Special Needs Parenting

Finding Faith And Friendship On The Special Needs Journey

  • Facebook
  • Pinterest
  • Twitter
  • YouTube
  • Home
  • Our Mission
  • Our Writers
  • Resources
  • Special Needs Parents Appreciation Month

The Call: A Grandmother’s Reflections on Getting a Diagnosis

April 7, 2015 by notaloneparents

Read below for a guest post from Joan Hartley.

The Call: A Grandmother's Reflections on Getting a Diagnosis (specialneedsparenting.net)

It was a simply beautiful, sunny day in May. My husband and I were enjoying a brief respite from the cares of the world in a picnic shelter overlooking our town’s river. Just a couple weeks prior, our daughter had called us while we were on a spring boating adventure with friends. “The doctor thinks he might have Williams syndrome,” she had said.

And now the phone rang again.

“Williams syndrome?” I had asked. “What is that? Why does he think that?”

Our grandson had been referred to a pediatric cardiologist for what appeared to be a heart murmur. It was this doctor who had shared his suspicion and recommended a genetic test to confirm whether or not he was correct. Although I had boldly dismissed the idea at the time, fear had immediately struck me between the diaphragm and gut like a sucker punch. Instead of leaving me breathless for a mere moment, however, it had taken up residence for the last two weeks. It felt like I had swallowed a lead weight.

What were the chances, I had thought during that first phone conversation? What were the chances that our grandchild – our dear, sweet, first grandchild – had a condition that affects only one in 10,000 people worldwide? Our daughter had patiently answered my whats and whys. A cute, upturned nose. Small for his age. An intricate starburst pattern on his baby blue eyes. I had reasonable answers for each item in the list. But, there was more. Poor muscle tone. Supravalvular aortic stenosis. Developmental delays. Looking back, I wonder who I was trying to comfort more with my rationalizations – my daughter or myself. She had told me we would know for sure in a couple weeks once the test results were complete. I wish I could say with certainty that I prayed with her then on the phone, but I honestly can’t remember. 

The rest of that boating trip took place in slow motion as did the next two weeks. Meals uneaten. Tears choked back. “It’ll be okay,” our friends had said. “Whatever the outcome, it’ll be okay.”

We shared the news at church and found encouragement in the kind words and prayers of fellow believers. Our pastor pointed us to God’s Word and His many covenant promises. He reminded us of God’s sovereignty and of His goodness toward us – even when we are called to suffer. One woman I knew assured me our grandson would be fine – that I just needed to pray and claim him to be healthy. And though I did pray – and so wanted to claim – I could not put God in a box like that. 

“What will I do if the test comes back positive?” I had asked our pastor, but what I really wondered was, “What will I think of God if it does?”

And then the phone rang.

Seeing our daughter’s number pop up, I mumbled to my husband, “This is it,” and breathed deeply as I put my free hand over one ear in order to hear better the words that would come next.

“He has it,” she said. 

If you’ve ever been on the receiving end of such news, you can probably remember that moment when time stood still. Maybe like me, you wanted to deny the permanence of such a pronouncement. Tests can be wrong, right? Happens all the time. I ventured briefly in that direction, but could tell by our daughter’s voice that I needed to stop. We talked, and I’m pretty sure we prayed that time.

But what of my prayers for the past two weeks? Had God made a mistake? Was He just not listening or vaguely disinterested? Were my prayers for our grandson’s health returned empty? Worse yet, had I only been having a conversation with myself?

I cannot fully comprehend, let alone concisely explain, God’s sovereignty in a broken world. I do not understand all the finer points of prayer. But, this I know: God’s Word tells me He is sovereign, and Jesus told his followers to pray. 

There are worse things in the world than a scary diagnosis. Haughty attitudes. Callous minds. Bitter hearts. Many people say prayer works. Others say it changes things. But, I disagree. God works and God changes things. He works in the lives of His people – comforting, equipping, establishing. Redeeming. He changes the minds of His beloved when we demand His gifts be delivered in pretty packages adorned with neatly tied ribbons. It is often said, when prayers are answered as we had hoped, that God is good – all the time. Occasionally, I have heard those who have endured a great loss say the same thing, and it is the overflow of these suffering saints’ faith that challenges and ultimately strengthens my own.

Phones ring, but things will be okay. 

And God is good – all the time. 

For more information on Williams syndrome, visit the Williams Syndrome Association‘s helpful, online site.


Joan HartleyJoan is a member of Grace Fellowship, OPC in Huron, Ohio – a wife, mother, and “Mimi” to three grandchildren and one on the way. She is founder of Winsome Arrows Educational Services which supports special needs learners and those who teach them in the home, school, and church. Joan and her therapy dogs, Justice, Mercy, and Mac, are volunteers with Canines for Christ.

Share this post with friends:

  • Share on Facebook (Opens in new window) Facebook
  • Share on X (Opens in new window) X
  • Share on Pinterest (Opens in new window) Pinterest
  • Email a link to a friend (Opens in new window) Email

Like this:

Like Loading…

Filed Under: Guest Posts, Living Life Daily, Medically Fragile Tagged With: getting a diagnosis, grandmother, heart, special needs diagnosis, trust

Join Us On Facebook!

Join Us On Facebook!

Top Posts & Pages

  • Why Did God Give Me a Child with a Special Need?
    Why Did God Give Me a Child with a Special Need?
  • Two things I wish I knew at the time of my child's diagnosis
    Two things I wish I knew at the time of my child's diagnosis
  • My Daughter's Disability Is Not a Tragedy
    My Daughter's Disability Is Not a Tragedy
  • What If She Lives With Us Forever?
    What If She Lives With Us Forever?
  • Autism Awareness Through the Eyes of Jesus
    Autism Awareness Through the Eyes of Jesus
  • God's Enabling Grace for Parents of Kids with Special Needs
    God's Enabling Grace for Parents of Kids with Special Needs

Recent Pins

Visit Not Alone's profile on Pinterest.

Copyright © 2026 Not Alone · Built on the Genesis Framework · Site by Design by Insight

Copyright © 2026 · Not Alone on Genesis Framework · WordPress · Log in

%d