Henry’s soft babbling from the backseat filled our quiet car. Silent tears slid down my face as the frozen February landscape sped by. We were on the way home from appointments with his audiologist and new ENT where they confirmed he needed another surgery.
I gripped the steering wheel as my mind raced with thoughts and questions and concerns most parents never have. It will be his third surgery, sixth sedated procedure, and 20th or 30th or so hospitalization before he turns 3. And because of his complex medical history and unique genetic makeup, even routine surgeries carry extra risks and longer recovery periods for him.
Each time he’s intubated his heart rate drops dangerously low.
And everything is just more complicated in a pandemic that never ends.
As I sped down the freeway, I could feel the familiar grief and loneliness creeping in.
*
I closed my eyes and rubbed my temples as I lay on my bed in the afternoon winter sun. I was seizing a few minutes for myself after a long and emotional week; in the days following Henry’s audiologist and ENT visits, both boys had appointments with their neurologist. Emails were sent and calls were made to more doctors and specialists to schedule more follow-ups and labs and tests for both of them. We topped it off with an echocardiogram for Henry and a visit with his new cardiologist.
The reality of life with two sons with special needs—Elyas with autism and Henry with Down syndrome—is that I find myself coordinating care plans, doctors, surgeries, and therapies the way other moms coordinate play dates, sports, and activities.
The pattering of little feet announced that my stolen moments of quiet were over. Elyas launched himself onto the bed, and I rolled to my side to pull Henry up. The boys looked at each other with mischievous smiles…then full-body tackled me. And for a few beautiful heartbeats we lay there, laughing with limbs all entangled.
Then Henry hurled himself at Elyas, and they went sprawling across the sheets, giggling and wrestling. I tucked myself into a corner of the bed, marveling at how well Elyas handled Henry, holding back his full four-year-old force and letting Henry take the lead. I marveled at how strong Henry had gotten, at how confidently and quickly he moved on such unstable surfaces. At how well he could communicate despite not using any words—and at how well Elyas could understand and read him.
As they caught their breath for a moment, panting and smiling at each other in the sunshine, Elyas wrapped his arms around Henry. “I love you, Hank,” he said and gently kissed Henry on his forehead. Henry looked up, grinned, and gave Elyas a loud kiss on the cheek.
And then they were rolling and wrestling and laughing again.
But my heart was memorizing that moment, so full of unassuming triumph. Bursting with brotherly love and pure joy. Made all the more beautiful by the ache of sorrow and heartache we’ve endured on the hard-fought road to get here.
*
In the New Testament, the Greek word for joy is directly related to the Greek word for grace. As you dig in, you realize that joy is, at its core, the awareness of God’s grace—the awareness of His favor and blessing.
And when you learn to recognize and lean in—when you can see and savor—the many ways His favor and blessing touch your life, you will find unwavering delight welling up deep in your soul.
Because Joy comes when we can taste and see that the Lord is good—no matter what is happening around us or to us. True Joy, the Joy Jesus himself promised us, is a deep-seated gladness and assured confidence in the One who came to give us Life to the full.
*
When Henry and I arrived home from the audiologist and ENT appointments, we eased back in to the flow of life. We read some books and sang some songs and cuddled when I put him down for his nap.
As I prayed over him in the quiet darkness of his bedroom, I could feel that I had entered a sacred space. I was holding the weight of Joy in my arms even as I was holding the weight of grief and sorrow in my soul.
And this. This is my life. More amazing and beautiful and full of Joy than I could ever have imagined.
And yet it’s harder and more heavy and holds more grief than I ever imagined.
Both are true.
It’s not either/or. It’s both/and.
It’s the boys playing with their toys together—huge milestones for them both. It’s magical walks through a Narnian-like winter forest. It’s dance parties and music mornings and walkie-talkie hide-and-seek and jumping between couch cushions because the floor is lava. It’s baking cookies and banana bread muffins and early morning cuddles as we read piles of books in bed together.
And it’s ambulance rides and lonely nights in hospitals and frightening diagnoses. It’s surgeries and procedures and seeing your son turn blue. It’s hours and hours of screaming because little bodies and brains are shutting down with sensory overloads. It’s seeing your son’s peers hit milestone after milestone while you wonder if you’ll ever hear him say “mama” or have a life without diapers.
It’s holding all your anxiety and grief during yet another trip to the ER, but also feeling such a deep sense of gratitude that the doctors and nurses know your son by name and remember him and all his visits.
It’s all three of you reaching the complete and utter end of yourselves at the same time. And as you gather their sobbing little bodies into your arms, you hold them tight and cry along with them. And you feel the sadness and exhaustion with every fiber of your body, yet you also feel, in the cracks and crevices of your broken heart, a Hope and a Peace that passes all understanding.
It’s Joy, and it’s sorrow.
*
The truth this world doesn’t want you to know is that if you chase happiness, you will always be left wanting. If you run from heartache, you will always skim across the surface of life.
But if you choose Joy, you will be filled no matter what life throws at you.
Because when you experience true Joy—that assured, confident delight deep in your soul—you will be able grieve with Hope. And when you taste the bitter pain of sorrow, you will fully know and experience the gift that true Joy is.
Somehow, in this upside-down Kingdom, Life to the full is found in the space occupied by both Joy and sorrow.
It’s found when we learn to follow the One who leads us into—and out of—both the dark valleys and the green pastures. When we learn to feast in the midst of adversity.
When we learn to let Him overflow our cup with something more delicious, more bittersweet, and more breathtaking than we can imagine.
***
I remember when my son was 2 and he was screaming and crying from sensory overload and a friend was at my house and said “I think you need to see someone. Something isn’t right.” My heart broke and fear leapt in that what I kept telling myself would change wasn’t changing. We hadn’t gotten an Autism diagnosis yet but I remember so clearly how after she left I went into his room and stared at him through his crib and repeated softly over and over “You are fearfully & wonderfully made my son. You are fearfully & wonderfully made.” He is 9 now and you have described the feelings that are felt and the joy so beautifully. Praise God!