Garret's arms twist at sharp angles. His eyes, vacant and unfocused, stare fixedly away into a void, veiled windows to a soul suddenly plunged into primordial darkness. His brain fires primeval charges summoned from deep within the tohu wa bohu, his body tensing and releasing with their staccato rhythm. Slowly the seizure subsides and he comes back, my little boy again inhabiting the body that betrayed him.
Nothing messes with your theology more than your own child's
disability. My boy has "epilepsy and apraxia of speech": a diagnosis
that tells me what I already know, that he has seizures and can't
process language. We communicate with some halting words, some signs,
some pantomime. We medicate and wonder when the seizures will strike
again, if they will ever cease.
In the dark watches of the night my soul cries out to the Lord: If he "cannot hear, how can the preacher share the good news with him," to follow up on St. Paul's vexing question in Romans 10? What is "faith" for a boy with a miswired brain? What is "hope" for the man whose heritage is shattered by rogue synaptic currents no one can control or predict?
Jaideep's arms twist at sharp angles. His eyes, vacant and
unfocused, stare fixedly into a void. His brain fires its last chaotic
charge, the death rattle shuddering to a stop. Born on the trash heaps
of Mumbai, dysentery and malnutrition absorb him into their hoary
embrace. He lived and died a Hindu without hearing of the carpenter
from Nazareth.
Where were faith, hope and love for this eikon of God? Is he any less precious than my epileptic apraxic boy?
God of the mucky stable afterbirth, bearer of sharp-glassed leather on bare back, wearer of spit and thorns, whose arms were twisted at sharp angles fastened with nails, abandoned, god-forsaken Son with agonized cry for eternalperichoretic dance interrupted by Death's convulsions: how will you redeem this suffering? Do you hear Garret and Jaideep's cries?
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David, a response from my soul as I sigh and blink an extra few times. My brother has Down's Syndrome. He is in his 20's but unable to communicate anything more than very basic words and ideas. I am a very verbal person and it is hard for me to wonder what it is like to be isolated with your thoughts in your own body. Does he think deep thoughts or mostly just pass the time? God knows his name. The Spirit is able to intercede for him with groanings that cannot be uttered.
None of this means I know how you feel as a parent of a child with seizures and other difficulties. wow. What an eloquent and moving post. Surely, in the end, the judge of all the earth, the one with the power of life over death, will surprise us with his ability to redeem such suffering.
Hope and Love
surely love is the only thing left, for in the wake of such witness philosophy, theology, study, knowledge, certainty/ies and all other manner of way's to answer fail and fall to the way sides
-
and all we are left with is a wisp of hope and the space for Love.
For God if he is here/there is Love and was love in way's we may never answer/imagine/understand but can only Hope
I cannot imagine the pain and love you go through.
Thanks to Scot for the forum to express these thoughts. I'm very grateful for Garrett. Because he lacks words, he's amazingly expressive in other ways, which makes him one of the warmest and funniest kids you'll ever meet. What a gift! Of course, I wouldn't wish him to have to gain those gifts of warmth and humor through this mis-wiring of his brain, which limits him in so many ways. But I'm glad for this little window that opens in the face of closed doors.
Yet I really do struggle with my theology because of Garrett. I referenced Romans 10 in the post because it was a touchstone of the "four spiritual laws" soteriology I inherited: that salvation is all about substitutionary atonement and comes only in a discernible moment of individual conversion through hearing the gospel and appropriating its benefits.
Garrett cannot "hear" the gospel, because the wiring of his brain won't allow him to process linguistic narratives. I try to draw pictures and act out the gospel story for him, but I know he doesn't really "get" it. When we pray together at bedtime, he thinks "Jesus" is just another name on a list, along with mom, dad, mummum and papa.
Now, I still think the substitionary atonement is a crucial aspect (though only one aspect) of the cross, and that God calls everyone to respond personally to the gospel. But I suppose I have to relax my categories a bit when it comes to what it means for the gospel to be "preached" and for a person to "respond." If this broken little boy is God's gift to my family, I do not believe God gave us this gift for us to live in dread that his neurological confusion will ensure his eternal destruction.
And if this is what I must believe, what can I say about all the broken little boys and girls around the world, all the millions of Jaideeps whose bodies literally are thrown on the trash heaps of poverty every day? I will not presume to judge God's justice, nor will I deny the exclusivity of Jesus' claim to be Lord, his sole ability, as the incarnate God, to have defeated sin and death on the cross, or the unique power of his resurrection. But if I know him at all, I do not believe he gives the world the gift of all these forgotten children only for us to live in dread that the unfortunate circumstances of their birth ensure their eternal destruction. There must be more to the story if God loves Garrett and Jaideep as much as He has said and shown in Christ.
What a heart breaking story, and what a challenging trial that God has blessed you with. It's a joy in my heart to see the love and the appreciation for your uniquely beautiful son. Thank you so much for sharing this with your brothers and sisters.
I like rules and clear answers, and I think you already know that this defies those a bit. I wonder if some of the more robust theologians that frequent this site could find error with examining this from an "age of accountability" stand point?
I trust, as you do, that God's plan is both just and good.
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