Autism Today Foundation

Angel Havens in the Clutter

As a Filipina-American, I need my home to reflect my heritage, my desire for a well-ordered haven. So I trek hours through stores and catalogs to perfect my “House Beautiful.” I’m ever on the hunt for clean designs with an Asian twist. Whenever I express a desired need, my special son Peter chides, “Just another excuse to go shopping, Mom. Another excuse, Mom.” Dark eyes in his tanned face melt my heart and keep me from scolding him back, most days.

One day I set aside the catalogs, the shopping trips, and did something too rare.  I visited our neighbors, the Browns. We first met them when ours was the newest home on the subdivision block. The Browns watered our new grass while my husband, Andy, and I closed the sale of our old house in another state. They built their home a year before ours, so they understood the mishaps and mess of finishing a new house in a dusty construction zone.

Actually, I walked across the street knowing my neighbors were gone. Nicole and Ken left with their youngest child for a well deserved vacation in Florida. Their parents stayed at their house, caring for pets and Ashley.

Inside Grandma Colleen led me to see the precious seven-year-old, buckled and asleep in her high chair. Brunette tufts bubbled out like a fountain from her ponytail band. Her grandma beckoned me to sit, then said, “If you rub Ashley’s neck and massage her temples like this, you can open her eyes.” Like a porcelain doll, her lashes blinked open to reveal big eyes. Her brown pupils turned all the way to the right. Her cherry lips were kissable, yet wordless. 

Grandma mashed a banana and announced, “Time to eat, Angel Face.”

Angel Face was born with rare syndrome that scattered the gray matter of her brain. She has never crawled or walked.  She cannot talk. She must be spoon fed  and changed. Because of frequent seizures she’s given a host of anti-seizure medications, along with anti-nausea pills.

Her parents are determined to keep her out of the hospital as much as possible, so  they’ve become her round-the-clock nurses.

After a few banana swallows, Angel Face bent her head to suckle her chapped thumb and pointer finger. As I stroked her thin arm,  Colleen said, “She’ll lift the corners of her mouth when anyone mentions Winnie the Pooh.'” I found myself smiling, too. 

Colleen had taken time off from her job to care for her granddaughter. This youthful grandma declared to me, “It’s an honor to serve her.”

I glanced around at the great room, almost as busy as Pooh’s Hundred Acre Woods. Tiggers and toys spilled over the white sofas and the floors. Medications and bottles and cleansers covered the kitchen countertops. Unopened diaper packages sat beside us. Of course, the house was as sterile as could be, but the task of clearing out clutter yielded to intense, nursing needs. Still, in the midst of awful challenges, Angel Face thrives.

Two years before, my family moved 400 miles west to live catty-corner from this pretty girl. Suddenly, five months later, my own special child, Peter had a massive seizure. The shock of that November afternoon gave no hint of the grace to come.

My son was almost home, riding on the special-needs school bus. Outside the front door Bill Cook and Toby Bostwick, construction men whom Peter befriended, were on ladders painting replaced upper molding. 

I worked at my computer, listening for the sounds of key fumbles in the lock and Peter’s routine greeting, “Hi, mom! I’m back!” That afternoon, however, I heard a frantic knock which my daughter Jessica answered. Noting a strange voice other than Peter’s, I hurried to the balcony at our front entry. Between the two ladders stood Sam, Peter’s bus aide.  “Something is wrong with Peter,” he yelled to me. “He’s talking but he’s not making sense.”

“Oh, no,” Jessica and I cried in chilling unison. “He can’t be having seizures.” Peter had epilepsy from ages three to eleven, but he’d been seizure-free for six tranquil years. 

The Midwestern sidewalks were frozen, so I shoved my bare feet into socks and shoes. Toby and Bill rushed to my son’s side. Judy, the bus driver, had already contacted the school nurse and emergency services who arrived at the scene as I hurried to my teen’s side. His eyes were open, yet unfocused as he sat slumped by his aide. Bill and Toby kept asking Peter if he knew their names. I caressed his unresponsive face, while tears spilled down my own.

As the men lifted my teen from the bus, the paramedics asked me what hospital to take him to. I was so clueless. I didn’t know the name of any local hospital. I racked my mind as I stared out the bus windows.

Due to a prolonged, cold weather front, most folks in our subdivision kept to their cars or homes. But, on that oddly mild day, I caught sight of my neighbor setting up lawn Christmas decorations with her dad. I ran out of the bus, yelling for help. Nicole hugged me, then informed me about Sycamore Hospital, the best and closest emergency room. Then we hugged again.

Because we went to that particular hospital’s ER, my son went under the care of a friendly Dr. Simkins. Nicole didn’t know this doctor as he was a recent transfer to the area. He was also the new Medical Director of the Neurophysiology and Epilepsy Center.

Peter jokes and smiles when he visits Dr. Simkins. We couldn’t ask for a better doctor-patient relationship. Nor would we ask for a better neighbor, who understands the challenges and the honor my family has with raising a special child.

For me, luck is a four-letter word that explains little. But it is the five letter word Grace -God’s Radical Acts of Compassion Everywhere- that explains every blessed connection in our circumstances.

Angel Face and my son reveal to me a treasured truth. Despite my nature, I don’t need to work so hard to craft a haven for my challenged family. Grace and its Giver create our haven, havens of hope in the clutter here and in the perfect forever.

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