Search Results Not Found

For years I found myself searching for answers to the questions of Charlie's developmental disabilities. I wanted to know the cause and find THE solution. As if disabilities are that easily "fixed" or "repaired" having a simple solution. I took Charlie to therapies and specialists. He had EEGs, EKGs, MRIs with and without contrast, video swallow studies, sleep studies and medical diagnostic evaluations. All of these yielded the same response. "search results not found". It was like typing keywords and truncated subject matter phrases into the search engine at the local library or Google only to have nothing returned.

In my mind at the time, I thought more extensive testing would find the hidden answers we sought. So we went down the path of genetic testing. First was Angelman syndrome because Charlie was always so happy and smiling. Then there was Fragile X because of his thin frame and stature. There was the microarray and Prader Willi after Charlie was diagnosed with his pediatric feeding disorder. 

It was the congenital myopathies panel that first identified his variant of uncertain significance. The variation found on the SYNE1 gene is significant because it is the gene that is responsible for making proteins that are found in many tissues. Specifically, it is the gene that is responsible for making the stuff your brain needs to coordinate body movements. (Taken 6/10/21: https://medlineplus.gov/genetics/gene/syne1/#conditions)

This led to the final exam, whole exome sequencing and mitochondrial genome sequence and deletion/duplication analysis. Ultimately, around every corner and every test we received the same uncertain answers like, "it's probably not degenerative, probably not debilitating. Or, we don't really know what to tell you or how to answer your questions. Check back with us every 1-2 years to follow up and just keep doing what you are doing, you're a great advocate and mom as Charlie is making great progress." 

I pressed on, searching for answers feeling desperate and alone. Without a definitive diagnosis we were lost, a G-rated 50 Shades of Grey with no community or support. We wandered that way for the next three years. The Aftershocks from the wrecking ball of my failed professional life left me depressed. I isolated myself because I had convinced myself that no one understood what I was feeling, what I was mourning as a mother. I was scared to put myself out there only to get the same, "results not found" answer.

Things evolved. We moved from Buffalo Grove to Grimes in order to be closer to my parents and aging grandfather. It became apparent that we would need support. Dad would need help with mom. I would need help with Charlie and Sophia. We needed to rally the troops. More time passed. Months turned into years while I continued an active search.

It late one snowy night in February 2020 that it happened, I had found someone that understood and I was no longer alone. As I stood holding Charlie, Jen rubbed my back. I shook as I shared our challenges with finding a safe, private, dignified changing spaces for Charlie. I asked our local parks and recreation board to purchase a height adjustable adult size changing table for their family restroom at the Community Complex. As I spoke Jen nodded her head in silent understanding. As the sibling of a child with complex medical issues, she too had felt the isolation that consumes families. Within a matter of moments the board unanimously approved the request. They worked creatively to identify the funding source within the proper guidelines.     

By March 2020 I began meeting people like Amanda, Erin, Megan, Rita, Emily and Brenda, all of whom had children with specialized healthcare needs. I learned of the Changing Spaces campaign throughout the United States. My search results were changing, I was changing. No longer did I feel so isolated and alone. There were others that knew that the challenges we were facing. We weren't the only ones weighing impossible choices in order to make difficult decisions. I had found my tribe. 

Then in an instant the search screen went blank. As the world closed down to shelter in place during the Covid pandemic I felt an internal struggle well up inside. I oscillated between depression and elation dancing the pandemic paradox two step. There were moments of pure bliss as I finally felt I had recovered millions of lost moments, just us as a nuclear family. Those moments were obliterated by the shear panic of feeling buried alive underneath a mountain of new responsibilities like managing virtual learning and collecting data for alternative assessments of learning. 

It was in September 2020 my search results began to return results. It began with an email for a woman named Julie Beckett. Julie is the mother of Katie Beckett. From Cedar Rapids, Iowa, Katie was the first Home and Community Based Service waiver recipient in the nation. Having received my name from a local community member, Julie had invited me to join a small group from The Arc of Iowa. Through Julie I met Delaine, Mike, Doug, Paula, Joy and Shannon. In our small group, our circles of connection strengthened us albeit virtually. 

By 2021 I had begun to find strength in my leadership legs. I found myself sowing seeds of hope opposed to those of despair. I gained strength from the companionship offered by these kind folks. It was as I sat with Delaine having coffee I was moved by a sense of connection. As we visited I rattled on about Charlie's blended diet, the cooking I do to manage his motility and pediatric feeding disorder. When Delaine began to speak, I could see a memory unfold across her face. She spoke of a countertop littered with small plastic containers as she steamed, diced and mashed food for her children to eat. It was in that moment I knew I had found my home. I knew I was among others that had walked the path I was now walking. No longer did I search aimlessly without results found. This some assembly required family had a tribe, a group with whom we felt accepted and included. Finally, we had found a sense of belonging. We had a community and had gain support from The Arc of Iowa.