A Laugh

Normally when a kid laughs it's a good thing. Who thinks of a child's laughter as bad?? When Matteo was maybe 3 years old he started to do this weird laugh. He couldn't control it and you could see the fear in his eyes. I was the only one who noticed it for a long time. I finally convinced Zach we should take him to a doctor and the pediatrician said it was "just a phase". That his child did the same thing and Matteo would grow out of it. He did say it was like a tic and we could come back in a few months if it didn't go away. However, the doctor was convinced it'd go away. It did come and go for a while. He'd have episodes for a few weeks, we'd set up an appointment, and then they'd stop by the time we got in. So frustrating. We finally got a referral to a children's hospital in Utah. They couldn't find anything and continued with the tic theory. Zach was finally noticing it and so were people he'd be around. It got so bad we'd have to warn people who'd care for him. No one took it seriously. It was just a laugh. Every time it would stop and come back it would add on symptoms. The side of his face would go numb, he'd bounce all over the place, he could control the volume in the beginning but it got were he couldn't control it, he'd wet the bed (only when he was having them at night), they'd be mostly during the night but sometimes during the day..etc. I still have a hard time sleeping. It was so scary knowing how often he'd have them at night. He'd have them up to at least 17 times a day on a bad day. You don't really get how bad it is to be "that mom" until it happens in public. People just thought he was super excited and really loud. He's had a ton of EEGs and an MRI. Most of the times they wouldn't find anything. When we moved here they FINALLY saw it. His doctor in Alabama actually had to catch him from falling off the table during an episode. We had been told the whole time that it was definitely not seizures until we saw this doctor. He did a lot of tests and finally diagnosed him with abnormal seizures with physical and vocal tics. Normally tics don't happen at night and that was really throwing them off since most of his episodes were at night. Turns out it was all together. They're still running tests to diagnose which spot the seizures are actually in and the journey is far from over. However, it is sooooo nice to finally be validated. It's been a long journey just trying to get someone to take it seriously. We had doctors tell us to YELL at Matteo to snap him out of it. We had doctors tell us we were too strict and that's why it happened. We had people tell us to ignore it. Zach said Matteo was faking it. Do you know how good it felt to have someone FINALLY tell me that I wasn't crazy and that something was wrong?? Granted, hearing something is wrong with your child SUCKS, but I just wanted him to get help. I wanted him to be heard and right now, I'm his voice. Matteo and I have always had a crazy close bond. Watching him go through all this has killed me. Knowing that his brain could be permanently damaged from all the seizures the DOCTORS blew off, kills me. Matteo is one of the sweetest kids you'll meet. He's on 10 pills a day now and it's still rising. He still has several more tests they want to do and he's currently doing a 5 day stay at the hospital for a prolonged EEG. The hardest part is I can't always be there. We don't live near family and I do still have 3 other kids (all in school) that I need to take care of. A lot of the time Zach will take him and it breaks my heart the whole time he's gone. His doctor is over an hour away and his EEG is over 5 hours away. I feel like such a shitty mom for not being with him. I go as often as I can, but like this trip, it's easier if Zach goes. Trusting doctors or anyone with him is really hard too since so many people blew him off. Even close friends. I get it though. It was hard to see. Even in the videos it just looks like he's laughing. If you look closer though, you can see his eyes are far from happy. I never considered myself a special needs mom. I still refuse to. Matteo is just Matteo and we'll help him the best we can. I will continue to fight for him and all of my other children. I never thought a laugh could hold so much power. I never thought a laugh could break my world. Trust your mama instincts. We know our kids and what is or isn't normal for them. We are their voice. I've never been a fighter, but you better bet Mama Bear will come through when needed. Hugs to all you mamas going through this yourself. It's exhausting in every sense, but these kids are oh, so, worth it. <3