On the same morning that Angelo was set up to have open heart surgery, I woke at 5:00 to get ready for work. Our pup, Belle, who sleeps with me, doesn't mind waking up so early. Ask her. She will tell you she loves to start her day by going outside. While she does her business, I do knee stretches, now 8 months removed from surgery, most days it feels pretty good. The dogs will not let me stretch it out though, preferring to hop on top of me when I am in the most prone position and showering me, literally, with love. After my stretches, I let Belle back in and she trots down the hall to Tonio's room. Angel, our other pup, likes to sleep with Tonio. She will shimmy beneath the blankets, burying herself and cuddle up against Tonio keeping him warm and safe through the night. She has a sensitive stomach though, so for years my routine is to wake her up, give her a little breakfast, let her out and put both pups back in with Tonio. They will let him sleep longer having been outside and getting a little something in their tummies.
Belle
Angel and Tonio
On this morning, October 20th, I happened to be texting with a friend and flipped on the hall light as I walked towards Tonio's room. In the light, I could see that Angel had gotten sick at the foot of the bed, so I removed the blanket and told Tonio I would get him a new one. When I returned with his clean blanket, Tonio was having a full out seizure. Eyes rolled up, bloody foam coming out of his mouth, shaking uncontrollably...I lost it.
I jumped on his bed, cradling him, begging him to wake up. Yelling at him, asking what's wrong, Tonio!?!!? I wanted to believe it was a bad dream. The kind you are powerless to wake up from. Cody had suffered night terror and I prayed that's what it was.
For one timeless second, Tonio's head swiveled towards me and he said 'Hi Dad'....
My friend I had been texting with told me to dial 911 and get him on his side so he would not asphyxiate if he vomited. It took forever until I could hear the approaching scream of sirens. I held Tonio so tight, pleading with him to be ok. As our house became bathed in the surreal reds and blues of the fire engine and ambulance's lights, I had an intense flashback to 12/13/10 - the early morning ambulance coming for Kim's final ride...it was so real, I was actually there, just for a moment...and then the paramedics began filling my house, talking over one another with instruction, questions, taking care of Tonio.
Thankfully, he cannot remember any of it. I can never forget. It is etched in my memory. The ER near our house took a CT, bloodwork and replenished his fluids. All tests came back negative.
To say he doesn't deserve this is inane. Nobody deserves this. But Tonio...he is a remarkable young man. You hear of people who like to put others first. And those who frequently put others first. Kim was like that. Tonio always puts others first. The time in the ER gave me a millennium to think and rehash - I cannot recall him saying 'I want' or 'I need' or suggesting we do this or go there. He simply always thinks of everyone else first!! It's in his heart. He is truly selfless. Always helping me around the house and asking what else he can do. Worrying over his sister and brother and making sure they are ok. Thinking of friends, family, teachers, and of course, his pets, before his own needs. It's how he is wired. His ghost corn snake, Cruiser, bearded dragon, Jake and our two pups get his attention throughout the day for food, cage cleaning, walks and hugs.
Since I began this post, all the way back in December, Antonio has had two more major seizures. One evening, after a 13 hours shift at Amazon, I came home to find Antonio and Autumn preparing dinner for me...amazing kids. We talked and then I made my way to the bedroom to change, still talking. There was a sudden silence, it was as if the earth itself had stopped for a moment. I cocked my head listening, nearly simulateneously a crash and a thud and a horrifying shriek from Autumn that made me feel so cold. As I sprinted to the kitchen, there was Antonio on the floor with his sister cradling his head and trying to talk him through his seizure. I can't describe to you the tidal wave of emotions as we tried to help him, but there really isn't anything we can do but try to keep him safe. I was struck by Autumn's loving, caring bravery in the face of having to witness her brother convulsing on the cold, hard tile as she tried to protect him.
The ambulances have been hard on all of us. It is a deep mercy that Antonio has no recollection of them. I can hear them before I can see them. It is still dark out each time. As they close in on our neighborhood, their lights slip between the trees and the houses, bathing everything in a surreal wash of blues and reds. What it feels like is seeing it all from under water. The sirens pierce the area and they sound like desparation. Or is it salvation? These last couple times its that. Salvation. Thank God. The experience - being under water, hearing the sirens, seeing the strobing lights - flashes me back to the early morning hours of December 13th, 2010. That night, it was desparation...
And it's Kendrick Lamar filling my mind...
"Look, I feel like I can't breathe
Look, I feel like I can't sleep
Look, I feel heartless, often off this
Feelin' of fallin', of fallin' apart with
Darkest hours, lost it
The feelin' is toxic, I feel like I'm boxin' demons...
Ain't nobody praying for me."
Now, it's been 5 months since he has had an episode. His doctors have him on 2000 mg of Keppra, have continued to run tests, including an overnight EEG at Tucson Medical Center and feel the medication is doing its job in preventing seizures.
To say Tonio has been strong would be an understatement. Stoic, a fighter in every sense of the word? Better, but still not quite. He has taken everything in stride and has done research to help him through, changing his diet to reduce carbs, which can be a common factor in triggering seizures, losing 25 lbs along the way. He has become so much more introspective, routine driven and pragmatic throughought this journey. Every day is a new challenge - thank God covid is lifting and he has been able to see his southwest cousins, aunt and uncles much more which is helping him through. School has been an incredible challenge, as he struggles to relearn concepts lost to seizures and fight fears, depression and insomnia that have been a part of the aftermath.
One day, last month, on a cool overcast morning, he wanted to go to Arizona Sonoran Desert Museum. A place he loves. A place he has visited since birth a thousand times. He has a great love of animals and has recently been talking about pursuing a career in that field. Kim and I became members in 1994 and always have taken the kids there - they never grow tired of the spacious grounds, the environments created for the desert animals and the outdoor experience. Tonio could walk that place blindfolded - or in his sleep. Except today, as we entered, when I asked him what he wanted to see first, he replied 'The otters' - his mama's favorites. I started off down the path and noticed Tonio has started down a different path. He quickly corrected himself and joined me. As we wound our way through the cacti and desert flora, I noticed a lost look on his face and a growing anxiety that seemed to form a cloud around him. I stopped and asked him if he was feeling ok...He said 'Dad, I don't remember being here. I can't remember how to find the otters.' My heart was breaking for him as he stood there looking around, trying to catch some sense of where he was - anything familiar. He related to me that a lot of his memories had been erased - stolen - by the seizures. In that moment, I embraced him and promised him we would make him new memories. Together.
I don't know what is next for Antonio. I only know that I am trying to do everything I can to help him. Graduation looms and is a huge question mark. His teachers and adminstrators have been patient. And gracious in working with him to help him get his grades up to be able to walk across that stage on May 26th. But he missed so much time. And covid took more, as he was relegated to online learning, which isn't an easy method to relearn calculus or to take ceramics II. Now that the schools have re-opened, Tonio finds himself going back and forth between virtual and in class studies. Depending on how much sleep he was able to get the night before. And how high his confidence level is that morning. His major assignment, Senior Exit Project, combines a research paper with job study. He is working on interviewing people in the animal field. Like Dr. Karen Burrows, who Kim worked for as a vet tech a million years ago and tabbed her to help open Ventana Animal Hospital. But, it is a struggle, as he can't quite remember what he is working towards - how the interview and presentations are structured. I am praying for him and trying to help...right now he needs prayers...and someone stronger than me.
His kindergarten teacher, Mary, took some outstanding photos of Tonio for his senior pics. He chose Agua Caliente Park - another Kim favorite and same spot his sister chose 3 years ago - Mary did an amazing job with her photo shoot then and she was able to capture Antonio in amazing fashion as well.
When he does walk across that stage, he will have worked hard - fought - and earned every step...