“Own your story. Write the ending. Rise Strong.” – Brené Brown
Eliza turned two just over a week ago. I can hardly believe it’s been two years, but then I can’t even remember life before this precious girl joined our family. The past two years have been a rollercoaster to say the least, but despite the dips and turns that often left me with a pit in my stomach, I wouldn’t trade them for the world. Eliza Emmaline is joy! And while that first year (with its five hospital stays and two surgeries) often had me feeling like I was barely able to keep my head above water, this second year has felt so much easier. It may be because we established a routine and know more about PWS than we did that first year, but I think more than anything, it’s because we’ve gotten to know Eliza even better. She is determined, resilient, funny, and engaging. She holds her arms out to strangers at Target but will rarely let me keep her in my own arms long if her daddy is in the room. She laughs hysterically at herself and also at her sister, but as if on cue for her entrance into toddlerhood, she has also recently discovered the power of a good tantrum. So many people have commented to me after holding her that they marvel at the calm they feel with her, and I thank God every night for the privilege of being her mama.
But there is a part of me that still hurts for the challenges I wish didn’t have to be a part of Eliza’s story. Just last week, I saw my sister-in-law’s pictures from the day she was born for the first time, and I had to keep myself from weeping at the sight of them. Even two years later, I can’t look at that delivery day with all its apparent joy and optimism without remembering the crash that came the following night. And a piece of my heart is still broken for the dreams we had before receiving Eliza’s diagnosis two weeks later. I don’t want to live in fear of an insatiable appetite or mental illness, but I can’t pretend that both of those possibilities don’t terrify me to my core.
But then I look at my sweet two-year-old and breathe into the promise of her creator that His plans for her are good…plans to give her hope and a future. I pray that she grows into a woman “clothed with strength and dignity who laughs without fear of the future” (Prov. 31-25). And I remind myself that in so many ways, big and small, it can start with me. Start with prayer, with modeling a life prioritized with love and giving, and with a reckless pursuit towards finding a treatment and spreading awareness.
Like any milestone, birthdays serve as a chance to stop for a moment and reflect…a chance to remember how far we’ve come and to lean again into the hope of what lies ahead.
Eliza will someday understand more about this challenging diagnosis she had no say in being born with, but I pray that she sees it as a mere drop in the bucket compared to the overwhelming control she will have over how she leads her life. I want her to own her story…all of it…but more than anything, I want her to know the power she alone holds in how it is told. And knowing her even at two, I believe in my heart of hearts that it will be told with humor, with grace, with faith, and with so much love.
So happy birthday, dear Eliza! Own your story. Write the ending. Rise strong.