Rebranding His Story

As we get closer to Austin’s 12th birthday, I felt the urge to change the name of Austin’s Facebook page to better reflect his story. I feel like we aren’t in the more desperate phase of “Praying for…” anymore. (I mean, prayers are always accepted, needed even, obviously.) 

I mean I heard myself accidentally say out loud to my husband the other day (more or less), “I finally feel like Austin is going to be here a while so I bought him his own puke rags with name labels!” So, yeah, it landed just like you think it did. 😂

I realize how weird it sounds and like I’m an awful mom, like I haven’t loved him fully. 

But being told Austin wasn’t going to be compatible with life and that he wouldn’t  or shouldn’t survive, I guess I’ve existed on the brink of constant anticipation of loss for years. And, for me that translated into building a wall around my heart and mourning early and often so maybe it won’t hurt as much if such a loss actually occurred. 

Well, I guess with almost 12 years of surviving, Austin has ‘maybe’ convinced me that I can chip away at my wall a little and perhaps stop mourning his loss while he’s literally alive and lying next to me. ❤️

I mean, when you think about it, he’s really just been such a trooper all these years; choosing life over and over again even when things seemed dire. So there’s no reason at this point to expect anything different from him. He’s going to fight to live. That’s just who he is. 💪

So that’s why for now, I’ve changed his Facebook page name to Austin Chase: A Choosing Life Story.

Let’s all sit with it and see how it feels. ☺️

On Brain Hemispheres, the Corpus Collosum, and Consciousness

This is for my science-y peeps who probably roll their eyes every time I mention crying. Well, read on my logical, reasoning, questioning, Spock-ish friends! No crying today.

I’m just always curious and never satisfied with what I know. I feel like there’s always something more. 

So ever since finding out about Austin’s Dandy Walker brain malformation, I’ve been interested in all things brains. Some of Austin's most interesting brain descriptions include the following:

• Dandy-Walker malformation with large posterior fossa cyst
• Macrocephaly
• Hydrocephalus
• Agenisis of cerebellar vermis
• Agenesis of the corpus callosum
• Severe brainstem hypoplasia
• Mild cerebellar hypoplasia-left greater than right
• Large multiseptated supratentorial cyst
• Decreased supratentorial normal gray matter structures
• Gyral abnormalities with heterotopic gray matter in bilater cerebral hemispheres

Well, this morning I was reading some super cool stuff about right and left brain hemispheres and how it's possible each hemisphere might have its own consciousness and reality, but because the left typically has speech, it might be the only side we "hear", while the right side might not be acknowledged because it is essentially "silent". 

And between our hemispheres are fibers called the Corpus Callosum. It's the part that connects the two sides of the brains and sends info back and forth. These fibers existing between our brain hemispheres might also be the reason we perceive a complete unified identity rather than two separate identities. 

However, Austin has the above listed 'agenisis of the corpus callosum' which means his fibers are absent or diminished. 

So do you can see how this gets interesting? Does he have two personalities? Does he have two consciousnesses? Can he switch between them based on which side of his body is receiving input or stimuli? 

I don't know! But what if?

So if you want to play along, read the attached excerpts from the book I’m reading on my kindle, Waking Up by Sam Harris (he's a neuroscientist and philosopher) and tell me what you think! 💫🤔🧠🧐