Life as parents of medically complex children is full of extremes: intense love for our children, deep exhaustion from handling their medical care, incredible resilience to keep going, and extreme anguish that comes with having to make decisions that none of us can even fathom until we find ourselves in that position.

Today’s episode with Suzy Boubion is so raw and so tender as we discuss some of those impossible choices we face as parents to medically complex children. She tells the story of her son Oliver’s brain injury during birth, how the experience of raising a medically complex child changed her relationships, including her marriage, and how the exhaustion of living in survival mode for years takes a toll on your mind and body.

And toward the end of the episode, we also touch on the topic of child loss and how Suzy is navigating her emotions and decisions that come along with that possibility for her own family. If that’s a sensitive topic for you, please listen with care.

Links:

Listen to Ep 33 of The Rare Life with palliative care worker Orley Bills.

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Access the transcript on the website here.

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