In exactly two weeks from today, Javin will be having neurosurgery to remove his entire left temporal lobe, left amygdala, and left hippocampus. I haven’t had much emotion about the surgical procedure itself, not only because I trust in the competency of the Cleveland Clinic surgeons/his neuro-team, but also due to a latent reactive process that I’ve had since I was small. I don’t respond much to traumatic events until much later, internalizing my emotions until they come out in smaller, obstructive responses or physical ailments. Sometimes I feel nothing at all, robotic in presentation and seemingly cold or distant. Inside, however, and due to young childhood defense mechanisms, I battle chaos and keep it at bay so the control I desperately crave can sustain and delay fear, desperation, and helplessness.
I fear that my child won’t be the same person after his surgery.
I fear that he won’t recover reasonably enough to maintain the meager life he has now, let alone enough to lay hold of a better one.
While I am grateful, even excited, for the opportunity to achieve seizure cessation or, in the least, lessen their gravity, in his lifetime, there remains the issue of his cognitive decline. We were at a catch-22 with this dilemma, as the epileptologists told us that he would have complete lack of cognition within ten years without the surgery. The locus of his seizures, combined with their frequency, a lesion, and the degenerative nature of epilepsy in the left temporal lobe, would mean by age thirty Javin would have almost no cognitive capacity, memory recall, or mental comprehension. His neurological decline over the past seven years has been tremendous and attests to this progress, so their opinions are founded and evidence-based. The flip-side is that combined with his Aspergers and current cognitive capacity, we can’t predict how the recovery or progressive cognition will occur. He will experience delayed word recall and memory issues for a few weeks or months, but studies show that it can take 2-6 years to regain full capacity prior to surgery. This impairment can affect his ability to work, regardless of how many seizures he has, but the good news is that in all study subjects any further decline was ceased at the six-year mark, with 75% at the two-year mark.
Statistics and outcomes aside, there are many complexities in raising an epileptic, let alone one with Asperger’s, then add cognitive decline on top of that. For those who know Javin, they may remember his childhood savant nature, his brilliance, and cleverness. While the lessening of intellectual capacities may be lamented in a world that worships those attributes, what hasn’t been lost, and perhaps has even been emphasized and elevated, are Javin’s human qualities. His beneficent, serving nature is not naive or simple-minded, but untouched by the ebb of his neurological conditions. In ways, he is mightily intuitive to need, and for an Aspie, emotional intuition is a great gift. Even without perceptiveness, of which he is surprisingly adept in areas, he is willing, and this serves him most to serve others, which is far and wide his favorite thing to do. No surgery will affect his philanthropic tendencies, as I don’t believe God would allow it. Javin is one of the ‘least of these,’ (Matthew 25:40), but he’s never seen himself that way. Somehow, even if he had an I.Q. of 45, he would find a way to affect those he cares about, even if it were just in our memories of how he’s lived his life bravely and selflessly, barring Aspie OCD and buying a lot of swords.
So, we will see what happens in two weeks, two months, and two years. Maybe Javin will have no complications, a short recovery period, and this will be one of those tides that receded before a storm came. Or maybe it will be our greatest challenge yet, who knows. I know that Javin has strong faith, mine is still a wandering star, tossed about like the sea sometimes, but when the sky clears, the waves mellow like gentle symphonies, and the moon is full and big, that’s when we realize what God has done and what we’ve survived. Without challenges we will never be strong, and without suffering we will never know our capacity to overcome, or in our weakest, to endure.