text: A single tear drop slowly rolled down my cheek. I quickly wiped it away before Mattie could see, but his eyes were already on me. Mattie looked up at me with his wide brown eyes. They sparkled, ignited by everything he held in his mind. His lips were slightly turned up at the corners, smiling at whatever created that ever-present glint. I could tell he didn’t register that I was crying, so I let out a quick sigh of relief. “Okay, Mattie!” I swallowed the emotion threatening to clog my throat. “So, first; I’m going to put you in your safety seat, then buckle you in, and then we’re going to drive home.” Mattie simply stared. Ignoring the prickling sensation of my tears starting to well again, I started digging in my pocket for my keys. I felt my fingers wrap around the cool metal and pulled them out. Due to medical expenses, we could no longer afford both of our previous cars, so I downgraded to an old Kia Sephia I managed to get for $500. It’s a very plain, small gray car and it’s proving to be more trouble than its worth. Meanwhile, Jason decided it would make more sense for him to continue making payments on his 2019 Chevy Tahoe because it made everyone at work “take him seriously”. I put the key into the driver’s side door and twisted it clockwise, praying to God it wouldn’t jam again. “Chik!” I released my breath. I opened the door and stuck my hand behind the seat to reach for the rear door’s lock. I felt my finger brush against the raised edge and gently pushed. “Chik!” Picking Mattie up, I opened the rear door and slowly bent down to place him into the booster. The booster had been installed by firefighters, but they had placed the booster directly in the middle of the backseat. It had been fine two years ago when Mattie was 3 and still small, but he was much bigger and longer now which made it quite the challenge. I carefully placed my hand on the back of Mattie’s head and maneuvered him around the door frame making sure to angle him far away from it. A child hitting their head is serious in any situation, but with his recent seizures, it could prove to be fatal. Once Mattie was secured, I grabbed the black straps and clicked them into the red buckle, making a small fart noise with my mouth while doing so. “Phbt!” This got Mattie’s attention. His naturally wide eyes widened a bit more and the corners of his mouth stretched upwards just enough to expose his tiny white teeth. “Teenth skarl zeben thar mmm!” Mattie exclaimed and wiggled his fingers. “Oh, so now I have your attention?” I laughed. “Okay, so now I’m going to close the door, get into my seat, and start driving home.” I slowly backed out and straightened myself out. My arms were already feeling tired from briefly holding Mattie so I lightly stretched them before gently pushing the rear door closed. I peered through the window and noticed Mattie was still wiggling his fingers. It’d be a while before I managed to bring him back to my reality, but at least he’ll be able to keep himself entertained on the ride. Mattie typically doesn’t enjoy car rides because of all the sounds, lights, and colors. The drive from his doctor’s office to our home ranges from 30-35 minutes and he tends to scream the entire time. I’ve tried using headphones, an IPad, and even a sleep mask to distract him but nothing ever works. Only when his eyes start sparkling, his fingers start wiggling, and his face breaks into a smile is when he no longer fears the drive. I think it’s because he mentally removes himself from this plane and goes off to play in another. The doctor calls it stimming, but I consider it as more of an episode of sorts. Most times it’s your standard 30 minute runtime, but there are the occasional 45 minute specials. Those occur when he’s very excited or spontaneously set off by something. Normally he responds to his name being called, albeit it’s simply eye contact, but that’s a response in and of itself. However, during those episodes, I could be screaming at the top of my lungs just for his attention, but he doesn’t hear a thing. Hopefully, this car ride will be one of those times. I eased myself into my seat and buckled in. This car is old and only has a radio without an auxiliary port, so in order to use the gps I have to prop my phone onto a mount and put the volume at the loudest level. My phone usually overheats when I play music with my GPS going, so most of the time it’s just me, Australian Siri, and the vocal stylizations of Mattie. Just as I was about to click ‘Start Route’ for home, Jason’s face flashed across the screen. Seconds after, a low, tuneful jingle started playing. I don’t enjoy the small selection of ringtones iPhone has, so I immediately tapped on the green button. “Hey, Babe.” Jason’s voice played through the speaker. “Hey. I want you to know that I am about to drive home, you are on speakerphone and Mattie is here in the car.” I always let Jason know when Mattie is around just in case he wants to talk about sensitive information. It’s still a relatively new thing because before now, I never knew if Jason was calling because he wanted to simply talk to me and hear my voice, or if he wanted to discuss Mattie or something serious. Recently, if we do talk, it’s only ever about Mattie. And it’s always something serious. “Oh great. Hey bud! It’s daddy!” I glanced back at Mattie but he was still looking at his twiddling fingers. “Did he... react... or something?” Jason asked. “No. Sorry. He’s off in Mattie-land right now.” I smiled and chuckled a little. Jason sighed into the phone. There was a long pause. I felt my smile slowly fade away. “So, if he’s not paying attention, that means we can talk freely now.” Jason sighed again. “Yeah, I guess.” I said, glancing back at Mattie once more. “What did the doctor say? Why has he been having so many seizures recently?“ Jason’s tone was urgent, but I understood why. I felt my throat start tightening as I remembered why I was crying. I swallowed in an attempt to get some moisture back into my suddenly dry mouth. “He-He said...” I took a deep breath. “He said that he’s not too sure about whether the autism diagnosis had been the correct one. They’re running some tests but they think it might be something else.” “What? So let me get this straight..” Jason’s tone got low and harsh. Although the anger wasn’t directed at me, it still stung to hear his voice in that way. “They’re telling us that the diagnosis we have been living with for the past two years, the one we have poured most of our resources into in order to get the best therapies, the best education, the best damn doctors for, was wrong?” “Yes.” I heard some crashing from the other end of the phone. Jason was still at work, so there was no mistaking that what I heard was him angrily throwing things off of his desk. He was never an angry man, but after Mattie’s diagnosis, our financial struggles, and the dilapidation of our family as it once was, the anger slowly took over. He tries not to show anything around Mattie or I, but I smell the alcohol on his breath when he goes in for a kiss. I smell the light floral notes mixed in with the sandalwood musk on his work shirts. I see the bruises on his knuckles when he returns from a “work trip”. I know and I see it all. “Well that’s fucking fantastic--“ Jason hissed. “Hey, hey! Language. I already told you that you’re on speaker.” I quickly lowered the volume a bit. Even if Mattie isn’t paying attention, I don’t want him to wake up one day with a bunch of curse words flying around in his brain. “Like it matters? He can’t even--” Jason paused. I could hear him taking deep breaths to calm himself down. He didn’t finish his sentence but he didn’t have to. I already finished it for him. “I’m sorry. Sorry.” Jason cleared his throat. “So what is it? If it’s not autism then what could it be?” “The doctor said that he’s currently suffering from something called... hold on.” I grabbed my purse from the passenger seat and started rifling through it, in search of the pamphlet the doctor had handed me on our way out. He instructed me to read the pamphlet in order to grasp the complexities of this situation. This was in response to me insulting him and the nurses for screwing up Mattie’s diagnosis. “Okay, so I have a pamphlet.” I started reading off of it, but it was too dense, so I switched to paraphrasing. “Mattie is currently suffering from ‘Convulsive Status Epilepticus’. Which he has in conjunction with what they believe is not severe autism but Landau Kleffner syndrome. Apparently the similarities between Autism and LKS are so high, that many kids get misdiagnosed with autism first. LKS is also very rare but is more typical in boys. The issue with Mattie is that these seizures he is experiencing are very dangerous, potentially fatal, and usually occur with older kids 7 and up. At 5, Mattie is in need of dire help. We have to monitor him around the clock and especially when he’s sleeping which is when the seizures are most likely to occur without indication.” Jason stayed silent. I wondered if he had started searching it up while I was reading to him. That’s what he did when we received Mattie’s initial diagnosis. He wanted to know everything about the disorder to see if there was a way we could come out on top. He’s a businessman always trying to find solutions. That’s just how he is. “And how are we meant to monitor Mattie 24/7?” Jason’s voice was low again. Though this time, there was no anger. He just sounded tired. That made it sting even more. To hear the man who once forced himself to eat a 20 pound hamburger in thirty minutes because he was determined to win a novelty t-shirt. The same man who threw up for 5 minutes afterwards in the parking lot but still prided himself on not giving up. To hear that man sound hollow and defeated hurt more than I ever imagined. It forces me to face that he’s no longer Jason, just a hollow shell. “We have medicine that will be delivered in a few days and Doctor Straum is ordering a EEG headset that will help us temporarily monitor Mattie’s brain activity. We may have to take shifts at night where one of us sleeps and the other stays up to monitor until we get the medicine. I don’t think we can afford either of us taking any days off of work. There’s going to be a whole new wave of tests, therapies, treatments and we need to be able to afford it.” I started rubbing my temples, stressed out by the insurmountable debt we’ll most likely accumulate from this. “Okay, well thankfully tomorrow was already a scheduled day off for me, so when I get home tonight I’ll take the first shift and you can sleep.” Jason responded. “Really? Just like that?” I was surprised. Usually there’s some pushback on these things. “Yeah. You know, from the looks of it, most kids with LKS have some delayed cognition in speech but when paired with the proper medication, they can get to a place where they’re seemingly normal. If we manage our expectations but do our best, we might be able to hear Mattie say “Mom” or “Dad” again soon.” Jason laughed lightly. It sounded hopeful. Tears started welling in my eyes again, but for a different reason. Jason was still Jason after all. Could it really be possible that Mattie may once again be my Mattie? The Mattie I spent the last two years mourning? Unfortunately, I could already feel my hope scratching its way to the surface of my heart. Despite the intensity of all of the doubt, pain, fear, and distrust my heart harbored; my hope was holding its own. “Yeah. Maybe soon.” I smiled as the tears made their way down my face. A gentle sob escaped through my lips before I could stop it. The tears started flowing faster. Within seconds, I completely broke down. In this moment, everything that had been building up throughout the years was finally being released with hope as its catalyst. I’m aware that things may get worse or that this could be another misdiagnosis. Financially, Jason and I are near ruin and our romantic relationship is in tatters. But in this moment, all I can feel is relief. It’s rather dim, but I can finally see the light at the end of the tunnel. “I have to go, but I’ll see you at home.” Jason’s voice floated over to my ears. It was cracking with emotion. I know he can hear me crying, but it’s funny because it seems as though he may be crying as well. “O-okay.” I choked back a sob. “I’ll see you at home.” I waited to hear the familiar ‘beep beep’ of the call ending. But instead I heard a soft; “I love you.” And so I responded; “I love you too.” Beep, Beep.