Kids are meant to be kids.  They’re meant to be care free and full of life. When you are a special needs parent to a child with fragile health, sometimes you have to do things that you don’t like, in order to ensure their health and well being.

That’s the case for the Lost and Tired Family, with our oldest Gavin. 

With everything that Gavin has going on and because they are so incredibly rare, there isn’t much known about the disorder’s. We don’t have a clear cut set of instructions or limitations that we should impose, in order to ensure his health and safety.

I want so badly to let Gavin just be a kid. 

I would love to be able to say to him, go be a kid. Go have fun.
Unfortunately, I can’t do that for him, at least not for right now.  Unfortunately, Gavin’s health problems dictate what he can and can’t do, instead of me as his parent.

The very sad reality is that sometimes,  a kid can’t just be a kid.

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