May 2018 archive

I’m losing my son to Childhood Disintegrative Disorder

This was a very difficult video to record. I did my best to hold it together but talking about Childhood Disintegrative Disorder and how it’s impacted my oldest son, Gavin, is incredibly painful. CDD is a very rare and regressive form of Autism. A child will develop typically, hitting appropriate milestones and then one day, …

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We’ve arrived at @AkronChildrens Hospital for pre-testing

It’s not even 7AM and we’re sitting in the lobby of the surgery wing on the 4th floor of Akron Children’s Hospital. This is an appointment that we’re a bit nervous about because we aren’t sure how Gavin’s going to react. The whole point is to go over the details of his upcoming scopes, make …

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I totally need to sleep tonight

I’m going to bed early because we’re starting our day at 5AM. It’s going to be a long morning and I’m not sure how it’s going to go. I haven’t been sleeping well and I’m hoping to get enough to make battling traffic something I can handle. lol The boys are at my parents house …

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We overcame one of the challenges in regards to Gavin turning 18

We were able to reconnect with Gavin’s MyChart account this week. When he turned 18 this past January, his account was closed and he needed to open up a new one. MyChart, for those unfamiliar with it, is an app that connects you with places like the Cleveland Clinic and Akron Children’s Hospital. It gives …

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Even if we had the power, would it give us the right?

We have a conundrum and aren’t sure what the right thing to do is. In less than 24 hours, we return to Akron Children’s Hospital for pre-testing and consultation in regards to Gavin’s endoscopy and colonoscopy, which is a bit more complicated because of Gavin’s health issues. At this point in time, Gavin either doesn’t …

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The best I can do is always be there for him

It’s been a long and exhausting day. Gavin has been struggling a bit and I have to tell you, as frustrating as his behaviors are for me, the most overwhelming emotion I feel is heartbreak. Gavin drives me completely bonkers. I’m not ashamed to admit that and I own it 100%. At the same time, …

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