This is what #Schizophrenia looks like to my family

Over the years, I've tried to document the many things we deal with as a special needs family. It's important to me that I help to educate the public because there will come a time where I will no longer be here and I take a small comfort in the knowledge that my efforts today might make the world a more forgiving, understanding and compassionate place for my kids. That being said, I wanted to share this video I shot a few years ago. It shows Gavin, who's living with Schizophrenia, talking on an imaginary phone. This video is approaching 1,000,000 views and one of the more frustrating comments I see in regards to this particular video is that he doesn't have Schizophrenia, he just has an active imagination.  The reality…

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I hate seeing him upset like this

It's been a rough evening thus far, and it's only 6:30 PM. Gavin has had several freak outs since we've been home. A freak out is not the same thing as a meltdown because they typically don't last as long. Basically, this is what we call it when Gavin gets really upset over something and begins hitting himself or comforting his body. These things can occur during a meltdown as well but meltdowns typically involve screaming and a significant amount of emotional purging. When Gavin freaks out, it's usually because he's pissed off or frustrated over something. These incidents didn't last more than a couple minutes a piece but those few minutes are exhausting because we never really know what's going to happen. The reason he was freaking out was…

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Here’s what happened at @AkronChildrens today

We ended up not seeing the doctor we thought we were supposed to and while we were initially thrown off at first, we really like the new one.. There was a great deal of information but I'm going to make this as quick and concise as possible. Basically, there are at least a few tests that need to be done but there are some complications. We don't really know anything until this testing gets done. Unfortunately, because of Gavin's immunological problems, specifically the Neutrophilia, there's a significant increase in risk of infection from the procedure and until that's resolved, they won't do it. If he was having life threatening gastro issues, they would do it immediately and regardless of his ANC. She explained that what Gavin's needs is semi-elective at…

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We’ve arrived at @AkronChildrens Hospital

While the insane amount of never ending construction didn't make it easy, we have arrived at Akron Children's Hospital. Gavin's all checked in and we're waiting to be called back. It's really a strange feeling being back after all this time. Between Gavin and Emmett, we've spent so much time in this amazing hospital but it's been a minute since we've had to return. It's quite nostalgic to be here today.. I'm hoping this is going to be positive.

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I’m going to be doing this for the rest of my life and that’s scares the crap out of me

I love Gavin. I truly love Gavin. At the same time, the idea of having to deal with his challenges for the rest of my life is scary. I just dealt with a problem and he's still upstairs freaking out. Here's what happened. Gavin came out of the kitchen and told me that he needs to wash his water bottle again because the water tastes bad. I asked him what happened and he couldn't explain it. He had just washed his water bottle earlier today and he was unable to figure out why it rated so bad. As soon as he said that, I knew what had happened. Rather than letting him struggle to figure it out and end up melting down, I wanted to help him work through the…

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I feel like we’re off to a good start

The boys have been safely delivered to school and I've been to the track. I feel so much better after walking and I'm ready to take on the day. It was perfect weather for walking and while I had to push myself to go, I'm so glad I went. ☺ My Mom is going to be picking the boys up from school today and hanging out with them because we will likely still be in Akron. She was going to hang out with them yesterday but we moved it to this afternoon, in order to kill two birds with one stone.. We don't have to leave for Gavin's appointment until lunchtime, so I'm going to get some work done and maybe a load of laundry. Gavin is in a weird…

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The last time we were here, we received devastating news

Today is going to be one of the biggest days we've had in awhile, at least as far as Gavin and his health are concerned. Gavin finally gets back into Gastroenterology. We've finally come full circle and I'll explain why. It's been awhile since he's been seen and that's only because we were basically overrun with unrelated, but life-threatening health issues that took priority. Gastroenterology was actually what began a huge part of our journey. We made it to one appointment and within a week of that appointment, the Gastroenterologist called, telling us we needed to get Gavin into Immunology immediately. In fact he'd already made the appointment for us. He's the one who discovered Gavin's severely compromised immune system. From there it was a diagnosis of Common Variable Immunodeficiency.…

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A Gavin Update: It’s fricking exhausting

Gavin's been spending more and more time, locked away in his room lately. Some of this time revolves around his tablet and some of it around missions. He's not really talking about his missions a whole lot anymore. The last time he said something about them, was a few days ago and it'd been awhile before that. It's difficult to really grasp exactly what's going on with Gavin because while he talks constantly, it's not usually about anything meaningful. He never talks much about how he feels but instead talks a great deal about the games on his tablet. In fact, I don't think he knows how to talk about anything else. After the race yesterday, my parents wanted to treat everyone to some ice cream. It was the five…

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