Imagine navigating through a labyrinth of complex medical needs for your child, coordinating multiple specialists, and grappling with the emotional toll of balancing her care with your own work. Emily bravely shares her personal journey of exactly this rollercoaster ride in this touching episode. Join us as we venture through the various stages of pediatric surgery from Emily and Ashlyn’s perspective; from the very beginning of symptoms discovery, to research, to surgery preparation, and finally the surgery itself. Each stage unravels fresh emotions and challenges. The post-surgery recovery phase is a journey in itself, involving intense 24-7 care and the struggle of finding new normalcy.

The 10 stages:

  • Symptoms appear – you know something is wrong but don’t know what; seek out specialist for answers
  • Discovery – need for surgery is determined; denial is often involved
  • Research – research all possible options to try to avoid surgery or make sure it’s the right surgery
  • Surgery Prep – you come to the conclusion this is the right next step and now you get very busy with all the details to prepare. Anxiety and jitters propel you into managing each and every detail – as if you are nesting for a newborn baby
  • Surgery Day – game time. You’ve lost sleep, been anxious, worried, researched, cried. Now it’s game time and you’re just ready for it all to be over. You are ready to enter the battle that is postop recovery- as ready as you can be.
  • Post-op Recovery – all hands on deck to help recovery go as smooth as possible – it’s like having a newborn, everything for them comes first, hardly any sleep but unfortunately the main difference is there is pain to contend with. You’re all exhausted and out of sorts.
  • The Black Hole: the term we have fondly dubbed for the month following major pediatric surgery when its pain medication management, side effect management, medical equipment, wound care, infection watch, follow up appointments, etc.
  • Light at the end of the tunnel – a  month from surgery when you finally see your kid doing something they couldn’t do before surgery or being joyful, a kid again. You can finally take a deep breath for the first time since learning surgery was coming.
  • Clean up of emotional fallout – the month 5 weeks after surgery and on. You and your significant other and your family pick up the pieces that all fell to the wayside while you were surviving. Siblings’ emotions spill over, emotional processing of the trauma.
  • Life after surgery – by month 3, life has a new normal and things are looking bright again or manageable – you’ve climbed out of the black hole. Leaving it forever changed.

In the midst of it all, Emily finds time to share her reflections on the importance of gratitude and appreciation, even during challenging times, and how important it is to celebrate small victories along the way. Listen in as Emily opens up about the emotional weight of her journey, and the extraordinary resilience it takes to normalize medical complexities and appreciate the small moments of life, even after a difficult experience. Be sure to subscribe, reach out, and share our podcast with those who might find comfort and solidarity in these stories.

To get more personal support, connect with us directly at CharlottesHopeFoundation.org.