“Social Distancing”, “Self-isolation”: not terms I would have coined myself, but I’m very acquainted with the concepts. During our son’s early, fragile years as well as during cold and flu season through more recent, healthier years, we have tried to walk a tightrope balancing act of isolating our family unit from “high-risk” social settings while maintaining some semblance of mental health. The stress of taking him to large family gatherings for holidays or birthday parties at venues where ball pits and trampolines are shared by runny-nosed, coughing and sneezing little people, was just too much. With every ball he licked or surface he “swam” upon, my anxiety level would ratchet up several notches. Sensory processing issues added to the murky stew of malaise we experienced during social gatherings. Alas, we either arranged for him to stay home with a sitter, for one of us to attend and “represent” our family, or simply for us all to stay home together.
I’m not sure that family members and friends have always understood our predicament. I pray they’ve felt no offense at our dwindling appearances for special celebrations. We just cannot risk him getting sick even more than he already does without extra exposures. Because of underlying chronic health issues, Michael’s “sick” is not like most other’s “sick”. Symptoms are felt very keenly, while the autistic brain’s dis-regulation of emotions exacerbate every sniffle, cough, headache, etc. His ear and nose canals are smaller and slightly offset compared to most humans, so sinuses don’t drain well and pressure builds. Breathing - especially at night - is constantly labored, and we rarely sleep. This is just for common colds! I do not wish to belabor the difficulties we face, but to explain the reality of additional burdens some people experience in fighting illnesses, recovering, and simply dealing with symptoms – physiologically and emotionally.
The extra protective measures led to conditions of extra isolation, especially when my husband was assigned to parishes far from the help and solidarity of family. A lonely number of years it was indeed. Through all of it though we learned not only to cope, but also to try to see the “silver lining” in our cloudy atmosphere.
An “attitude of gratitude’ became something we prayed for God to nurture and grow in our hearts. He did. The little things we once took for granted became more obviously big things to be grateful for. Our son was alive! He could breathe, eat, walk, laugh, and enjoy simple pleasures. We always had access to medical care and a deep well of nutritional information and resources to help us strengthen his body. The teachers, behavior specialists and therapists who came into our lives became extended family who loved our child and cared for him in ways we were not equipped to, for lack of training and energy.
We began to thank God for every connection we made with Michael: every smile, every sign that he was with us even when his behavior suggested otherwise. We learned, we grew, we made lots of mistakes and still do; but we have come to see beauty in this unusual life God has offered us. We grieve losses and move onward, looking forward to the blessings that may be born from them. We experience little deaths of personal hopes and dreams all the time, but the new life that rises up to the surface is stripped of vanity and offers us an opportunity to suffer with another – to develop compassion.
I want to reflect on a particular little death and resurrection which is unveiling itself in the midst of our more stringent self-isolating these days. My non-verbal teenager is showing me something of his relationship with the Lord.
In the midst of some of the most challenging times of his life, I would still bring Michael to church. Knowing the power of Christ in the Eucharist, I wanted him to receive Holy Communion frequently, to know God and feel His comfort, love, and healing through reception of His Holy Gifts. Of course there are times of sickness when we stay home, but I rarely let a bad mood or the sniffles keep us away – sometimes much to my later regret. The bottom line: Michael is a churchgoer. He seems to like it, especially the music and singing. Sermons aren’t his favorite. He’s quick to let his father and the whole congregation know if he thinks they are too long.
I sometimes catch him gazing at the Iconastasis and wonder what he is beholding. Without having words to tell us though, we just don’t know what he feels, sees, or hears from the Lord.
Enter in the recent guidelines of social distancing in places of worship…
It started a few weeks ago. He would request “church” on his speech device. “Church,” “church,” “church,” “church...” spoke his iPad persistently. Trying to explain, “not now” or “hopefully soon” was clearly not a sufficient answer for him.
Next he tried his luck with his grandfather: “Papou Church,” “Papou Church,” “Papou Church…” he would say several times a day.
When this didn’t get the desired result, Michael supplicated his grandmother.
“Yiayia Church,” “Yiayia Church,” over. And over. And over.
He has not stopped.
It’s like he’s saying “For goodness sake SOMEONE take me to church already!!!”
Then recently, he went into our bedroom for a change of scenery from the Living Room. Hearing some rustling noises, I went in to see what he was doing. He had taken an icon of the Theotokos with the Christ Child down from my icon shelf and was dangling my late grandmother’s rosary beads over the icon. It was a sweet scene to behold. I left and returned later to visit with him. I sat next to him and he firmly grabbed my index finger. He does this when he wants to make sure I know exactly what he wants. He led my finger purposefully to touch the image of Baby Jesus in the icon. My heart melted. “Yes Michael, you miss Baby Jesus don’t you? We love Jesus, don’t we? He loves you very much, doesn’t He?” I said, my heart swelling with emotion.
Once more, a silver lining is presenting itself in our unique walk through this collectively dreary, worldwide pandemic experience: My child knows His Lord, misses Him in the sacramental life of the Church, and longs to visit Him there again. In a way, I suppose, I have COVID-19 to thank for knowing it.
What are the shiny blessings revealing themselves in your lives? They are there for us all, if only we “have eyes to see” (Matt 13:15).
Presvytera Melanie DiStefano is the Resource Coordinator for the GOA Center for Family Care.