing immunological component which has waxed and waned for more than a year now. The chronic, low-grade fevers and mild infections, the low immunoglobulin followed by the “robust” response to immunizations (as tested by various blood work for antibodies). The ear and head pain, the eye discomfort, the constant swollen glands without any active infection. The constant nocturnal awakenings and episodes of excruciating pain —where once Nik slept peacefully, painlessly for ten to twelve hours a night without fail.
You can understand why we might be a tad tired and frustrated, anxious and ambivalently hopeful about finding an easy or simple answer. Nothing about my son has ever been “routine” or straightforward. Call me jaded but I don’t expect that’s about to change any time soon.
This is why I have such mixed feelings about the MRI now scheduled for Friday morning. Yes, as in the day after tomorrow. (Have I mentioned lately how much I appreciate Dr. Mary? She called in some favors to make this happen so fast!) Either way it turns out, it’s not good. Stay with me for a minute, here…
If there is a mass or lesion or some other visible anomaly in, on, or near Nik’s brain that’s clearly not a desirable thing at all. In fact, that’s got to be one of the most terrifying things for me to think about. Yet, the alternative —the idea that there is no visible, discernible cause for all his excruciating and unpredictable pain? I’m not sure that’s any better. The need to find answers juxtaposed with the need to find “normal.” It just isn’t reconciling in my poor brain. Is this some sort of cruel cosmic hoax? WTF?
What’s a mother to do? “Dear Heavenly Father, please let there be a tumor in my four year old’s skull…” versus, “God, please don’t let them find anything wrong in Nik’s brain (which means they don’t know what is causing the pain)…” I can’t reconcile myself to either. If I thought I felt lost before, this is a thousand times worse.
What would you wish for if you were me? Ok, besides normal MRI results and the complete cessation of any and all of Nik’s mysterious and debilitating pain? I only wish my questions weren’t rhetorical or my dilemma hypothetical.
Keep on praying, please? For what I can’t say —the best possible outcome, I guess. Whatever it looks like.