BY KARA AYIK

When my son Evren was in the sixth grade, he joined the Boy Scouts. While I was happy to see him socializing and learning about the great outdoors and his obsession du jour—wilderness survival—I was always nervous when he was away from me. Evren’s rare genetic disease, Acid Sphingomyelinase Deficiency, or ASMD, affects many organ systems including the liver, lungs, heart, and bones. Headaches, stomach pain, bleeding and fatigue were common to the point of being more ordinary than unusual.  In short, Evren’s health status was a source of chronic anxiety. 

My parents, Evren’s grandparents, shared my fears for his well-being. So for longer scout trips or overnighters, my father faithfully accompanied him dressed in a standard issue, adult-sized scout uniform. 

Evren was always relieved Grandpa was there.  Grandpa’s presence freed Evren from his anxieties about his health and allowed him to just be one of the boys.

The arrival of summer meant the much anticipated, week-long scout camp. I don’t believe I would have been brave enough to send Evren alone, accompanied only by the Scoutmaster and one or two other adults. But since Grandpa would accompany him, I smiled and sent Evren off, optimistic he would experience the typical childhood joys of summer camp. I could also relax somewhat, safe in the knowledge that Grandpa would watch over him. 

Two days after Evren left for camp, I received a phone call. “I’m driving Evren to the hospital,” Grandpa informed me in his high-alert yet everything’s-under-control tone. Apparently, Evren had a bloody nose—a common occurrence in childhood– but with ASMD, bleeding is a major concern since the disease interferes with clotting. His nose had begun gushing blood, alarming the camp’s first aid officer, a former army medic. He tracked down an ER doctor in the camp who said there was nothing he could do.  Evren needed to be transported to the nearest hospital, about forty-five minutes’ hard drive down a steep mountain, mostly on dirt roads.

After my father’s call, I stopped everything and jumped in the car to make the hour and ten-minute drive to meet them. Every ten seconds I had to tell myself to ease my foot off the gas pedal. A speeding ticket’s not going to help at all. Thank goodness my father is there, I kept thinking like a broken record. 

When I finally arrived, I found a pale-faced Evren lying patiently on an ER room table with hospital grade clips on his nose, dried blood on his face, and a soaked tee-shirt that looked rather grisly from his recent bleeding event. I comforted him while I cleaned off his face, and then I went to speak with my dad in the waiting room.

“Dad,” I said, “I have a mission for you.” I knew without hesitation I could ask my father to do anything for his grandson, however inconvenient. “I need you to go buy Evren a new tee-shirt.” Without any ado, my father left the ER and headed to the nearest drugstore.

Now I came from a military family in which the children did not order the parents about. But the presence of a grandchild, especially one with special medical or developmental needs, somehow bridges the divide between adult children and their parents, even between those who haven’t always seen eye to eye.

Grandpa returned and handed me a neon-orange tee-shirt in size adult-small emblazoned with the city’s name in bright blue letters. “It was the best I could do,” he said apologetically. With gratitude, I took it and quickly peeled off the wet, stained tee-shirt Evren was wearing and threw it in the garbage. Although the giant top swamped Evren’s little torso and nearly reached his mid-thighs, he was clean, dry, and restored. After a long rest, he recovered and begged to return to camp. “Why not?” said the doctor. And so he did, along with Grandpa, of course. 

Grandparents who actively care for grandchildren who have serious illnesses or neuro-developmental diagnoses are truly unsung heroes. But in fact, when looking at the grandchild-grandparent relationship from another angle, it is the grandparents whose lives are honored, made beautiful and thus “graced” by the presence of our very special children. For this reason, I choose the term “graced grandparents” to distinguish the exceptional classification of grandparents who have these special grandchildren in their lives.

Indeed, these grandparents are honored to be able to journey alongside a grandchild whose life may be fraught with remarkable challenges or whose life may be limited in length.  Such children allow us to be immersed in unconditional, perfect love while they illuminate the ephemeral nature of life and underscore the very purpose of our existence. 

In contemplating graced grandparenthood as a universal phenomenon, I decided to ask Veronica, my symbolically adopted niece, about her perceptions of her mother Irene’s role as grandmother to Jace. Jace was Veronica’s eldest son who had cerebral palsy and who was non-verbal and non-ambulatory. He passed away at age five during the COVID epidemic. 

Veronica affirmed that her mother gave her “so much emotional support,” during and after her son’s life. She went on to explain that her mother Irene had grown hard with the enormity of the responsibility and hardships she had endured. Irene had already lost an adult son and a daughter and was raising her grandchildren as a subsistence farmer in rural Uganda. As Veronica put it, her mother “was not so emotional.”   

Despite their socio-economic differences, I had seen this disconnect on a smaller scale with my own father. Life had hardened both of them to an extent. But it seems that the presence of our extraordinary children allows grandparents, even in extreme cases, to rediscover and reconnect with their gentleness and true identity as caring, feeling adults who are capable of outwardly expressing love and affection.  Because of the special grandparent-grandchild relationship, miraculously, they are able to become “soft” once again. 

Graced grandparents are the unsung heroes who hold up their children and grandchildren selflessly and steadfastly with countless acts of support.  Often, these grandparents are the only ones who provide desperately needed respite care, especially for our older children. Their patience and wisdom, gleaned from their maturity, and close family bonds create the trustworthiness anxious parents need in order to separate from their children, many of whom are unable to speak for themselves and who require knowledge of specific behavioral or medical interventions. These heroic grandparents primarily offer their time and energy for free, without public recognition, and frequently on the fly. 

Moreover, they are commonly the chief supporters of our other children, the super siblings, which reinforces our family systems and fosters our collective resilience. Even after the loss of a grandchild, these grandparents, with their wisdom and love, continue strengthening their adult children and surviving grandchildren. 

This was the case for Veronica, who described the support her mother gave to two-year-old Izzy, Jace’s little brother. Confused by Jace’s disappearance, Izzy talked inconsolably about his missing brother, repeatedly asking when he would return. Grandma Irene was the one who “helped Izzy understand that when someone dies, they never come back,” which allowed Izzy to eventually resolve his grieving process.   

Veronica also revealed that even in her bereavement, Irene was a graced grandparent. “You see,” Veronica explained, “here [in Uganda], we call an older person not by name, but by their first child’s name. They called me Mummy Jace. After Jace died, it took a long time for my mom to upgrade to Mummy Izzy.” Irene cherished her grandson, and the honor she held for Jace made adapting to the family structure’s new hierarchy a heart-rendering process.

Five years after that first summer camp, Evren achieved the highest rank in Scouts, thanks in large part to his grandpa’s unwavering devotion and dedication. A year after that, Evren and I co-wrote a children’s book about growing up with a rare disease, and Grandpa is represented in an illustration that depicts a grandfather following close behind his grandson as the two cross a stream amidst a group of scouts. Those readers familiar with chronic disease may recognize the insulated medicine tote bag that the grandfather shoulders for his grandson. It is symbolic of the weight they help us carry. 

So today, graced grandparents all over the world, on behalf of all parents and guardians of children with serious medical or neuro-developmental diagnosis, I salute you, and I thank you. Yes, you have been graced by our children’s presence, and yes, we are infinitely blessed to have you.

Kara Ayik is mother to two young adult sons, Evren and Erol. Her oldest son Evren was diagnosed with ASMD, a rare genetic disease, at age three. In 2021, she and Evren published their co-written book, Extraordinary! A Book for Children with Rare Diseases, which has since been translated into multiple languages. Currently a teacher, Kara divides her time among her many interests which include environmental stewardship and support for the well-being of children everywhere.