Lost In Translation

“I need batteries.”

This phrase escaped from the mouth of our Cannon for the first time about 3 months ago. A perfectly normal thing to say, right? So, we did what anyone would do when told this. We looked around and asked him what toy or device he could be talking about. Testing various ones that flash, move, and make noise. Nothing. We looked inside the house and out….in the car. Nothing. And he would just get really frustrated when pushed to identify the object so we often just dropped the subject and tried to redirect him to something else. A snack option, playing a game, going outside. Anything to keep him from continuously repeating this phrase. And I mean CONTINUOUSLY. (In the Autism world, this is called “scripting.”) It has come up in the most bizarre locations….church, public bathrooms, during therapy appointments, in the shower, and such. We felt like we tried our hardest to understand why he kept saying this but we simply could not. And just chalked it up to something he must have heard somewhere.

He didn’t stop saying it over the last 3 months. And the intensity with which he would speak it amped up as well. He would get into my face and press his face to mine telling me adamantly….”I NEED BATTERIES.” I was at a loss.

Recently, we traveled to Oregon to visit Mark’s family for the first time in 6 years. We had a lovely visit but with its usual set of complications. Getting proper food, meds, and wound care supplies for Cannon. Keeping him calm in the face of new situations, places, and people. Training Roxy to help with those things and following all service dog protocols. And just managing his pain while trying to be polite to our hosts and such.

But one day, we had a breakthrough/heart break. Cannon had struggled mightily throughout the trip and the last few months with much increased tummy pain. He has been begging in most cases to drink all his meals. We try to get him to eat at least one meal and one snack that is food but aren’t always succeeding. We are using medical food in powder form to make shakes for him super often. I honestly can’t remember the last time he had 2 food meals in a day.

One night, the pain was particularly bad. I tried everything. Medicated him. Put him in a warm shower (which he likes) to try and distract him. Massaged his tummy the way a therapist showed me. Read a favorite book, had Roxy give lots of cuddles and kisses, and sang favorite songs to him. Nothing was giving him any comfort or relief.

And then, 3 months of trying to tell us something finally came together.

He grabbed my face and screamed, “MY BODY ISN’T WORKING! I NEED BATTERIES!!!”

Well, there it was. I admit to being stung by the words and stunned at the same time. He made PERFECT SENSE. When a toy no longer works, you put batteries in it. So, why couldn’t he be the same way? AHHHHHH!!! My heart broke. Right in half. Because I had done all I could in terms of pain management. My eyes brimmed over with those hot, salty tears reserved for the really tough stuff. I held his hand, placed my other on his tummy, and prayed like I haven’t in a long time. With PLEADING, with every word I could muster, with fire in my soul…..I PRAYED! He just laid there. I thank God he slept that night. I begged for at the very least….that. I fell asleep with him on that little twin bed in my in-laws house. Clutching my sweet boy and continuing to pray with ferver. Feeling the closeness to both Cannon and my Father in Heaven as I poured out my heart.

Psalm 34:18 says, ”The Lord is near to the brokenhearted.” This verse could not have been more true that night.

Y’all! The moral of this story is twofold. 1) Chronic pain is nothing short of ROUGH! But, God hears our prayers. 2) Never, ever underestimate people with Autism. They ARE trying. There IS sense to what they say quite often. If you hang around long enough, dig deeper, and just love them……sometimes you’ll get a glimpse into those fascinating inner workings. The complex labyrinth that is the Autism mind. The pieces just have to come together.

Tomorrow (or today since I am posting this so late), Cannon will have an Upper and Lower Endoscopy with his G.I. doctor (labs and biopsies included), a Bronchoscopy with his new Pulmonologist, and a changing out of his Chait Button in Interventional Radiology. The scopes will give us a glimpse as to how his esophagus is faring against his raging reflux, whether or not Eosinophilic Esophagitis (asthma of the esophagus) is still present, and check out his stomach for any damage from the Gastroparesis. The Bronchoscopy will let us know how his lungs look and whether or not he is still aspirating fat from his food into his lungs. And if so….how badly. This last bit of info will determine if we continue discussing the possibility of a feeding tube or not. This is still VERY much a possibility! The Chait Button has to be removed and switched out with a new one every 9 months. It IS a bit tricky due to the spiral nature of the tube which is why it is done in Interventional Radiology as opposed to surgery. They can inject dye into the pathway to see where they are going with the tube instead of blindly winding the tube back in.

The biggest prayer request we have right now is this. Cannon has had a cold all week. It seemed to be going away and he sounded good this morning and tonight he is stuffing right back up. I am doing all I can with medicine, oils, liquids, humidifiers, and such but we are where we are. If it isn’t much improved by the morning, they will not put him under. And rescheduling a procedure that involves coordinating 3 doctors schedules is quite tricky.

We need the information that these procedures can bring and are praying with all our hearts that this particular day will give us more answers than questions. More solutions than disbelieving head shakes from the doctors. NO NEW DIAGNOSES!! And bring change that produces peace into our sweet Cannon’s body. A peace that would have him never requesting batteries for pain relief ever again!

But no matter what….we will continue to pray him through the tough moments, love him through the anger, snuggle him when he’s sad. Proclaiming from every mountaintop and valley of this journey….the words of this song…..

“I have this hope….in the depths of my soul. In the flood or the fire…..you’re with me and you won’t let go.”

“Trusting grace can be seen in both triumph and tragedy.”

One thought on “Lost In Translation

  1. Kimberly…so sad I missed you this summer at Worship at Zion Corvallis, Oregon. Some Sundays in the summer I work the campground. Mike was so happy to see Cannon with his dog!!! Praying and would you please change my e-mail to pvgreig@gmail.com….this one after 20 years gets tons of spam that I cannot block.

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