On Thanksgiving day, Genevieve sang Fight Song to me – a little shy, slightly congested, swaying back and forth. She is 7 years old – probably just her favorite song in that moment, if I asked her tonight, she might name a different one.
She doesn’t know her power. This is her song, I need her to fight, to take back her life and not let Aortic Stenosis and Regurgitation prevent her from living happy.
On my commute home, another Rachel Platten song came on the radio as I was flipping through the stations – Stand By You. Just as Fight Song is Genevieve’s tune, Stand By You might be mine. It is a definite departure from the music that I usually listen to.
“And love, if your wings are broken
Borrow mine ’til yours can open too
Cause I’m gonna stand by you
Even if we’re breaking down, we can find a way to break through
Even if we can’t find heaven, I’ll walk through Hell with you
Love, you’re not alone, cause I’m gonna stand by you”
I know there will be pain, I know that the first few days or so recovering from surgery will be walking through Hell – breathing tube, chest tubes, IVs – getting back up on your feet and taking those first steps again. So, Genevieve, my love, you are not alone. You have the most incredible team standing beside you – your brother, your parents, your grandparents, uncles & aunts, cousins, the Cardiac doctors & nurses, all of our friends, all of your friends & classmates and the CHD community.
The outpouring of love and support for you is amazing. You are not alone and so many more people than your immediate family are standing by you. They make it possible for me to be there for you. Neither of us are alone and for that I am thankful and blessed.
PS – Still no call from the team at Boston Children’s Hospital. The endless waiting may be driving me batty. If no call tomorrow, I will call them on Wednesday . . . or maybe tomorrow afternoon because I suck at waiting patiently!