Awful trials and abundant blessings

It was the 2^nd of July. Dave’s last seizure was May 29, 2022. I had begun marveling with each passing day because we had gone 34 days without a seizure. This was a record. He hadn’t gone a month without seizures since this nightmare started. I was hopeful we had finally found the ‘right’ concoction of supplements to keep this monster at bay. I was hopeful, but I was also scared to believe it. Then, as things always seem to happen in my life, the hammer came crashing down. Again.

During this journey through epilepsy, we have come to realize that there can be ‘triggers’ to seizures. More plainly stated, there are things you can do, or not do as the case may be, to help prevent seizures from occurring. We found out that sleep, or the lack thereof, is a huge, HUGE, trigger for Dave. So, every night we do everything we can to ensure Dave gets the proper amount of rest. Dave stays with his Dad once every weekend. When he gets to go there, it’s like Christmas. He is SO excited to go and he is SO excited to be there, he just doesn’t want to waste ANY time sleeping. Garritt is fascinated that Dave will sleep 10, 11 and even 12 hours at home. Because at his house each weekend, Dave just won’t sleep. He wakes at the crack of dawn, anxious to start his day with Garritt and Kristy. So, they began making him go to bed sooner. They have done everything possible to try to mimic the surroundings he has at home. But you just can’t MAKE someone sleep. Therefore, and most unfortunately, a great percent of seizures have happened on Sunday mornings at Garritt’s house.  I threw out the idea that maybe we should have him SLEEP at home Saturday nights, but do everything else with Garritt on Saturday afternoon and Sundays. Garritt didn’t want to go down that avenue as he loves having him that one night each weekend. But then July 3^rd happened.

Dave went to bed early on July 2^nd. Garritt said he actually asked to go to bed at 9:30. And then he woke about 6 am (so he got PLENTY of sleep). Garritt sat with Dave all morning while he played his music and did a puzzle. Then, Garritt went to use the restroom. He was gone for ONE moment. He came back and Dave was on his bed, lip bleeding. He had a seizure. Garritt was devastated. And when I found out, I was devastated. PTSD set in all over again for all of us. Dave went back to sleep (as he always usually does after seizures). But again, he was at Garritt’s and he loves being at Garritt’s. So, after just a couple hours he wanted to wake and eat lunch. Dave got up and Garritt made his lunch. And then while Dave was eating, he had another seizure. He almost choked on his food. Garritt said this seizure was the most violent he had ever seen and it scared the crap out of him. Garritt then called me and I started screaming. Two grand mal, violent, seizures in ONE day. In ONE morning. This had never happened before. Depression again set in. I didn’t understand it. We had gone 34 days without one. I believed we had finally found the right mix of supplements. But here I was again, back at square one.

That day, Garritt said, “I give up.” He told me he wanted to go forward with my plan of not having Dave stay there. The following Saturday, we planned for Garritt to get Dave at 3pm (like he usually did). He would hang out, have dinner and do everything he normally did. And then when he was ready for bed, Ronnie and I would pick him up and bring him home to sleep. The next day, we’d bring Dave to Garritt’s house early in the morning so he could have breakfast and spend his whole day there. We had it all planned out. Saturday morning came and, as I always did, I woke Dave to use the restroom and then go back to sleep. A couple hours later, while Dave was in his bed, his seizure watch went off. Ronnie ran into the room to see Dave’s arms flailing about. He was having another F#$%^&*! seizure. Only 6 days after the double seizure. Every time I thought I had it figured out, the reality of my lack of control of ANYTHING slapped me in the face. Again.

The days rolled by. It’s become ritualistic after a seizure. I just move about my day like a robot, feeling numb. I wake, I exercise, I shower, I work, I cook for Dave, I sleep. Wash. Rinse. Repeat. I bury my emotion. It’s always all right there, it literally just sits right on my chest but it doesn’t go anywhere. I can’t let it out because I don’t know if I’d ever stop. I get tired of hearing myself say the same things. I’m sure anyone who asks me gets tired of hearing the same answer. So, I don’t talk about it. This is just my life. I just have to roll with the punches. What other choice do I have? None.

When all of these seizures started, we had started to investigate. We tried meds. But Dave is SO incredibly sensitive to meds. He is just like me in that regard, only 1,000 times worse. We looked into surgery, but that seemed so invasive. We looked into seizure dogs, but they are the price of a car. Then, we searched until we found a doctor who thought he knew what was causing these. And he set out to prescribe a mix of pills until we finally got to a place where the seizures were becoming more infrequent. Until they weren’t.

I have always said, “there are always blessings in your life, you just have to look.” This has been my motto ever since the early days of autism. In those early days, I had to begin searching for every small blessing I could find. Looking for things I could be grateful for has gotten me through every tough day since. I’ve been trying to do that with these seizures. But some days it gets pretty dang hard to do that. And then, Garritt, walked into my office and blew me away with something I could never have even BEGUN to imagine.

He told me they had been researching seizure dogs. Seizure dogs are especially helpful for those people who can’t take medications. Dave is the perfect case for a seizure dog. But, as I mentioned above, seizure dogs are incredibly expensive AND hard to come by. Not to mention that Dave is allergic to dogs, which is why Ronnie’s two dogs have always ‘lived’ downstairs or in the ‘man cave’ in the garage. Garritt proceeded to tell me that someone had offered to buy us a seizure dog. He told me this person knew someone who trains and raises seizure dogs. The trainer called Garritt and asked him a bunch of questions. When he found out Dave also had autism, the trainer said, “ok I will train the dog on autism too.” Garritt indicated that Dave was also allergic and the trainer said, “no problem, I’ll call my poodle breeder.” Garritt sat there telling me this story that I couldn’t believe. It seemed like a dream. All of the emotion I had inside of me came bursting out. I was flabbergasted at the incredible generosity of these amazing benefactors. I didn’t even know what to say.

A down payment was given to the trainer the next day. Dave’s dog is ‘on order.’ It will take about 6-9 months to train the dog. And then we will have to fly to where the dog is, and stay there for a week, so they can ‘pair’ Dave with the dog. I am so incredibly thankful, grateful, shocked, in awe … I literally don’t have enough words to express the debt of gratitude I have for this monumental act of kindness. I am forever indebted; to this couple, to my family, to my friends … to everyone who has shown love and empathy to our boy, and our family, over and over and over again. The trials of autism and epilepsy suck. I truly wouldn’t wish this life on my worst enemy. But by the same token, I would never have witnessed the outpouring of boundless love and selfless empathy without living this life. Such incredible blessings in the face of such trying adversities. And for that, I am beyond, and forever, thankful.