Somewhere along the way, I stopped mourning his developmental losses so deeply.
Somewhere along the way, I stopped trying to force him to breach the gap between his peers.
Somewhere along the way, I have grown to see the beauty in his childlike spirit.
I watched him run about the yard with a friend yesterday. He still runs like a toddler, you know. His big boy body lumbering about with the motor planning and ease of a small child; there is a deep, unspeakable beauty in the way he runs. Watching a young child bounding joyfully about is lovelier than words. It's magical. That same magic still glows about and radiates from him.
There is a little place in a mother's heart that does not want her children to grow up and fly away. Trevor won't. He is my baby in the truest sense. That thought used to wrench my soul, and certainly, there is a sadness woven there, but there is beauty too.
I will never be alone.
His friendship is the sweetest, most guile-free friendship possible. In it, I see a glimpse of our wholeness that was broken. We weren't meant to be hateful, jealous, excluding, gossips. With an aching heart I have observed children much younger than he exhibit such unkindness, at times directed at him. Those things are not in him, much like they are not evident in a very young child. There is a simplicity in the way he loves. The way he just is. The beauty is remarkable if only one has the eyes to see it.
Today marks twelve years of growing eyes to see the beauty in heartache. To see the deep, precious value of his life. To grow towards peace with our companions, Sorrow and Suffering. I'm not sure when or even if I crossed that indistinct line. I only know that today I am not sad. Today, I am grateful for the gift of being his mom.
3 comments:
Beautifully expressed..
This was beautiful to read. My daughter is being treated for Infantile Spasms but her cause is genetic so we probably deal with seizures our whole life. Did you ever find the root cause for Trevor's condition?
When Trevy had his surgery, they were able to study his brain tissue and we learned that he had wide spread cortical dysplasia. We believe this was the underlying cause, though we don't know what caused the brain malformation. He did have an ARX mutation — but it was extremely mild and the first change of that particular kind ever found.
I haven't blogged in forever. It's poignant to see that families are still finding hope here.
Coincidentally, we're celebrating Trevy's 16th birthday (a tad early) today.
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