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Family dynamics are frequently idealized, with the assumption that challenges will resolve themselves over time. However, the reality can be much more complex. A year ago, I took the unconventional step of applying a business mindset to my family life, approaching it as I would a startup at my company, ProSense. While this approach may seem unromantic, the outcomes have been remarkably positive.
In 2023, my journey began when my daughter Teia received a diagnosis of PURA syndrome, an exceedingly rare genetic disorder. Faced with the news, I experienced not just fear, but a profound sense of despair. It felt as if my world had come crashing down. Yet, I quickly realized that confronting this challenge had parallels with running a business. The skills I had developed in managing teams and projects could now be applied to navigate this life-altering situation.
Embracing the Unknown
PURA syndrome is a debilitating condition with minimal public knowledge to draw from; approximately only 750 people have been diagnosed with it worldwide, and there are less than 50 published studies concerning its effects. Amid this uncertainty, the prevailing advice was to “accept the situation” and strive for happiness despite the difficulties. However, as an entrepreneur accustomed to tackling the unknown, I viewed this as yet another challenge to address, spurring me to reject acceptance in favor of action and innovation.
I recalled the moment in 2019 when I secured my first enterprise client for my small development agency. I faced an overwhelming nine-page onboarding process filled with requirements I could not fulfill. Instead of panicking, I broke the tasks into manageable steps, recruited qualified individuals to assist, and successfully completed the requirements.
Applying this same logic to Teia’s condition felt daunting, given the emotional stakes involved. However, I approached it by categorizing the known symptoms and those we anticipated. The most pressing issue was Teia’s inability to communicate verbally.
Finding specialists who understood PURA was challenging, as few had experience with it. I sought advice from pediatricians and geneticists, who suggested I allow two months for her to show progress with a given therapist before changing course. Surprisingly, this turned out to be effective guidance.
The Power of Delegation
Eventually, I discovered a speech therapist who informed me that significant daily interaction was necessary for Teia to learn to speak. The requirement of “eight hours a day” felt overwhelming, particularly as I was already balancing responsibilities for clients across continents. My initial reaction was to pause my business to focus entirely on her needs, especially since early intervention is crucial for development.
While delegation is a standard practice in business, women often face scrutiny when attempting to delegate within their families. Driven by my entrepreneurial instincts, I decided to challenge that bias.
At the time of Teia’s diagnosis, my husband and I were separated. Research indicates that couples with children facing significant medical challenges often experience higher divorce rates. I realized that although we were apart, our circumstances necessitated collaboration. We needed to unite our efforts for Teia’s benefit, and so we reconciled.
Our renewed partnership was shaped more by pragmatism than romance, centered around a shared goal: supporting our daughter’s development. Yet, our joint efforts alone were insufficient. After extensive searching, I finally found a remarkable nanny who not only had medical experience but also shared a language and culture essential for effective therapy, even from thousands of miles away. We formed a cohesive unit: our speech therapist served as the strategy lead, the nanny managed day-to-day activities, my husband coordinated extracurricular activities, and I oversaw budgeting and overall operations.
Our family began to function like a startup, implementing standard operating procedures, scheduling regular meetings, and operating as a highly efficient team.
Motherhood as Leadership Training
The experience of motherhood provided me with invaluable lessons that enhanced my leadership abilities. Traits such as empathy, patience, and adaptability became crucial in both my role as Teia’s mother and as a business leader. Managing the nanny, a vital part of our team, reinforced the importance of emotional leadership.
I recognized the need to foster a strong emotional connection with her role, understanding the intense emotions and challenges that come with working closely with a child facing significant hurdles. To combat potential feelings of stagnation in our long-term pursuit, I instituted weekly check-ins and maintained a diary tracking Teia’s progress, which fostered motivation and provided hope.
These concepts have since been translated back into my business practices. We now hold emotional check-ins alongside our regular retrospectives and even initiated “five-minute venting meetings” to allow team members to express frustrations openly, contributing to a healthier work atmosphere.
Systematic Approaches for Success
There is no blueprint for raising a child with a rare condition, just as there is none for starting a business. It is a continuous learning process filled with adaptations and perseverance.
Viewing family life through a business lens has not sterilized our interactions; rather, it has fortified our family unit. This approach provided a framework, a strategy, and—most importantly—produced outcomes that previously seemed unattainable.
Source
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