Episode 362: Even Still, She Was Joy - Ellie's Mama

Kayla called her God's baby from the very beginning. She had been through six or seven miscarriages before Ellie arrived, and from the moment Ellie was born eight weeks early with a heart condition so severe the doctors were not sure she would make it, Kayla understood something in her bones: this child may not be hers to keep. She was only hers to love. And love her she did. For 574 days in the hospital. Through intestinal surgery and open-heart surgery and ECMO twice and sepsis and a tracheostomy and every obstacle that life and medicine could throw at a tiny, premature little girl who had no idea she was supposed to be defeated. That is the thing about Ellie. She did not get the memo. She gave wicked side-eyes to the nurses who dared take her temperature. She pretended to be asleep when the physical therapist walked in, then opened her eyes the moment she left. She played with her balloon with her oxygen saturation in the thirties. She said mama for the first and only time right before her tracheostomy, as if she knew exactly what her mama needed to hear. When her surgeon came in with the clamp trial running and the whole room holding its breath, Ellie was kicking. She was always kicking. And in her final months at home, through all of it, she was happy. Kayla says near the end of this conversation something that I have not been able to stop thinking about. She says she has joy and she has grief, and one is her right foot and one is her left foot, and you cannot walk without both. She will walk like that for the rest of her life. And I think that is Ellie's greatest gift to her mama. Not just the side-eye and the balloons and the rattle toy and the one perfect "mama" - but the living proof that joy and suffering are not opposites. That a person can be in both at the same time, fully and completely, and still choose joy. Ellie did it every single day of her life, with her oxygen in the thirties and her chest full of tubes and the whole medical world bracing for the worst. Now, her mama, Kayla, tries to follow in her daughter's footsteps as she navigates this new life without her. Kayla also says this: there is an Ellie-shaped hole in her heart, and she will die with it. Not as a wound, but as a shape. The exact outline of a little girl who proved that even in the hardest, most impossible life, joy finds a way through. Not because Ellie's life was too small. But because it was so very full.