"I experienced the most amazing gift this past Christmas week. Britton sat at his desk and worked on answering questions. (He has given up most of his academic work totally during Covid-19) But on this day of miracles... In the middle of the most mundane Monday morning...he sat down at his desk and pulled out his very first worksheets.
He began with the basic questions. "If you go camping, where would you sleep? tent. If a child has a replica of a baby, what's it called?" doll. Silly questions to most of us, but they seem to help him keep his world straight. But then...right in the middle of all the mundane...He spontaneously typed two deep thoughts without being prompted.
He just wanted, or maybe he just needed to tell someone how he was feeling.
We've all been there. That desire so strong to express our feelings, we might even spill it to a stranger we've just met. For him, the gift of clear thinking, and the ability to control his own body caused him to rejoice in this Season of Love and Compassion.
Television screens, movie screens, and worst of all... his IPad screen. He has developed photosensitive epilepsy. So any amount of light flashing in his eyes can trigger a seizure. He is well aware and avoids them like the plague. He is now typing only on my cell phone. I don't know if the size of the screen matters, but on this day he was willing to risk it. In the list of words he was reciting he began typing his feelings.
"Say people pray for me and I feel prayers pulling and pulling on my mind. Playing God's promises."
How grateful I am that his mind plays God's promises. I recite them often. I write them on index cards and tape them on his walls. "That's how we win these dark battles, Britton." (I can be so preachy.) Nodding my head, eyes wide in grateful wonder. "God's word is the weapon that brings us the hope and peace we need." I moved right on, he really hates it when I get sappy. I have to be careful...my own emotions can affect him, and not always in a good way. He's like an emotional savant. He senses the feelings, emotions, and fears of everyone around him. His life has taught him that it is survival to know how others feel. I swallowed, took a breath, and moved on. But inside I was singing and praising. Thanking God for the brief glimpses into who he is. The unbelievable gift of his thoughts.
I spend a lot of December wondering how Britton will manage Christmas. There's so much about the whole Holiday season that doesn't vibe well when you're an emotional seismograph. Other people's frustrations, fears, anger...can cause an earthquake that hits a ten on the Richter scale. As much as family tries to love him, and us...I do attempt to create a situation that he can feel peace in. It's pretty futile, but that doesn't stop me.
All families walk various tightropes during the holidays. Some struggle with critical in-laws, some with missing a lost loved one, and some with... trying to please people who can't be pleased. I knew exactly what Britton was trying to explain to me. For him, the OCD that drives him to futility had eased."Zero. I have Zero Needs to be crazy...mom be brave." I'm pretty sure It is how he expressed to me that he didn't feel all the brutal compulsions of Pandas. (Pediatric Autoimmune Neuropsychiatric Disorder) The unquenchable need to flap, hum, touch, or spin.
His admonitions that I be brave, trouble me sometimes. He must know fear comes for the whole family when he seizes. When his mind becomes jumbled with inflammation and misfires... when he's angry. Fear is a brash, bully. It tries to overpower and be the loudest voice in our minds. It will elbow peace right out of our hearts and leave us consumed with its darkness. I'm sure you know this...but Jesus tells us to "fear not" about 365 times. So it's a fair assumption that we all must need reminding. Jesus showed us how to live a life without fear...a life of courage. In today's language, Jesus might very well say it like this, "Be Brave! Fear is a liar!"
Britton is my blaring example of courage day in and day out. I watch him face his difficult life...usually with a smile on his face. About every 4-7 days I notice his countenance change into a serious young man. He knows a seizure is coming...I don't know for sure how he knows. Perhaps it's the common warnings...visual disturbances...or a strange taste in his mouth? I don't really have all the answers. But he will struggle through till the connections in his brain misfire. He will cry out, awake or asleep...his eyes roll back, his face turns blue...and he will spend way too much time struggling to breathe.
When it all finally ends...his bloodshot eyes will blink open and he will look for me. Reach for my hand and give it a squeeze...reassuring ME that all will be well. Somewhere between eight and twelve hours of sleep will pass as his body attempts to recover...then, he will drag himself out of the bed and try, try again. I am humbled by how much suffering and despair he lives through. Still, he tries to make the best of it all...refusing to even consider giving up.
When he does decide to type...he always points me back to the God of all hope and reminds me His promises are guaranteed...never a gamble. Fear never sang a song...never delivered us from evil. Fear never paid our past due bills or saved our crumbling marriages. No, Faith does that...courage does that.
So for 2021...my plan is to say to myself... "you have zero need to fear..." and to remember that:
"If Fear is born..out of a story we tell ourselves. Maybe, it's time we tell ourselves a different story."
No comments:
Post a Comment