No one expected Alicia to live this long. At eighteen, her body has weakened, though her brown eyes stay clear and her wit sharp. She sleeps much of the day, her legs never hold her weight anymore, and she has a permanent feeding tube.
Cerebral palsy turns a body into a train wreck. Palsy victims drool and twitch and cry out in raw moans. Although some may learn to move or communicate with assistance, many never walk or speak an intelligible word. Alicia and her sister Amber were both afflicted, but Alicia suffers from a rare form that breaks down her cells’ basic mechanics. Slowly, system by system, she loses function. When her cells no longer remember how to make her lungs inflate or her heart beat or another organ to perform its essential function, she will die.
But she didn’t die this day. Amber did.
We had tried to prepare ourselves to see Alicia lying on her last bed, even pictured her pale and still, or bloated and bruised. Against the odds, though, Alicia still lived. Amber lay on that bed instead and the world tipped, lost its balance. We had to grab on to something steady ourselves, but we also had to consider Alicia. Somehow, we had to tell her about her sister.
We learned not easily and long ago that Alicia has a broken body, but it is filled with a whole soul and ascendant spirit. She loves color red and gospel music. She hates baths and couldn’t care less about how her hair looks. She always wants to talk on the phone and laughs at corny jokes. At fourteen, when she fell in love for the first time, she held her beloved’s hand and said his clear name. “Dave.” She sings in church and knows to pray. When she hurts, her sobs burn and tear. We knew she would cry now.
We were crying already, crowded around that sad bed, holding Amber’s too-quiet hands, watching the nurses free her from needle and tube.
“Father God, you work all things together for good for those who love you. Show us the good in this,” we prayed while Alicia waited, her wheelchair past the line of sight, facing the open door. She looked tired. Her hair stood up in tufts as usual. Her eyelids drooped until we walked in. Her formula pump beeped slowly against the silence, like breaths.
“Alicia, I have something very important to tell you.”
She lifted her chin and her hands twitched.
“Amber isn’t coming home with us.”
“She’s with Jesus. She’s not coming home because she’s in heaven.”
Alicia’s eyes grew round and cleared. Her mouth opened, exultant with delight. Her arms, for once, obeyed her command and flew above her head in triumph and praise.
“Yeah……!” she cried. “YEAHHHHHHH…!!!!”
Through Alicia’s eyes rushed her vision of Amber, running free from pain, brace, and wheelchair, turning her broad grin to everlasting light. Here Alicia’s constant hope became Amber’s reality, and she gave it to us that day by God’s gift. Alicia knew better than we that mourning might come later, but this day, we must celebrate.
Now, a year later, Alicia sometimes cries, missing Amber. The bittersweet mix of memory and loss can still gently take hold and cloud her brow. That day, however, she carried a gift directly from the lap of God and laid it glittering at our feet. That day, the Holy Spirit answered our prayer and showed us good from Amber’s death. That day, we took a glimpse beyond the veil through Alicia’s eyes.
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