The Monk Story-Jonathan J.

Fall 2013, after years of infertility and miscarriage, Todd and I were absolutely delighted to find out we were expecting a baby. The pregnancy was somewhat complicated for me, but every ultrasound revealed a perfect, healthy baby and as the weeks ticked by, our anxiety slowly began to transform into joyful anticipation. We did not elect to have any prenatal testing, relying instead upon monthly ultrasounds to assure us all was well.

Our perfect son was born May 29, 2014, exactly three weeks ahead of his due date. We were utterly undone, beholding our miracle in the flesh, our sweet baby boy, Jonathan Jeffery, whose name God has given Peace. At birth, nothing remarkable was noted. His apgar scores didn’t raise eyebrows, he nursed beautifully right away, no medical concerns. Just a beautiful, healthy boy. We rejoiced and excitedly introduced him to family and friends, ready to step into our parenting roles, with enthusiasm and soul-deep gratitude.

Once Todd returned to work, life took on a soft hum of routine between Jonathan and Momma. Choosing to be a stay at home mom gave me lots of time to observe and marvel over this tiny person who came to be because of love. Watching as closely as I did, I began noticing things that seemed different than other babies. Jonathan wasn’t moving through milestones at the break neck pace of others we knew. I told myself he was teaching me to appreciate life at a slower pace. As he approached a year and was not crawling, our pediatrician recommended an Early Intervention evaluation. Which revealed delays in all areas. We began physical therapy at 11 months. Speech therapy was added at 21 months with Occupational Therapy and Special Instruction following soon after.

Just as Jonathan turned two, we moved to a new home and subsequently transferred to a different primary doctor. At our first appointment, we discussed the piling up of delays and our doctor asked if anyone had mentioned potential syndromes. I was thunderstruck. Immediately, my mind wandered back to our first speech therapy session where the speech pathologist mistakenly assumed Jonathan had Down syndrome. At the time, my husband and I figured she’d read the wrong paperwork before our appointment, but secretly, in a place I would never admit out loud, there were times when I gazed at my baby and thought he looked a little different. Sometimes the shape of his eyes seemed unusual, other times it was the protruding of his tongue….except if he had Down syndrome, surely it would have been noted after birth….certainly well before two years old, right? Yet, in that doctor’s office that day, everything sharpened into clarity that stopped the world turning for a moment. Could it be that he had Down syndrome and no one had noticed for two years? Could that even happen?

On June 20, 2016 we found out the answer. Our perfect little boy had a mosaic form of Trisomy 21/Down syndrome. A mosaicism can occur with any chromosomal condition. In the case of Mosaic Trisomy 21, some of the body’s cells have a third copy of the 21st chromosome and some of the cells have the typical make up of the two. Just like that, delays turned into disabilities. With the flip of a switch, the world went dark, the future became entirely uncertain, our perfect little world shattered to pieces, our hopes dashed to dust. What would become of our life now? Would our son be judged and found wanting? How would we help him reach his potential? What WAS his potential?

It was a stormy year as we waded through information and dragged ourselves to endless therapies where Jonathan did not generally cooperate. In July 2017, we added the diagnosis of autism and, in between, discovered speech apraxia was also part of our world. Always in the back of our minds, loomed a darkness, a fear we could not name. We did not tell our families about the diagnoses. Though we were introduced to two beautiful children with Down syndrome and were warmly welcomed to a brand new family, we stayed in hiding for several months more, grappling to make sense of our world.

Until slowly, the dawn began to break. Through the wisdom and patience of a doctor whose brilliance uncovered a mystery. Through the kindness of a nurse who championed for us while we awaited our test results and won Jonathan’s heart for life. Through the courtesy and unwavering support of receptionists, nurses, and our new primary doctor at our faithful office. Through Early Intervention where we met a saint named Sarah who helped us navigate evaluations and therapies. Through therapists who met me in the darkness of my ignorance and confused disappointment, bathing my soul in unconditional acceptance and teaching me how to be a mom. Through The Revealing where we found our families waiting with open arms and nothing but radical, joy-filled love for our son. Through preschool where pieces started falling beautifully into place and I looked at my still-perfect little boy through new eyes. Where new therapists became treasured friends and have rejoiced in his every gain. Where teachers and aides have loved him as their own, carrying our family high on their shoulders as Jonathan marches confidently into a world where he is defying expectations and changing lives everyday with his discerning perspective and abiding affection.

The friends we have made, the love we have found, the light that surrounds us and fills us every moment – this is the truth of Down syndrome. In the sparkling eyes of a child, in the depths of a heart that can reach beyond the external to the place where Love lives. That is the magic, the mystery, the miracle of my son.