Blue Sky July

Upon a recommendation from the Kidz Krew, I recently read a memoir entitled Blue Sky July: A Mother's Story of Hope and Healing, by Nia Wyn. Nia's story really resonated with me and I was able to read the book within a couple of days. Her words paint the story of her journey through her son Joe's first seven years (who has severe cerebral palsy), told in a style which is more like poetry than a memoir. Honestly, I've never read anything quite like it.

More than anything, it's a story about a mother's love and the lengths a mother will go through to give her child the best life possible.

This quote really stuck out to me and I loved it so much that I folded the corner of the page where these words were written (please don't tell the library, ha!):

As we pass the running children who hold up their heads so easily, I realize miracles are so commonplace we barely recognize them anymore,
and near the circles of mothers who anxiously comparing milestones at the
school gates, I see how we live in a time where normal is never enough,

and we are never full.

Joe gives me insights I could never have understood without him, and he gives me
heartbreak.
To separate these two responses would be impossible. He is
equally beautiful and equally terrifying(pg. 42).

So beautifully written. Miracles are all around us and we can't even see them most of the time. Be the one to see them.

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It's Complicated

When it comes to the brain, it's complicated.

And confusing.

We don't really know what Elijah experiences. We do know that he doesn't experience his life the same way the rest of us do. It leaves me confused, wishing that I could spend some time inside his little body to better understand how he experiences this world.

He can see, but we don't know how much or what or when he's seeing. I'm often amazed at his ability to navigate without running into things. And at other times, I'm amazed at how much he doesn't seem to see at all.

He can hear, but we don't know if his brain is processing the information as it should be.

He can feel pain, but his brain doesn't seem to know what to do with the information. That leaves Elijah with a seemingly high pain tolerance. Which, by the way, sounds awesome, but it's not.

He can process his food, but his digestive system is a lot slower than most of us. Elijah's brain doesn't tell his stomach to empty as fast as it should.

He can communicate, but not with speech. It's often in subtle, unconventional ways and you might miss it if you're not paying attention.

He can interact with kids, but he doesn't know what to do with them. He often scares them and my heart soars and breaks to watch him trying.

You see? It's complicated. Elijah has a lots of can-dos, but they're all complicated by the brain's inability to know what to do with the information, which frustrates me. The brain is always changing, forming different connections. That knowledge gives me hope. But, the brain in it's complicated-ness makes life frustrating. It affects every single aspect of a person's life, from digestion to speech, from mobility to vision to hearing. Every.single.aspect. Whatever you do, protect those little noggins.

Because when the brain is hurt - it's complicated. And confusing. And sometimes frustrating.

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