The crazy, mad, wonderful world of being a warrior mom... That should be the title of the book so many tell me I must write about our "Life with Autism, Seizures, and a side of Chaos..." There have been many titles I've thought of using over the years. I think my favorite is still "There's Poop Floating in my Tub: and other Oddities of Life with Autism." We certainly have experienced enough of those oddities to fill an entire book series. But I digress --
The crazy, mad, wonderful world of being a warrior mom --- is that as I sit here -- I've waited an entire year for this year's opportunity for four nights and days of respite. Sweet, blissful, respite. Oh, we occasionally get a break - at least 3-4 days a week he goes to his therapy program. Once a quarter or slightly more often we actually get a few hours respite on an evening or weekend day.
But for overnight respite. For 4 nights and 4 days. That is sheer luxury. It's like, well, what typical families can have anytime they want. Their typical kids going to another typical friends house for a sleepover. Going to Grandma's for a week. Luxuries. Those things are luxuries. The parents who can take advantage of those things are soiled rotten with extravagance.
And for the next four nights and four days, I get to be them.
I've longed for this day. Camp Day. I've counted down. I've wished it was sooner. More often. But as is always the case, on this day I am not filled with the sweet decadence of no worries, but rather the bitter taste of what if.
I mean, when the phone rings with my typical son at someone's house or Grandma's it will be about those silly things typical boys do that a stern threat will thwart the continuation of. If the phone rings while Brandon is at camp -- he's either had a seizure and a bad fall, or they've lost him.
Hence the "OMG-when-will-camp-start?" and then the "OMG-how-can-I-leave-him-there!"
Just this morning - his incessant humming for the last two days has me at the point where Todd needs to hide the ice pick so I don't use it to gouge my ear drums out. I literally cannot will the clock to move fast enough forward to peel out of my driveway and be the first in line at the camp gate to honk the horn in cadence with Brandon's humming until they come get him and I can leave skid marks leaving camp.
But as I feel the sweet relief of writing that - I know that once there I will linger. I will grill his counselor in testing him to make sure he read my twelve page "Caring for Brandon" document that is highlighted and referenced. (Ok, maybe not twelve pages and maybe not referenced, but it is four pages long and there are highlighted parts.) I will cry. I will regret wanting to leave him so badly. And I will cry some more as all of my fears will scroll through my mind. What if he wanders off. What if they don't feed him enough. What if they don't do his supplements right. What if he wanders off. What if he's cold at night. What if his counselor actually dares to sleep and Brandon is wet. He has a seizure.
As much as I want to take him, I don't want to leave him.
All of my hopes and fears in my life with autism and seizures summed up in that sentence.
I think perhaps for me the only reason I can actually leave him and drive away with tears streaming down my face, is because I know I must. This camp each year, prepares me, and him, for what will come one day when I am no longer here.
I will have to trust.
Brandon will have to adapt.
And it reminds me that all I truly have control over is my HOPEISM. In believing in prayer. HOPEISM that the heart of all who are part of Camp Blessing, TX is the heart of all who will be caring for him when I am no longer here. Prayer that his counselor, his caregiver for the week is someone who is given supernatural ability to endure. To understand Brandon. To persevere. Someone who is superhuman and needs no sleep for the next four nights. Prayer that God will give him an autism-free, seizure-free week. Prayer that he won't wander off or fall down. Peace to know that it will be ok.
As I sit here with his bags packed, his supplement suitcase packed, the forms filled out and the car loaded as if we were moving out of the country - I'd like to think that this fifth year of Camp Blessing, TX for us will be easier. I mean, we are veterans at this.
But it's not.
It never gets easy.
Autism doesn't give you that luxury.
All I have is the fact that our life with autism is in fact a crazy, mad, sometimes wonderful life that has landed us somewhere between the sacred and mundane but always, always, right smack in the middle of where our faith that it will all be ok meets with God's faithfulness that it will indeed, be ok.
