As I read various articles about the Zika virus, I often come across images of distressed young mothers in crowded waiting rooms and doctors trying to navigate a complex situation. I can’t help but notice that the infants portrayed with small, irregularly shaped heads bear a resemblance to my son, Liam, when he was born. A wave of sadness washes over me as I reflect on those families, and I find myself pondering how we managed when Liam received his diagnosis of microcephaly.
I was still in a haze of sleep with Liam nestled in a bassinet beside my hospital bed when the neurologists arrived. He had been born in the early morning hours, and my sleep had been fleeting. Drowsily, I tried to grasp their words. “What’s wrong?” I mumbled as I propped myself up in bed. “He has microcephaly,” one doctor said bluntly, adjusting his tortoise shell glasses. “Didn’t you know this during your pregnancy?” Thus began my life “after”—a life that occasionally mirrors my old one but often feels like a different reality entirely. I now find myself categorizing experiences into “before” and “after” moments.
During my pregnancy, doctors had monitored Liam’s head growth via frequent ultrasounds. They assured my partner, Mark, and me that there was no cause for concern since his head was still growing, albeit on the smaller side. After several discussions with a senior radiologist, a kind older gentleman with smile lines and bright gray eyes, we let go of our anxiety. In truth, I had convinced myself to stop worrying. I suppose I needed this mental shift to endure the remaining months of my pregnancy. Seeking a second opinion didn’t cross our minds; we were at one of the top hospitals in the city, with a team of doctors who had delivered many of our friends’ children.
Microcephaly is a neurological condition characterized by inadequate proliferation of neurons in the fetal brain; “micro” signifies small, while “cephaly” refers to the head. A smaller head correlates with reduced brain size, as brain growth is what leads to the expansion of skull bones. The causes of microcephaly are varied, ranging from chromosomal abnormalities to maternal health issues, such as diabetes or alcohol use, and sometimes even unexplained genetic factors. Many years later, we would discover that for Liam, it was due to a recessive gene that currently lacks a test.
Children with microcephaly typically face significant challenges. Generally, their motor skills and speech are impaired, with hyperactivity and cognitive delays often present. However, the extent of these challenges varies from child to child. Unfortunately, there is no cure or treatment for this condition.
The torment lies in having a diagnosis without a prognosis. No one could predict the severity or specific challenges Liam would face. For years, we were told not to expect too much—an impossible task for any parent.
Now, as I navigate the present, I find myself holding two conflicting thoughts. While I can articulate Liam’s diagnosis and accept it as a reality, I still have days where I cannot fathom how this misfortune could have happened to us, to my family, and to Liam. Like many parents, we assumed our child would mirror our hopes and dreams. We irrationally believed that Liam would have the same opportunities as other children.
Instead, we find ourselves worrying about Liam’s future. Will he be able to live independently? Will he find a job or experience love? Unlike with typical children, planning for Liam’s future—even in small increments—feels precarious.
When Liam was born, I often wished I had faith in a higher power; I thought that it might provide some comfort. I would have appreciated any explanation, no matter how simplistic.
Years ago, I had purchased small sandalwood figurines of Ganesha, the Hindu deity known as the remover of obstacles and the lord of wisdom, during a trip to India with my aunt. Mark and I began placing tiny Ganeshas around our home, as it felt fitting. We learned that rubbing Ganesha’s belly was considered good luck, so each night before sleeping, we did just that, silently offering our wishes. I never inquired about Mark’s wishes, but mine evolved daily. I wished for Liam to reach milestones: to roll over, to sit up, to hold a cup, to crawl, to walk, and to speak.
As I would tuck Liam in for the night, I would hold him close and make a pact. “Let’s make a deal,” I would say. “You do your best, and I will too. Just get as far as you can, and we will support you every step of the way.” In those moments, my love for Liam felt so intense it was almost suffocating. The love we shared made the situation feel all the more tragic.
After Liam’s birth, I encountered a mix of emotions from others, many of which I felt myself: optimism (“I’m sure he will be fine”), grief (“You must feel lost”), skepticism (“Are the doctors certain?”), hope (“You never know how things will turn out”), and denial (“He looks fine”). People offered well-meaning advice: “Join a support group,” “return to work,” “take time off,” “live in the moment,” and “prepare for the future—Liam will need you.”
Now, at age 9, Liam is, by all accounts, an adorable, affectionate, and inquisitive child. He has been delayed in reaching milestones, but he perseveres. For years, his ability to communicate verbally was limited, yet his determination to express himself was unparalleled. He now constructs four- and five-word sentences—a milestone we never thought possible, yet somehow, we still find ourselves questioning it.
While these achievements bring joy, they are often bittersweet. Despite the progress Liam makes, he will never “catch up” to his peers. This reality fills me with anger. Yes, it’s been nine years, and perhaps some would suggest that it’s time to accept his disabilities. However, I believe I will always experience moments when I confront the chasm between my expectations and our reality. Despite the daily joy, laughter, and pride, feelings of anger, sadness, and disbelief linger close by. This is my reality.
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In summary, the journey with Liam has been filled with both challenges and triumphs. As we navigate the complexities of his diagnosis, we continue to hope for progress and grapple with the emotions that accompany the reality of his condition.
Keyphrase: microcephaly journey
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