I read once that discovering your child is on the spectrum is like planning a trip to Italy. You’ve done your reading, learned the language, packed your bags, and up, up and away, you’re off. Then, upon landing, you are actually not in Italy after all. “Good afternoon Ladies & Gentleman. This is your pilot speaking. Welcome to Holland!” Wait, what? This is not the journey we had planned. It wasn’t exactly like this for us; not at first. Sitting at a conference table, surrounded by a team of developmental specialists, we were relieved to have clarity about our journey. It was with an audible “Hallelujah!” and a “Thank you Jesus!,” that we received the news that James, then three, was High Functioning Autistic. Judging by the expressions on the specialists faces, I was fairly certain ours was not a typical reaction. I was so relieved to have reached a destination, diagnosis, that in exiting the room I couldn't help but turn, and like a quarterback having just won the Super Bowl, exclaim, “We’re going to Disney World!”... because it seemed fitting, and because (oh, the irony) we actually were.
Except neither diagnosis nor our vacation were the destination. Days later, I would cling to my terrified son as he frantically tried to claw his way off a children’s ride. He, desperate to escape the ride, and I, desperate to help him, but powerless to do so. By memory, that is the first time I felt it burn.
Twice yesterday, his face red, and tear drenched, I had to scoop his heart up off the yellow top of the playground. “Why don’t they like me?,” he sobbed. “I want to play with them.” “Do something Momma.” We’ve been here before. I know, I know, “Boys will be boys,” right? Not to this fierce maternal advocate. From recess stalking mom, hiding in the bushes (yes, really), to scary “I’ll squish you with my eyes you little punk” mom, to flight not fight mom, I’ve held back just as many tears as he’s let freely flow, or at least I’ve tried to, hold them back. But boys will be boys. And life can be cruel. And he won’t always be liked. And he will hurt. And his future is uncertain. And it never is quite the way you play it in your head. And I am powerless. Totally. To it all. And it doesn’t matter that I know that “in this world we will have trouble,”[1] Take heart??? All I can feel is the burn. It burns; the byproduct of this diagnosis. I didn’t expect it; the burning, deep in the pit. An actual, gut-wrenching burn.
“Do something Momma.” But what do I do? Please someone tell me! Because when my son hurts; when my hopes and plans for him go up in smoke; when he needs saving and I can’t save, I fight. I fight the burn.
I fight the burn of powerlessness; pen to paper, pages of tear stained prayers, crying out to my God who hears, I place James, my “Isaac”, on the altar, only to turn and snatch him back, shaking my fists, white-knuckled, at the same God, for writing us this story.
I fight the burn of faithlessness, praying “help my unbelief!”[2] then turn and go on bitterly doubting the Lord’s supposed plans to “prosper” James,“to give [him] hope and a future.”[3]
I fight the burn of shame and guilt because no matter how many times I tell myself “do not worry about tomorrow,”[4] I can’t shake the worry! “What was God thinking?!?” I scream inside. I am not enough: social enough, patient enough, faithful enough, “This boy deserves more and I am not enough!”
And I fight the hopelessness, of a broken heart.
“It burns, Lord. It burns.”
Too many days do I spend fighting fire, trying to extinguish the burn. Blinded, I grope my way through the smoke, waiting to exhale, gritting my teeth and bearing it, eyes wide shut. It’s not until the smoke becomes too thick and I’ve gone far too long without breath, and my eyes are out of water that I will mimic my son and plea,“Do something Father!” And He does. With a whisper, through the crackle in the fire, “[I] will fight for you; you need only to be still.”[5]
He will fight for me. He will fight for James.
“The Lord your God is with you, the Mighty warrior who saves. He will take great delight in you. In His love he will no longer rebuke you, but will rejoice over you with singing.” [6]
The smoke clears. He is the fire. He is the burn. I’ve been fighting the One who is mighty to save. What I thought was meant to harm me, to harm James, “God intended it all for good.”[7]
“Let it burn, Lord. Let it burn.”
There are days when the fire burns so clean that I can see right through it, and stare into its refining purpose. But just as unpredictably as clarity comes, clarity goes. I place James on the altar. I take him off. On again. Off again. But I didn’t land in Holland by happenstance, just ask the Pilot; I’m here on pilgrimage, being taught to walk through the smoke and into the fire. I suppose someday I will look around to find I’m standing right in the center of His eternal flame. Until then, I am in Holland and I AM is here. Holland may not be Italy, but look around and you will find, it is just as delightful…maybe even more.
“Occasionally weep deeply over the life you hoped would be. Grieve the losses. Then wash your face. Trust God. And embrace the life you have.”John Piper
[1] John 16:33[2] Mark 9:24[3] Jeremiah 29:11[4] Matthew 6:34[5] Exodus 14:14[6] Zephaniah 3:17[7] Genesis 50:20
A native of D.C., Victoria Gentry has resigned herself to being a Washingtonian lifer. She lives on Capitol Hill with her husband James, their 2 children, James IV (7), and Elin, (a Threenager), and a four-legged Irish lad they call “Fitz.” Nothing about motherhood has gone as she expected. It has made for a most beautiful disaster!