Hope has her third heart surgery tomorrow.
That’s not a sentence I ever imagined or wished to write about my child.
For quite a while this path that she has to walk was hard for me to accept. I kept dwelling on what her life would have, could have, and should have looked like if she were born perfectly healthy. And I kept thinking about how frightening it felt to love a child that you might lose.
Today I held Hope’s hand, cuddled her, and proudly told her what a big girl she is as she climbed on the scale herself, sat still for her EKG, held back tears for blood work, and lay patiently for her echo. Tomorrow I’ll sit in the waiting room, coloring (my go-to activity for passing time during surgery) and praying, as the surgeon works on her little heart.
In times like this it’s easy for those “would have, could have, should have” thoughts to creep back in… even easier for the fear of losing her to threaten like a dark cloud. But when those feelings come I know I can turn to God, to remember that He is enough, that He goes before us, that He loves our little Hope even more than we do. While I might not get to see or understand all the “whys” in this lifetime, I truly believe that God is using Hope’s life, every piece of it, for her good and for His glory.
And though I can’t fully shake that cloud of fear, there is an unexpected ray of light that pierces through. I find myself treasuring the little things more, living the day to day life moments to the fullest, grabbing hold of memories as they’re made. It’s hard to put into words… perhaps the best I can say is that I feel myself living life more deeply because I recognize how precious each moment is.
There’s a song called “All of Me” by Matt Hammitt, written for his son who lives with a complex heart defect. These words in particular capture well the feelings I wrestled with in the beginning and the commitment to loving with all that I am.
I’ll trade the fear of all that I could lose
For every moment I share with you
You’re gonna have all of me
‘Cause you’re worth every fallen tear
You’re worth facing any fear
You’re gonna know all my love
Even if it’s not enough
Enough to mend our broken hearts
But giving you all of me
Is where I’ll start