It had been a challenging week. My 18-month-old daughter, Lily, woke up one morning with her first stomach virus. Until that point, she had been the picture of health, and I thought it was inevitable she would catch something eventually. For days, she endured bouts of vomiting, but I was relieved when she finally began to improve. I thought, finally, we could return to normalcy.
Little did I know how mistaken I was.
The following day, I woke up feeling queasy myself. Thus began a day that would be etched in my memory forever. After an agonizing day of sickness, I managed to drag myself out of bed, still feeling nauseated. I was sipping ginger ale while Lily played with the condensation on my glass. As I chatted with her, I suddenly noticed she was staring blankly ahead. In a terrifying instant, she fell backward.
Confusion washed over me before I realized what was happening. I scooped her up, realizing she was seizing. Panic surged through me as I screamed for my husband, Mark, to call 911, holding her as she shook uncontrollably. Her eyes rolled back, and her breathing became erratic, accompanied by gurgling sounds. Mark, on the line with emergency services, and I frantically relayed our address, pleading for help.
I had never felt such fear. It seemed like an eternity before our precious girl stopped convulsing and drifted off to sleep in my arms. Both Mark and I were in tears.
“This must have been a febrile seizure,” I said to Mark, recalling that they are common in toddlers with fevers. That had to be the explanation.
Once we reached the hospital, Lily began to scream, and the doctors observed her experiencing what appeared to be absence seizures, but she did not have a fever.
Now, six months later, we’ve seen one more grand mal seizure, two normal EEGs, and countless absence seizures, yet we remain without a diagnosis.
Before this, I never thought such a situation would befall me or my child. Until that week, Lily had barely shown signs of illness, and now I find myself parenting a child with complex health challenges. There’s no preparation for this. Nothing can ready a parent for witnessing their child seize in their arms, or for the barrage of tests, medications, and hospital visits that follow.
At night, I lie awake, consumed by worry. I fret over the possibility of another seizure, the additional tests we might face, and what they may reveal. I’m haunted by questions about her future and health. Will she outgrow this? Will she still have seizures as a teenager? Could these episodes be linked to her speech delay? What are the long-term effects of her medication? Will we ever find answers?
I don’t have the answers to these questions. There’s a vast unknown ahead of us. But I do know that Lily is incredibly strong and brave. I admire her tenacity, a quality that has challenged me during her toddler years but will surely serve her well in adulthood. She is a tiny warrior who will conquer every hurdle in her path. I eagerly anticipate the person she will become. Seizures won’t hold her back.
In the meantime, I will continue to worry, wait, and advocate for her, doing everything I can to find answers. I will take each day as it comes, drawing inspiration from her resilience and striving to be the supportive mom she needs.
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In summary, navigating the complexities of raising a child prone to seizures is fraught with challenges, but the strength and spirit of your child can inspire hope and resilience.