"Tell Me Something Good"

As I drove Melanie to preschool this morning, I tuned in to Dave and Carole on KLH (classic rock station) and heard the end of their "Tell me something good" segment. Listeners can call in or email with some piece of good personal news, for a happy contrast to most of the stories in the news these days. I wished so badly that I'd had a chance to call in this morning!

I realized a few days ago that Melanie's inflection-filled, unintelligble babble is.... gone!! When did this happen? Every word she says is a real word. Not always clear, sometimes not understandable, but no more "fluent aphasia," as Dr. H called it. Some phrases don't use quite the right words, such as "Mommy, where's a you name?" but who wouldn't understand exactly what she means? She's using whole phrases and forming entire thoughts with complete sentences, people! C'mon, say Melanie's newest favorite word with me: "BOOYAH!" And a few more: "Ha-wa-what?!" and "What you talk about?!"

She can repeat/copy any word- not perfectly- but hey, a year ago she couldn't even say two one-syllable words together with two different beginning consonants. ("Pink toe" was 'pih poh.') Now she can approximate "hippopotamus" and "upside down." A typical thought from Melanie's lips: "Jae, you sitdown here. You prayer, a brush-a teeth, a go nigh-night. Jae, come-a here!"

She can sing her ABC's! On pitch!!! (She's got better pitch than her brother!)  My absolute favorite sound in the world is Melanie's singing, along with her sweet voice playing in her room when she wakes up in the morning. I love to just lie in bed and listen to her through the monitor, talking to her baby, singing ABC's, "Baa Baa Sheep," reading her favorite books... That sound is like being wrapped in silky-smooth, freshly-washed cotton sheets-- only on my insides. Ahh, I just love it.

Thank you all for your prayers! You have no idea the magnitude of hardships Melanie and our family have been spared, considering her diagnosis. There is so much pain, suffering, sadness, frustration, tiredness and loneliness in these Dravet families. My heart breaks for my brother/sister-tiger parents, but at the same time rejoices over the wellness and great strides we continue to see in our little girl. Did you know that she is still in what are supposed to be the rockiest years for a Dravet kid? Between about 3 and 5, she's "supposed" to be having too many seizures and ER visits and ICU stays for respiratory infections and major regressions and GI issues and behavior problems and and and....

She's not following statistics now, and I hope she never does. No matter what, she'll always follow the course God has laid out for her. And no matter what, it will all be part of His good and perfect will.

Soli Deo Gloria