Tag: picture stories

I Will Always Be With You

He has a new phrase: “I will always be with you”.

When he says it, he is quiet and centered, strangely introspective – unlike his usual energy-filled self and it means his heart hurts. It means he understands separation and he wants to stay together. But in typical childhood fashion and typical outside-the-box Chase fashion, the words come out differently.

He clutched my hand, fighting the drugged sleep threatening to take over his conscious thought and whisper these words to me – “I will always be with you” – as he went in for his MRI last Monday. But it was the night before that the words first stuck to him and he asked if I would write them out, not for him, but for his siblings. Then he put his head in his hands and sat cross-legged on the kitchen counter, just staring at the part of his heart that they’d discover in his absence the following morning.

The kids fight and squabble, and a good eight out of ten times, this bald boy is the instigator, but in the tense times, they rest in each others arms and love and they write out their love for each other because, well because “I will always be with you”. Somehow, reassurance of presence is, in itself a comfort. And somehow, the not quite sense-making words of his hurting heart are the ones that make the most sense – because he dares to stop, breath deep, and say them aloud.

Don’t miss the opportunities you’ve been given to connect with the ones you love.

~MbM~ 

Bacon Philosophy

In this outside-the-box life, the brain tumor cut deep and far into the language center. Though Chase’s brain bravely held it’s ground and kept it’s words, sometimes, he experiences what appear to be gigantic non sequiturs. A word or phrase comes into his mind and he wants to…and even needs to say it over and over, but it’s not always apparent why.

In the days following the initial surgery trauma, it was most pronounced as he’d lean his two-year-old little body close to me and gleefully warble “Congratulations!” again and again – like a greeting and a benediction.  Congratulations, indeed, my sweet boy…you survived major brain surgery.

But this new year, this new season, as he sits at the table munching turkey bacon -his always favorite- in his winter jacket, waiting for the bus to arrive; his brain comes up with the best yet…

“Mom,” he sighs; “You aren’t getting any younger.”

I sit back and laugh incredulously. “Chase! Do you even know what that means?”

The rest of the turkey bacon stuffed into a cheek, he chews contentedly and thinks aloud. “No. Not really. But I think it probably means that you’re getting younger. But also, not really.” And then he reaches over and pats my arm, repeating “Mom, you’re not getting any younger, but it’s okay. I love you.”

And there it is. Love helps us make the most of our time.

~MbM~

 

Attempting To Learn

The traumatized brain is an outside-the-box thing.

The paper he brought home from school was too small and structured a practice space (so thankful for the kitchen chalkboard wall!) and he wouldn’t get even one single of the ten words right on the spelling test several days after I took this picture, but he practiced and he TRIED.

After a long day in the classroom, he was willing to come home and re-bend his brain to the shape of letters, re-work his hand muscles to hold the chalk, re-will his short-term-reticent brain to remember these new words that need to mean something to him.

These small tasks that I can do in my sleep cost Chase’s brain space dearly. These sleep action for me are coaxed into Chase’s ability only with years of practice and rounds of expert therapy teams. Even the ability to curve a letter (like the first in his own name) is a fixed and practiced thing, refined  in the fires of frustration, tears, and intense determination.

Sometimes this life isn’t about traditional success, but rather extraordinary effort – an incredible victory in and of itself. This moment; it isn’t about the memorized words or the score on his test, but about him pushing through “I can’t” to “I will” and “I did”. In an outside-the-box existence, sometimes the attempt is greater than the accomplishment.

This boy… he changes how I see life.

~MbM~

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