Seeking Joy and Peace

In this classical painting, a mother kneels with her child. They are both praying, seeking joy and peace from God.

Four years ago our family of three—my husband, myself, and our daughter—was joined by twin boys. This was perhaps the most special moment in all of our lives. Twins: two souls sharing from the first of their existence. A miracle.

But our joy soon turned into worry, followed by grief. At just four weeks of age, one of the twins, Jordan, was hospitalized for seizures. I remember the doctor summoning me out of the hospital room where tiny Jordan still lay connected by many wires to an EEG monitor. Holding Theo, I heard Jordan’s diagnosis: a rare genetic condition that caused benign tumors on his brain. The doctor instructed us to bring Theo for neurological tests too. His identical diagnosis followed quickly. Because I nursed my twin infants, I brought Theo to that (and every other) hospitalization baby Jordan needed. The boys, once again, shared.

Jordan’s seizures progressed quickly despite intensive treatments. He started to miss developmental milestones. He was sleeping far too much, seizing many times a day or not moving at all, and getting sick. Immobile well into toddlerhood, by the time Jordan was a year and a half he was losing weight. Many medications and many dosage changes led only to endless side effects, crying, sleepless nights, and fear beyond anything I had ever known.

Meanwhile, Theo experienced his first seizure at nine months and did not walk until he was almost two. By age two, neither of the boys had any speech. One day a friend’s toddler looked up and said, “Look, it’s an airplane!” I remember thinking, It’s a sentence! I looked at my two sons. Theo could point to objects at best, but Jordan couldn’t even move. The boys were tiny but diagnoses kept piling up. Hypotonia. Global developmental delay. Language and speech disorders. Mental health diagnoses. I felt as if an abyss lay between my children and the rest of the world. How could I ever carry them over to the other side?

The Covid-19 pandemic brought yet another challenge: accessing medical care, intervention, church, and companionship. Everyone felt the isolation during that time, but as the world moved on our family continued largely in seclusion to manage both boys’ care day by day. At times it has felt like a losing battle. I began to understand that unless I learned ways to find my own joy and peace I would never be able to teach joy and peace to my children.

The Word

Many years ago in my catechesis study, I heard a speaker say: Seek the Word every day. It wasn’t until I was deep in the trenches of special-needs parenting that I began to understand my need for God’s Word. I like to get up before my children are awake in the morning to read the Gospel passage of the day and listen to a sermon. I keep my study time concise, and when the morning doesn’t go as planned, I listen to the reading on the way to my daughter’s school or my sons’ therapy. I fall short all the time, but the Word is always there for me; and it’s alive—living and active. The Word brings joy and peace and answers my questions. I pray the Lord to help me. He sustains this daily practice and nourishes me.

Pursuing What I Love: Art and Books

When my oldest was a baby I started a collection of beautifully illustrated children’s books. I became interested in art and tried to learn about what makes great art great. I had always wanted to learn to paint, but it was not until adulthood, spurred by my desire to capture moments of my children’s childhood, that I finally placed brush to paper. On our walks now I take pictures of ideas for paintings. I practice sketching while my sons are in therapy. Some days I sit down and work on a painting just to make it through a hard hour, letting my children play nearby. Unexpectedly, over time I have found that Theo has grown very fond of drawing and painting. Now Theo and I connect through art in ways both of us enjoy.

While I cannot escape into a longer novel as often as I would like, the rich world of children’s literature has brought me joy, peace, and relief. This is a world my children and I can love and share together. I think of the saintly Eliza from Andersen’s Wild Swans, the mischievous yet brave Emil of Lonneberga from Astrid Lindgren, and the softening of the father’s heart in Paul Gallico’s Thomasina. These characters, stories, and illustrations enrich my life just as they enrich my children’s lives.

Gratitude

When my twins neared their second birthday, my husband gifted me a gratitude journal, the kind that prompts writing three things to be grateful for on a given day. It’s hard to practice gratitude on days when my children struggle, yet I have learned to take things one day at a time. I find that moments of joy and peace reveal themselves through this practice.

Prayer

I often feel lost as to how to give enough love and attention to all three of my children. It has been tempting to “ration” myself, but I keep discovering that the Lord works through every need that comes from within and from outside of our family. One prayer in particular, a mother’s prayer authored by the Venerable Ambrose of Optina monastery in Russia, has been a guide for me. Among the supplications are these words:

Give me your graceful help in their upbringing to glorify Thy name and in service to their fellow man. Give me ways, patience, and strength to fulfill this purpose.

There is comfort in remembering that though I as a mother naturally want the blessings of this life for my children, it is our heavenly Father and His will that governs our life. The Lord’s ways are incomprehensible. The above prayer proceeds:

As a parent I wish earthly blessings on my children, the gifts of heaven’s dew and of earth’s richness, but let Thy will be done.

Routine: A Day at a Time

Many people prayed for our sons. We took them to their medical appointments. We tried different therapies in several clinics until we found the place and schedule that worked for both of them. I read nursery rhymes while nursing them. I sang them lullabies before bed. With all of this, we have kept a consistent routine with plenty of sleep, time outside, and the right diet.

Now four, Jordan waves to Grandpa and says, “Bah-bah.” He can walk from the kitchen to the playroom, crawls quickly, and has a wheelchair for outings. Jordan communicates with a speech device or a sign, as when reminding me it is dinner time. At his best, he loves to laugh and play games. Jordan is a beautiful boy with large, dark gray eyes made even more impressive by thick-lensed glasses.

Theo works on his speech one sound at a time with his speech therapists. A sweet boy, he calls for our attention if Jordan tries to leave the driveway or needs assistance. Theo now speaks in sentences, is imaginative, and is reciting by heart a poem from A Child’s Garden of Verses as part of Simply Classical Level B. “What’s a uniform?” he asks inquisitively. He is learning.

Joy and Peace

The other day as I was sitting in the family room with my twin sons, the clock was approaching half past four. The long day was almost behind us, but the evening routine loomed ahead of me: cooking a dinner that would include two medical diet meals carefully weighted on a scale to the gram, feeding and bathing my son with limited mobility, changing him, giving him medications through the feeding tube, tucking both boys in bed, and helping my daughter with homework.

“Mom,” I heard Theo beckon, “can you play store?” Tired as I was, I looked at the pretend store he had created and smiled. Objects for purchase stretched before me. “Sure. May I buy a car, please?” At that moment Jordan began crawling into the laundry room. I redirected and turned him around: “Jordan, we can’t play in here. Let’s go back to the family room.” Wanting the vacuum, his current favorite device, Jordan started banging his head on the door. I protected his forehead and tried to distract him. I heard Theo repeat his request to play. Comforting Jordan while trying to buy something in the pretend store, I glanced outside half-distractedly. The weather was changing to a heavier, much cooler late fall. Unable to play outside, perhaps my sons felt the menacing weight of a cloudy and cold autumn day. I felt it too.

“Mom … Mom!” “Yes, Theo?” Jordan seemed to have settled momentarily into a satisfying occupation. Then Theo asked me, “Can you say a payer?” I remembered we were playing store and repeated, “A pay-er?” He said the word again. I asked again, still weary and confused. Then it dawned on me. “Oh, a prayer?” “Yes!” His eyes met mine. This was an unexpected turn for the daunting afternoon; yet it made perfect sense. Theo began reciting words, as if from memory, but I had a hard time understanding them. After several back-and-forths, I realized that my son was saying the ancient prayer, Lord Jesus Christ, have mercy on us. I prayed the words. His gentle smile shone up to my face. “Keep paying, Mom,” he encouraged me. I prayed the prayer three times. His little soul seemed to know exactly how this prayer is used. It is a plea and a submission said over and over by Christians throughout the world.

As I pronounced the words, I felt the warm sun that had battled through the heavy October clouds reach through the window and touch me gently on my cheek. I felt calm, rested, restored.

I care for my children. My heavenly Father cares for me. In all of this, in His divine mercy we find joy and peace.

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