from the heart: the hard questions and the beautiful present.
Today I measured Florence and realized she would nearly reach my hip if she could stand. She’s 3 inches short of 3 feet! It made me smile, and yes, it made me sad. I wish with all my might I could pull her to her feet, and see her stand. I wish I could feel her little hands reach for me, cheeks brushed up against my legs, playing peekaboo with strangers.
She takes after her 6’6 papa. This is so fascinating to me. I grew a big girl!
She could be/would have been taller than me as a young lady.
Oh, how do I word these things properly: is it impending death? My daughter is dying? A “degenerative” neuromuscular condition? I don’t want to talk about it?
Will we one day let go, or keep pushing medical interventions on her?
Oh, how vulnerable this place is. Do I know that without interventions, her life would have ended many months ago? Yes, I do.
My life would have ended too, 100 or so years ago, before surgeons discovered they could operate on the spine and stop the progression of a curvature. I would have suffocated.
But I was “healthy”. Does this make a difference?
How long do we run? When you are pushed to the point of complete surrender, suddenly you aren’t afraid of death anymore. Suddenly, you know you aren’t in control, and the fear leaves. Palms wide open, heart at rest.
There is a lot of peace to grab from the heavens. When you’re thrown into situations like this, you have a heightened sense of clarity, of grace and of peace. I’m not even afraid of going to the hospital anymore, because I know my limits and I know my God.
You see, part of the reason we live in the moment, is because the moment is all we have. What we have is a little girl, that is not your average little girl. How her life will unfold is a mystery. She could live for many more years. We could see a miracle. She could pass away this winter.
What do I know? I know her life is precious, whether it’s 2 years long or 92 years long. She has the same value as the 89 year old philanthropist with Alzheimer’s, the 36 year old with breast cancer and four kids, the 62 year old with heart disease and a mortgage.
She was born and she lives and will live and has lived.
But most importantly, we have the opportunity
, the gift of being her parents.
We are privileged to call her daughter. And if we look at her life, measured in it’s fullness, not by the number of days she will live, not by status or belongings, accomplishments or milestones, if we strip it all away and look at her beautiful heart and soul, then we come to realize, she has a purpose, and she’s living it out the best that she can.
She’s living it out, in all it’s fullness. And in turn, she’s teaching us how to do this too.