Even in bad times, listen for the music that is playing for us

  • Written by Claudia Parker

Claudia Mug Shot-Color There’s value in experiencing comfort from unlikely sources.
  My youngest daughter, Rhonda-Rene (age 3), is adamant about who she prefers between my husband, Don, and I. Especially when she gets hurt. Don’t let me be the first responder to a tumble if Don is nearby, she’ll contort her body until she’s broken free of me, to get to him. It leaves me left thinking, “Why won’t she let me comfort her?
  I suppose most of us have preferences for whom we’d rather be there for us when we’re hurting. When our preferred source isn’t available, it seems to magnify the pain, making us feel isolated and alone.
  Alone is just how my friend, Carmen felt when her husband of 35 years told her he was leaving. Not just leaving their marriage, but also leaving the country. Prior to this blindsiding blow, Carmen had been happy and upbeat. Her kids were grown and finally out of the house. She said, “This was the opportunity for reconnecting, traveling, and exploring new things together.” Now, she said she questioned her entire future. She was devastated. The only solace she could find in that moment was in God. She fled her house on foot and into an unfamiliar parish not far from her home.
  With no parishioners present, Carmen sat in an empty pew for two hours, crying uncontrollably. With a spinning head and puffy, red, eyes she finally gained enough composure to hear music coming from a distant room. “What’s that?” She asked herself, as she walked toward the harmony delighting her soul.
  It was a full musical band playing worship music. A small crowd of people attentively tuned in as they played. Carmen eased into a seat near the back. Once the musicians came to a close in their performance, one of them bellowed into his microphone, “Let us welcome our new sister.”
  Carmen glanced from side to side looking for who to acknowledge but all eyes gazed back into hers. This group then stood to their feet, greeting her one-by-one with a full embrace. In an instant, the flame to her anguish was snuffed with love from these unlikely sources.
  Carmen’s experience was an inspiration to me.
  Less than a year ago, I was dealt a painful blow myself.
  Little Rhonda-Rene’s diagnosis.
  She has special needs. She’s considered globally delayed with a sensory processing disorder and also has a finger deformity on both hands. The most severe impact of her disability is her speech, she has Apraxia. Childhood Apraxia of Speech (CAS) is a motor speech disorder. Children with CAS have difficultly vocalizing sounds, syllables, and words. The brain insufficiently plans movement of the lips, jaw, or tongue needed for speech. Receptively, the child understands language and knows what they want to say, but his/her brain has trouble coordinating the muscle movements necessary to produce those words.
  For people known to have Apraxia, an intense therapy regimen is likely to bring about improvement. However, the root of Rhonda-Rene’s overall diagnosis comes from a gene mutation called FOXP1. This gene is one of two, dominant for language. According to the Baylor College of Medicine, Rhonda-Rene is one of seven children in the nation to have this specific mutation. The geneticist said, “We don’t know if she’ll ever be able to speak.”
  I tried to nod throughout the remainder of our conversation but I didn’t hear anything else after that. Mentally, I was like Carmen, sitting in an empty, church pew, desperate to understand God’s plan.
  Initially, I was a little like Rhonda-Rene in that, I had a preference for whom I wanted comfort from. I thought the people closest to us would be our soothing balm but it’s been the unlikely sources.
  Once Don and I had the opportunity to collect ourselves. We too began to hear music playing from distant places. Each time our intrigue led us into one door, a melody of voices directed us toward the loving embrace of various community programs, our school district, respite service, team of therapists’ and an awesome social worker.

  There have been numerous people placed along our path helping us navigate the journey of having a child with special needs. Now that we have their support, I can’t imagine what we’d do without them.
  Challenges in life will always be present. Regardless of the hardship, we aren’t the first, nor will we be the last to experience it. We should all keep an open mind to the unlikely sources. There are people all around us, waiting for the opportunity to help. If we’re consumed by the volume of our own distress, we won’t hear them.
  We must allow ourselves time to feel what’s real. Then, we must gain control and listen for the music that’s playing for us. We’re never alone, I believe we’re all connected.

Claudia Parker is an Evergreen Park mother, author, runner whose columns appear the second and fourth Thursdays for the Reporter.