Letters to Taylor: On New Beginnings
This week you’ve settled into a new groove. It’s one that I knew would one day come, but oh how strange it feels. While we are down to days of seeing the rise and fall of your chest, Daddy whispered last night in my ear, “She’ll be well soon.”
I can hardly express what a beautiful thought that is. As a human, I sometimes wished for a reverse of your disease. If only we could go back to that moment in time when you took a big lick from my ice cream cone, that last day you said any words. “Ice teem.” 13 years ago now.
Or I might go back to the day you sang “Jesus Loves Me” in the back of the car as we drove around looking for the house that we’ve lived in for 18 years. Parts of me wish for a do-over. I believe the reason for that is what you’ve instilled in me. It’s a strength I never knew could exist. I’d live back through the worst moments we’ve had a billion times over to get to the best that we’ve shared. I’d never trade you for “normal.” Special is completely perfect.
For many years of fighting MPS, you had trouble sleeping. Your brain wouldn’t stop running and you couldn’t turn it off. While you are at the opposite end of that spectrum and your brain insists on resting. I am the one struggling to turn off my brain and rest.
There are so many beautiful moments of your life that I’ve revisited in my mind. But this thought of finally being truly well? Completely whole and free from the disease of this world? This is all a mama ever wants for her babies.
A new beginning is ahead for you. I wish I had words to describe how wonderful it will be. Your body will be brand new and your mind will be too. Your beautiful soul and spirit will have a shiny new place to live in and it will be more perfect that we can fathom. No more struggles to make words form. No more body parts that won’t work no matter how hard you try to make them. No more seizures. No more pain.
There is hope on the horizon that we’ve not had before, Sweet T. Most of last night, pain sliced deep within my chest, because the thought of giving you back to the One who gave you to me sears my heart. But within that same pain is joy and peace and love. Because I can’t fix you. I can’t heal you. I can’t bring the words back to your mind or take away the pain. But yes, you? You will be well soon.
When I was a little girl and Papaw Duck took us on vacation, I can remember asking a million times, “How much farther?” Papaw’s favorite answer was: “We’re closer than we’ve ever been.”
My precious girl, we’re closer than we’ve ever been.
Jesus loves you.
I love you too.