“I held my phone as steadily as I could, pointed towards my little boy in hopes of capturing his every move on video. I would have anticipated doing this for every milestone achieved by my three-month old baby Julian. This moment, however, was one that I had never in my 33 years of heightened anxiety and proneness to nightmares imagined happening to me.I was witnessing something that I would never have wished on the worst of enemies. As Julian’s tiny body was wracked with his first tonic clonic (grand mal) seizure, I knew we needed this footage to show his doctors, and I knew, no matter how nauseous and faint I felt, I had to be present, I had to stroke Julian’s tensed shaking face as I whispered his name and tried my best to communicate to him that he was safe.
That initial seizure occurred on the morning of my first day going back to work after three months of leave. Deferred to the regional hospital from our smaller facility, we received a diagnosis the next day. Julian had been monitored overnight on EEG and had had an MRI scan that revealed a condition called Polymicrogyria- a malformation of the gyria, the valley-like creases in the brain cortex. The part of his brain affected was somewhat extensive, covering the majority of his frontal lobe in both hemispheres. Julian would need therapies, starting immediately- physical, occupational, and speech- to address low muscle tone, global developmental delays, and potential feeding issues. Our neurologist did not give a prognosis. Rather, he emphasized that every child is different, and it was too early to anticipate to what extent Julian’s brain would be affected as it grew, and correspondingly, to what extent his cognitive and physical abilities would be delayed, compromised, or stalled altogether.
As I tried to process this slap-in-the-face, mind-numbing information, I turned to my phone in attempt to ease my anxieties. I googled ‘Polymicrogyria’ anticipating that this- just as every other of my hypochondriacal responses had thus far in life proven- would be a less scary situation than I was imagining. This diagnosis would merely be a many-syllabled word that we would overcome with therapy and dutiful parenting. As I reviewed Google’s search results, my heart sank. I saw children in wheelchairs with feeding tubes, blank stares, and the phrase ‘shortened lifespan’ in the first five results. I closed down my search window, ran to the railed toilet in our inpatient bathroom to throw up my hospital breakfast, and curled into as tight a ball as I could in the bathtub. I felt nothing, I had been taken to the farthest reaches of what I could understand and accept as my life. My thoughts turned dark, and I wondered if I should never have been born, if only to save my beloved son from what I now believed would be a life of constant seizures, pain, and potentially – I didn’t know if this was a best case or worst case scenario- a lack of awareness of his life altogether, with him subsisting in a vegetative state, surviving because of feeding tubes, supplemental oxygen, and a constant flow of anti-seizure medications.
The next year showed me that I could actually sink into a lower place emotionally than I had experienced that first day in the hospital. There were instances when Julian’s seizures were so severe that he would be in status epilepticus (a seizure that spirals out of control to last 30+ minutes), unresponsive to standard dosages of medications, and would eventually have to be tranquilized with heavy duty benzodiazepines. My husband and I spent one month inpatient with Julian, as his daily seizures rattled his tiny body multiple times a day, and we didn’t know if we would ever leave the hospital with our precious boy still with us.
Julian would bounce back from the bad weeks to moments of growth and clarity astoundingly smoothly. Though by 6 months it was very apparent that he was nowhere near his peers in developmental milestones, his smile gave us strength to move forward if only to give him the best shot at life as he deserved, and we believed he deserved the world. When he was able, he had wonderful therapy sessions where we worked for months on the smallest of things, things every other parent we knew took for granted. Julian could not hold his head up until nearly one year. He started rolling at 11 months. Now, at 15 months, he is babbling, sitting with extensive support, making some eye contact, and rolling with abandon.
His seizures will always be a battle; because of the nature of his condition, we can expect that Julian will have very difficult-to-control seizures for the rest of his life. He is currently on five medications and we have tried the ketogenic diet, CBD oil, and numerous other medications that did not work in any way. His cocktail of meds as of now seems to be the most effective that we have found for not wiping out Julian’s seizures, but at least for minimizing them. That might mean five seizures a day still. When I tell friends and acquaintances that my son has a condition that causes epilepsy, ninety-five percent of the time they respond by saying ‘at least that is treatable.’ I harbor no anger towards these people- I would have thought the exact same thing before I learned differently though first-hand experience.
I no longer mourn the notion that I may have a son in a wheelchair. I have accepted that I may never be able to have a conversation with Julian using spoken language. If I reflect on my feelings a year ago, not only would these notions have caused denial, mourning, and anger, they would have made me feel hopeless. I believed to a large extent that life without these basic functions would not worth living.
Julian has shown me that this is simply not the case. I communicate with my baby boy every moment that we are together. He may not be able to see me- a clinical component of his Polymicrogyria is a compromised visual process known as Cortical Visual Impairment. He may not be able to hear me- his auditory processing is also compromised- but when I hold Julian, we communicate to each other more love than I have ever experienced. When I run his hands over my face, he feels the hills and valleys of my forehead, eyes, nose, mouth, chin. And I do the same to him. In that way, we say hello to each other.
As we learn more about Julian’s genetics, the causes of his condition, we learn that his mere survival and presence on earth is not only unlikely; his survival, even during his first weeks in utero, is downright shocking. If we had a cherry pie for every time a neurologist or geneticist said ‘Hmm…. I’ve never seen this before,’ we would be feasting on delectables for life. Julian started out as a 1 in 50,000 probability; additional layers of testing have now isolated him to essentially having a unique genetic makeup that has not been observed in all of medical literature. Whereas those realizations initially terrified us, they now confirm what we already know: Julian is a miracle. He has fought hard to be on this earth, and the more confounding the base elements of his existence, all the more remarkable his presence with us becomes.
Surrounded by constant uncertainty, I have been forced to accept that I am not in control of my life, or of anyone’s experiences or fates on this earth. Finding out that I was pregnant back in July 2017, my heart filled with love for my unborn child, and my head filled with hopes: he would be a musician just like my husband and me, he would love art, be multilingual, have an affinity for animals, and would attend the same rigorous college-preparatory school I had attended in my hometown before heading out into the world as a scholar of something, anything of his choosing. Julian would be a little version of the best elements of his two parents and would correspondingly discard those elements that we choose to minimize in our own personalities and bodies. He wouldn’t be short like me; he would be tall like his dad. He would have my button nose instead of what I have always jokingly referred to as my husband’s ‘majestic’ nose. Though it has taken some time, I have honestly and fully discarded those hopes that I once held so dear. I have re-evaluated what it means to have a good life. I have re-visited the traits that I believe are most important for people to embrace and cultivate within themselves. Empathy, compassion, kindness. Above all, love. Julian loves his life. I love Julian more than I ever could have imagined. That, unlike anything else in our situation, is straightforward and undeniable.”
This story was submitted to Love What Matters by Jenna Kloeppel, 33, of Albuquerque , New Mexico. Follow her journey on Instagram here. Submit your own story here, and subscribe to our free newsletter for our best stories.
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