My Journey to Joy
Easy is something I have never known. Motherhood has been no exception. But, looking back on all that has happened, I wouldn’t have it any other way.
My son Caiden was born not of my womb, but of the longing of my heart. My husband and I adopted our son eagerly, and somewhat naively, in October of 2015. We had struggled through infertility treatments for 7 years. Perhaps the struggle to conceive and the heartbreak of failure, opened my heart to a different kind of motherhood. You see, Caiden’s childbirth was traumatic: he was deprived of oxygen and suffered massive seizures resulting in life-altering brain damage. He really should not have survived his birth.
Caiden’s birth father left his biological mother to raise him alone. Just two weeks after returning from the hospital, she and the baby were evicted from their apartment. In this crisis, she made the painful, yet loving decision, to place Caiden for adoption. Enter the Herbers. Enthusiastic to have a family and counting on my years spent as a critical care nurse, we felt ready and equipped to parent a child with “some seizures” at birth. We read Caiden’s thick and grim chart of medical records, but we also saw the precious baby in the picture texted to us by our social worker. I could not deny him. Some people have applauded us for “bravely” choosing to raise a child with special needs. The truth is, at the time, we had no idea what we were getting ourselves into.
The day we brought Caiden home, he slept soundly the entire drive home. And then when we got into our apartment, he began screaming a high-pitched wail and would not, could not stop. His little 12-pound body was as rigid as a board and he could only stare out to his left with a severe look of mistrust in his eyes. We had a creeping, cold feeling that we might have bitten off more than we could chew.
A month passed with many sleepless nights filled with Caiden’s screeching. We went to see a pediatric neurologist. After carefully examining Caiden and reviewing his long chart, his prognosis was bleak. Caiden had hypoxic ischemic encephalopathy, global brain injury (much of his brain was irrevocably damaged) and most likely had spastic quadriplegic cerebral palsy. It was very unlikely that Caiden would ever walk, talk, or live independently and most likely would suffer from life-long seizures.
For me the world stopped moving and the air was sucked out of the room. Although I knew, as a nurse, that this was a possibility, as a mom, I hoped to hear that he would have a chance to live a somewhat “normal life”. Embarrassingly, I must admit, I had pictured parenting a special-needs child into victory—fantasized helping my son overcome the odds and having our story made into an inspirational made-for-TV movie, where all my suffering and hard work paid off and made sense. I had never imagined the likelihood of losing battle after battle. Our neurologist clarified that this should not have been the first time we heard about Caiden’s prognosis. He even asked if we were truly determined to finalize the adoption, or might perhaps return him to be placed with a family who would have ALL the information... I heard him, but something rose out of me and spoke: “this is not a gift we can return.” My husband and I left his office with Caiden, shell-shocked. We took the baby to the bathroom to change his diaper and just collapsed and sobbed in each other’s arms. We knew the long-awaited dream of raising our “normal” first born was gone.
I don’t wish to sugarcoat our decision to move forward with Caiden’s adoption. It was HARD. So hard. The grief of mourning “the dream child” is very real, no matter how Christian your faith is. Despite our trust in God, I trudged through every stage of grief, from denial to acceptance with much suffering and countless tears. I would not have survived without knowing the love of my heavenly Father and ultimately trusting that His plan (although imperceptible to me) was above any strategy I could come up with.
Nonetheless, I held onto my plans for quite some time before completely surrendering them. God knows, I am no quitter! I was gonna make a miracle happen! Caiden became my project. I would rehabilitate him into wellness! I proceeded to place him into every therapy I could find for him and to exercise and stretch his muscles at every moment in between. It was exhausting, but in my mind, the only option.
Going to any doctor’s appointment was always gut-wrenching. The pediatrician would inevitably show me how my plan was failing and how Caiden was not improving. All the questions about development were torturous. Has he rolled? No. Has he crawled? No. Is he babbling? No. NO, NO, NO. Just please stop asking! Most notably Caiden’s head was not growing and if it had not grown by eighteen months, he would be diagnosed with microcephaly and his chance of a “normal” life would become nonexistent. Still, despite all the prayers of family and friends, and our faith, nothing was happening. I would return home from every appointment, needing my mom to care for Caiden, as I crawled into bed and cried. I just wanted to disappear. I even thought that perhaps it would be better if Caiden and I would be hit by a bus. Very dark, but very true.
At the 18-month mark, the pediatrician reluctantly delivered the bad news. Caiden’s head had stopped growing at 4 months and had not grown since. He now officially had microcephaly. We left that downtown office on another grey day in New York City. I wanted to disappear into the darkness. But this time something would not let me. A seed of light was planted in my brain that day. As my feet hit the cold wet pavement, my mind heard the words, “What if Caiden is your pathway to heaven?” I asked God for more clarification. As I wheeled Caiden along, the Holy Spirit whispered, “When I was hungry, you gave me food. When I was a stranger, you welcomed me. I was naked, you clothed me. I was sick, you visited me. I was in prison and you came to me. Truly, I say to you, as you did it to one of the least of my brethren, you did it to me.”
At that moment I experienced an abrupt shift toward acceptance. What if I removed all expectation of normality out of my motherhood? What if I remember that the point to life is not happiness but holiness? What if I could begin to enjoy life even under these circumstances? What if . . .?
That day at home, I saw my son. Really saw him for the first time. He was smiley, chubby and without a care! Caiden was/is beautiful, just as he was/is, no improvements needed. Caiden didn’t seem to mind his inability to meet his milestones. Actually, he seemed to revel in the simplicity in the little he could do. He had an inexplicable joy, not determined by what he could do, but in who he was. My beloved son! Quite simply, Caiden was enjoying life in relationship with me. Why couldn’t I do the same? That day Caiden became my Spiritual Director. From that moment on, I allowed my son to teach me Joy in the Unknown, no matter what. It was no longer my job to “fix” Caiden, but to love him, care for him, dote upon him and, yes, ENJOY him. I finally felt free from the self-imposed burden to make Caiden meet my expectations. I was determined to stop striving and start enjoying.
As I move through the scary, exciting, mysterious unknown, my decisions have slowly been redirected toward choosing Joy for Caiden, my husband, and myself. I have learned I can’t earn a miracle or make it happen through hard work. Miracles are up to the Lord, not me. My only job as a mom is to give Caiden the best life possible. As we continue to work for rehabilitation, our focus is no longer to “fix” Caiden but on giving him strength and ability to access his most joyful life. We cannot determine what is to come, but we can choose how to respond. After five full years with Caiden, I can truthfully say, I delight with Joy in the beauty of who my son is and who I am becoming. Equipped with Joy, I immerse myself into the unknown. I pray you will join me . . .