She stood on the threshold wearing a red dress, her chopped hair topped with a big chiffon bow customary for little Russian girls. Holding the hand of the orphanage director, she looked across the room where I sat on a red couch in front of a wall of windows covered with sheer white drapes. The sun poured in, warming my back. The woman with straight gray hair pulled back in a bun and wearing a long white clinic coat, bent down and whispered in the little girl’s ear while pointing at me. A smile spread across that young face. Then I heard the one word I’d been hoping, praying and waiting years to hear.
She ran across the room, arms spread wide like a bird in flight. We embraced and I pulled her onto my lap. Looking me straight in my eyes, she uttered some Russian words I didn’t quite understand. Our translator helped.
“I’ve been waiting for you for so long!”
I smiled wide and responded, “I’ve been waiting for you for so long too!”
Her name was Alla back then. We gave her a new name full of meaning for all of us that day—Anna, from the Hebrew Hannah, which means “God has favored me”, or “grace”, or “favor.”
How ever you translate “Anna”, she is my daughter—our daughter—the first of three Russian children God graced us with when my husband and I found we couldn’t conceive. That day in September, 1997, we witnessed God’s way of binding up the brokenhearted. God has His ways of gracing with His perfect plans we can’t conceive.
As it is written:
“No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love him.” I Corinthians 2:9
As I marveled at Anna sitting on my lap—my new daughter—I was struck by how small and thin she was at nearly six years old. Gray circles underscored her brown eyes. Black stains made her teeth appear rotten. Still, she was my daughter, my beautiful Anna. We would give her the life she would never know inside an orphanage. My heart was full of hope not only for her but for myself, my husband, all of us.
Three months after returning to the States, I began noticing learning problems. Anna kept getting lost in our house, a two-story colonial, approximately 2,400 square feet. She couldn’t remember how to find our bedroom at night, straight down the hall from her own. I’d find her downstairs wandering, screaming and trying to find us. A year later, she was still struggling. I sought professional help.
Neuropsychological testing revealed significant short-term memory impairments, visual-spatial impairments and a cognitive processing speed in the 1st percentile, meaning that 99 percent of children her age could process information faster than Anna. The worst finding of all was her IQ score of 70 designating her as intellectually disabled. I stared in shock at the numbers—all the numbers. I knew what they meant, clinical psychologist that I was. Our beautiful Anna would not develop like her peers. Our beautiful gift of God’s grace would probably never grow to be an independent adult.
Over the next year and more testing, we discovered our other two children also had a myriad of disabilities, most likely stemming from fetal alcohol exposure. Suddenly, life as my husband and I had hoped became something far different.
Our days have been filled with therapies and specialists—eleven in all—over the course of twenty years. Medications and surgeries all dealt with problems no one could see. Family and friends found us difficult to comprehend. Our kids are attractive with no hint of visible disability. When one has Down’s syndrome, for example, most people can tell and adjust their expectations. They give grace. Not so with people who have invisible, significant challenges. Judged by appearance, people too seldom considering how the invisibly, chronically ill and disabled struggle within—how they try to fit in, but can’t. Like my daughter and two sons, I have become one of the invisible, chronically ill.
Though I had tried as best I could in those hard days of early parenting to lean on the Lord, I became worn thin by loss and by life. Three months after adopting our first two, I experienced my first full-blown bout of clinical depression.
One January morning, I slid to the floor in front of the dishwasher I had started even though empty. My heart hurt. I could feel it pounding in my chest. My brain hurt. I could feel it pounding against my skull. I don’t know whether I felt sad or just felt nothing at all. All I know is I couldn’t get up and get through another day. I had reached the end of my coping ability.
Todd came down from our bedroom and found me in front of the dishwasher, sitting on the floor, staring straight ahead. I didn’t even raise my head.
“What’s wrong?” he inquired as he came close.
“I’m depressed.” That’s all I said. I felt like saying more might deplete me further, if that were possible.
“Well, you’ll be ok,” he encouraged. “Things will get better.”
“No, they won’t. I’m seriously depressed. I need a doctor. Right now. I need medication.”
I was adamant. I was seriously sick. I could hardly move.
Sitting on the edge of the chair in my doctor’s office, I listed my symptoms:
- Significant sadness, tearfulness.
- Irritability and frustration over small things that usually didn’t bother me.
- Loss of pleasure/interest in things I once loved.
- Extreme fatigue and lack of energy. Even the smallest tasks required extra effort.
- Anxiety, agitation.
- Feelings of guilt, self-blame.
- Trouble thinking, concentrating, making decisions, remembering things.
- Frequent thoughts of death and suicidal thoughts (but no intent).
My doctor agreed. I was in the full throes of major depression, not just some normal reaction to loss. She prescribed an anti-depressant, my first. I went to therapy.
Within a few weeks, I felt better and was able to resume caring for Anna and the boys with my normal vigor—the therapies, the homeschooling, the private schooling, the constant meetings with multiple professionals for disabilities no one can see: cognitive, social, emotional, physical.
All through the years, Anna struggled. Friends came and went. Most left when they developed beyond her and could no longer relate to a girl whose body was growing but whose brain was not. They could not understand her lack of social understanding. They could not understand why she made seemingly ridiculous remarks or asked questions most people even much younger can answer. They resented her neediness—how she glommed onto people and couldn’t understand proper boundaries. They couldn’t understand that what seemed to be gross immaturity was really disability. After all, how could a physically beautiful girl who spoke with good vocabulary have any significant disability?
Todd and I have become accustomed to others saying, “She doesn’t look disabled.” We’ve become accustomed to most having no idea the extent of Anna’s challenges—how now, at 26, she needs an assisted living arrangement because she doesn’t know how to choose proper clothing for differing weather conditions, or how to choose and prepare proper food, or even how to shop for food—how she can’t manage money at all—how she can’t and won’t ever drive—how she doesn’t know how to care for the common cold, or make/remember important health appointments, or remember to take her medication. Ah, yes, her medication!
Three years ago, Anna lost touch with reality and found herself in a locked psychiatric unit for twelve days. A new diagnosis was added to her long list of chronic disabilities: Bipolar I Disorder with psychosis. A new professional became part of our lives as well as two new medications taken daily, probably for the rest of Anna’s life. The invisible, chronic disabilities now includes a chronic mental illness.
As I look upon my little girl, now a grown woman, I confess I’ve been angry and sad and bewildered too many times to count. I’m sure the grief from loss has contributed to my own inability to cope at times.
As a Christian, my guilt has been intense. Why couldn’t I just stay positive with prayer? Why couldn’t I just be grateful for all God has provided instead of grieving my kids’ challenges? Why couldn’t I just rejoice in Anna’s moments of happiness instead of aching every time she watches her friends experience something she knows she’ll probably never experience—dating, engagements, weddings, babies, independent living. Why can’t I just trust that God will take care of her, of them, once we’ve died instead of laying awake too often wondering which one of God’s chosen will understand her/their needs when so few have understood these past twenty years?
Living with chronic illness and disability isn’t easy. I have demons I battle every day. So does Anna. So do we all all. But we have joy that I believe has grown because we haven’t been given the lives we expected or hoped. We’ve fought hard for joy. We’ve learned to be grateful for the small things, for the small accomplishments, for the small developments. Most of all, we’ve learned how God defines success much differently than most. Small is big in the kingdom of God. Serving is receiving in the kingdom of God.
Whoever would be great among you must be your servant, and whoever would be first among you must be your slave, even as the Son of Man came not to be served but to serve, and to give his life as a ransom for many. Matthew 20:26-28
Could it be that the disabled and the chronically ill serve best by being “weak” in the eyes of the world?
Could it be that God has worked through Anna and our other children to show Todd and me and the many around us that we all have a desperate need for Him in our lives? That realizing our need and seeking Him more than anything can actually give us everything we want but never quite get on our own?
Could seeing our frail and feeble selves bring us the peace so elusive when we try and make our own way through this landmine landscape of life?
Could letting go of ourselves and our kids and leaning on God really bring us our deepest joy?
I can say now, after twenty years—absolutely yes! Even in the depression, there’s joy. Because loving Anna and our sons with all our chronic needs has taught me total reliance on the King of kings. I’ve learned, day-by-day, that when there seems to be no other way, God always creates a way, bringing me to my knees in humble thanks and awe. Every time we recognize our poverty, we become prosperous because we’re finally open-hearted, open-minded, open-handed and open-willed enough to receive the riches of God’s grace.
Relying fully on God isn’t easy because Pride doesn’t die an easy death. But allowing Pride to be crucified opens heart and soul doors to the freedom and fulfillment all seek but never find apart from God. His ways are often a mystery, but His ways are our perfect destiny.
We’ve been trained up by God’s hard but merciful hand in this knit-together-by-Him family of five. And I’ve come to know, in the deepest part of my soul this one essential:
. . . we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord. Romans 8:37-39
God’s grace for us in Christ Jesus has sustained us thus far. And I believe that His grace for us all in Christ Jesus will carry us all, all the way Home.
This month, for a donation of $25 or more, you will receive two of Anna’s whimsical notecard designs as a thank you for supporting the important work of Chronic Joy Ministry and for encouraging Anna and so many others in our community that there is purpose in a life with chronic physical and\or mental illness, that each of us is an integral, vital member of the Body of Christ. What better way to step into the renewal of spring than by writing a note to friend?
Donations can be made online or mailed to:
Chronic Joy Ministry
1015 Lemira Circle
Waukesha, WI 53188
HEATHER MACLAREN JOHNSON and her husband Todd are parents of three adult children who were adopted with multiple, invisible, permanent special needs due to early institutionalization in a Russian orphanage and fetal exposure to alcohol. They live on 44 beautiful, rural acres in Wisconsin.
Heather has struggled with clinical depression and anxiety since early adolescence. Still, she praises God for His mercy, grace and unending provision. She may walk with an emotional limp at times, but always, she runs with her Savior, seeking His wisdom and direction.
Heather’s greatest desire is to help other chronic emotional sufferers understand that no matter how wounded, we are passionately loved by God, invited to walk and work with Him to help others know of His love, salvation and constant provision, for He works best through those who know their brokenness and emptiness, through those who let Him in.
Heather studied Piano Performance at the Cincinnati Conservatory of Music and earned her B.S. in Education. She went on to earn her doctorate in clinical psychology and established a private practice in Chicago.
Heather loves not only the people in her life, but she is drawn to the songs of the birds and the bees, strong coffee, organic gardening, riding horses on her farm, and unhurried time to read and feed her soul.
Heather is the author of Grace, Truth & Time: Facilitating Small Groups That Thrive. In addition, she has published devotional pieces for The Seed Company, and will be published in an anthology edited by multi-award-winning author, Leslie Leyland Fields in August, 2018. She blogs at truelifewithgod.com
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Radical hope. Compassionate change. Equipping those affected by chronic physical and mental illness through community and education rooted in Jesus Christ.