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One of the most painful questions for parents who have suffered from the loss of a child is, “How many kids do you have?”

Not because we don’t want to share the beautiful stories of our children and their journeys, but because sometimes it can be hard to know just how much to share.

In today’s episode, I am speaking to Stefanie Boyce, a national speaker, teacher, yoga instructor, and most importantly: an extraordinary mother. Stefanie has taken her story of caregiving and loss and found a way to help parents find beauty and joy in the journey.

When her oldest son Jayden was diagnosed with Sanfilippo Syndrome, at just 3 years old, Stefanie and her husband felt their whole world shift from underneath them. Shortly after, they received the devastating news that their newborn baby girl, Brooklyn, had the same rare genetic disorder for which there is no cure.

For those that aren’t aware, children with Sanfilippo Syndrome develop until around three years old and then slowly become unable to walk, talk, and feed themselves. They shared 11 wonderful years with Jayden and 9 magical years with Brooklyn.

Stefanie and her husband welcomed a healthy baby girl (Elliotte) only three years after the diagnosis and had to navigate the difficult journey of caring for typical and terminal children at the same time.

Today, she teaches us how to find joy through the pain, cherish the present moment, and handle the complicated feelings attached to this journey.

She inspires us to feel our true feelings, ask for help when needed, embrace our fears, and move forward while honoring our pain.

Key Takeaways with Stefanie Boyce

  • Navigating difficult diagnoses and how to adapt to a “new normal”.
  • Caring for typical and terminal children in the same house.
  • Guiding children through the loss of a sibling.
  • Allowing faith to guide and inspire you through your journey.
  • Choosing comfort for your terminal children over lengthening their days on Earth.
  • Finding meaning and purpose throughout this journey of loss
  • How to navigate the “end of life” journey and learning to stay present so you only have to suffer when the time has come.
  • Cultivating gratitude in what is and not being afraid of tomorrow.
  • Trusting your gut and intuition as a mother, father, or caregiver.
  • Advocating for non-verbal children.
  • Learning how not to let fear control you.
  • Finding parents that are walking the same journey, unlikely friendships that can become a source of support and a great resource.
  • Dealing with feelings of guilt when you desperately need a break.
  • Realizing that self care is not selfish, but instead is a way that we can care for ourselves so that we show up for others.
  • Controlling how we show up to something that happens, and not trying to control what actually happens.
  • Allowing yourself to feel your grief, and how to turn towards healthy habits like exercise, meditation or yoga to tune into your pain.
  • Never be afraid of saying the names of the kids you lost. While painful, it’s definitely worth it.

Stefanie Boyce Tweetables

  • “I think a lot of us in this world would say that these super siblings, these amazing kids that walk this journey with us, are shaped in some really beautiful ways.” – Stefanie Boyce
  • “The suffering doesn’t equal the joy. It’s just that they’re both there.” – Stefanie Boyce
  • “I just believe that one day this will all come together and, maybe not make sense, but ‘make purpose’ of my pain.”  – Stefanie Boyce
  • “Sometimes the miracle isn’t in this Earthly healing. Sometimes the miracle is in who and what is shaped by the experiences we have.” – Jamie Freedlund
  • “The ability to stay present in the current experience is really what can unlock joy. And this is sometimes lost in the fear of what pain is ahead.”  – Jamie Freedlund


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