Making the Difficult Decision to Step Back from my Career to be a Full-time Caregiver
Written by: Daphni Eissing
I shared the post below on my LinkedIn after making the decision to step away from my career. Having a child diagnosed with DYNC1H1 and other related comorbidities has been difficult, and this decision was not made lightly. I hope that by sharing my story, I can help other families feel less alone.
I’m happy to share that I’m starting a new position as Chief Caregiving Officer!
After many fulfilling years in the workforce, I have made the heartfelt decision to step away from my professional career to focus on caring for my youngest son with Lissencephaly. Balancing work and caregiving has become increasingly challenging, and I believe that dedicating myself to my family at this time is the best choice for our collective well-being.
For those unfamiliar with Lissencephaly, it is a rare and challenging neurological condition that is characterized by the smoothness of the brain’s surface. This condition results in severe developmental delays, seizures, feeding issues, and significant health complications. My son Conor has a Vagus Nerve Stimulator to control his seizures, is very low muscle tone and is unable to walk, and he is 100% G-Tube fed. He requires constant care, specialized attention and significant emotional and physical support.
Over the years, many people have asked me, "How have you done it all these years? I don’t know how you do it." Some even call me "Supermom." The truth is, like many parents, I’ve simply done what needed to be done out of love and commitment. There’s no secret formula or superpower—just an unwavering dedication to my son’s well-being and a determination to face each challenge as it comes. My son’s resilience and spirit are my constant inspiration, and they drive me to give my best every single day.
While I will miss my customers, colleagues and friends, I am looking forward to the precious moments and milestones that I will get to witness with my son and will cherish every moment of it. My goal is to continue advocating for his needs, coordinating with healthcare professionals, and offer him the best quality of life and the support he needs to thrive.
I hope to stay connected and share our journey as we navigate the challenges and celebrate the victories that come our way.
Thank you for being a part of our story. #DYNC1H1 #lissencephaly #caregiver #raredisease 💙 💜 🙏