5:00 am From his hospital bed I hear the familiar intake of breath as a muscle spasm begins. Switching on the light I discover Riley in a clonic seizure. Grabbing him up, talking to him, massaging his limbs; the seizure subsides in moments. Four years ago, this episode could have lasted for hours. Now with all the anti-seizure drugs he is often able to cease without intervention.
5:02 am On with the day. After rearranging him repeatedly throughout the night, this meant falling back to sleep and oversleeping. John and Ronan always rise by 5:40 am. Oddly, they oversleep as well. This is very strange. I cannot explain Ronan oversleeping. John however has been working non-stop and just started trying Valerian Root Tea to help with his insomnia: it appears to actually work.
8:00 am Riley is off on the bus with a new assistant, Antonetta. Assistant Liz had to cut back on her hours; we are very disappointed. John and Ronan have already headed in their separate directions.
8:05 Plan for my day: dishes and laundry, desperately needed class at the gym, paperwork, sell some Arbonne, collect Riley from school by 2 pm, Integrity Biofeedback appointment for Riley and myself, pick up Ronan, oh – did I get Riley back into Dr. Stohler’s chiropractor routine, riding by 5 pm (we missed last week), is the shower set up for Riley, do I have everything Ronan will need for homework at the barn, are tomorrow’s appointments set up, is dinner planned for the late return…. then start it all over again.
8:35 am Phone call from Lee County Transportation. Riley has suffered a seizure on board the bus and EMS is with him now. Then EMS/Bonita Springs Fire-Rescue is on the phone. I must sign in person for the bus to be released from the roadside.
8:40 am Heading somewhere in the vicinity of Old 41 and E. Terry. How do I handle this now. Seizure’s are part of our life. Riley has quite a lot of drugs in his system to manage this disorder. The last neurology appointment, I was instructed to administer Diastat after the next cluster seizure – this must qualify. However, that window has come and gone. Riley is ready to go on with his day. Stimulation is better for him than coddling him. Yet, Riley is a “hot potato.” Everyone who gets him in their arms tosses him back to mom or dad as quickly as possible. Do I just take him home to humor everyone else? No thank you. Riley needs to live a life. I need to get a life. On the way I talk to school’s nursing office: I love that office, let him have his day – what do ya’ll think the big green frog backpack hanging from the wheelchair full of Diastat and medical and contact information is for! (no one touched it by the way)
9:00 am I have found them, bus, EMS, ambulance. Screeching the jeep into a tiny little used car lot, I am there.
Camera in hand. Yes, I have my camera. These are the moments to record as far as I am concerned and I have missed plenty of them. EMS spies the crazy woman in ripped gym clothes, uncombed hair, red backpack purse and camera slung around the neck climbing aboard the bus.
I am greeted by a concerned driver, Louis… he spoke at least 20 words this morning, he must have been really nervous. Welcome to bus 27126 Antonetta! And then three rather serious EMS technicians. Loosen up guys, perhaps you’ve encountered seizure disorders before. Then of course Riley, still seated in his chair is smiling, laughing, and kicking – just like the last time I tracked down the bus and ambulance. Good times.
Sign some papers.
Kisses for Riley.
Big “Hi” for the little girl across the aisle tugging on my arm. “Hi” again. Yes, “Hi, Sweetheart.”
Merry waves from the boy ahead in the bus for the men in uniform.
Uniformed man stands up straighter and pulls in his chin.
Ambulance drives away.
More seriousness… more laughs.
On your way please school bus #27126.
Oh yeah, swing by the pharmacy for Leviteracetam. Say yes to drugs.
Where was my day going? Seize your day, Stace!
We’re gonna have our day, darn it! Stacie Wiesenbaugh