Becoming a "special needs" mother

I've been considering this whole idea of being the mother of a special needs child for about a year and a half now. As Aaron and I moved toward adoption of a baby with Down syndrome, I had a lot of questions to ask myself. I pictured myself in every imaginable scenario, and came to my terms with it. Felt comfortable with the idea.

And then one of my already-known, already-born, already-loved children developed a brain infection, and then damage, and finally seizures. For a week now, we've dealt with our first season of "clustered" seizures - more than 2 in a 24 hour period. Amy's had seizures while I'm driving down the road, slamming the truck into gear on me with her flailing feet. She's had seizures at VBS and pee'd all over nursery. She's had seizures playing outside, sleeping in her bed, laying in my arms, eating her breakfast, and in the bath. Every activity is riddled with new dangers and difficulties. What used to rub me raw with the sheer mindless routine of it - meals, diaper changes, baths, dressing and undressing these warm little bodies over and over again - is now not boring, but painful, difficult.

I've been stared at on the side of the road when I'm dragging her out the tailgate from the backseat of a minivan during a seizure (note to self: buckle seizure-prone children in an accessible car seat!). I've had to comfort her as she shivers, wet and cold, after being pulled suddenly from a warm bath. I've had to sweep chunks of bread from her throat while her teeth clamped and unclamped when she seized while eating.

This experience does not wring from me a cry of, "Why, God??" There are no words to the lament it wrings from me. What He created so perfectly - this intelligent, beautiful, personality-filled, sweet, hard-working, sensitive, and passionate baby girl with the lilt to her hair - has lain so limp in my arms this week. Her beautiful kalamata olive eyes are drab and unfocused, her throaty voice is so often simply repeating one word endlessly as her brain fires in a loop from which it cannot break free. To say my spirit groans for her losses is an understatement. To watch the beautiful become broken excruciating.

Many have told me they don't believe this will last. I pray that is true. The glimpses of Amelia's spirit have come so few and far between this week. During the music and dancing at Vacation Bible School, there she is, suddenly - the little girl we've all been missing, stomping to the music, and singing in a baritone scraped husky by the many, many times she vomits every day.

Where, Lord, are you today?

Do you see her stumble, head hitting timber

You say you are in every place

Where is your mercy here?

Do you hear my voice call, ragged?

Do you place a gold piece in keeping

as my sore knees bend again to clean mess

a piece of silver for every tear I'm weeping?

Rescue us before we drown in this river

of grief that flows from souls, lashes -

stand in the way of tragedy -

before it all once again crashes

as we tumble together through familiar pain.

She is broken, body, mind

But our souls are nearly empty

faith is elusive, suffering anger-lined.

Dare I compose a song

that asks questions I know have no answer?

There is nothing visible left

which to lay upon Your altar.

You told me once that when my words are gone

You groan for me and plead

for this broken, beautiful, besieged girl.

And so, I hold my creed.

Cover worn, pages torn.

The bandages that bind the broken

become more sacred after we bleed.