Letters to Taylor: On Control
You’ve lived each day with your body refusing to be under your control.
Morning, Tay. I’m thinking you’ll wake up any minute, but it’s strange how I keep checking to see if you are still breathing. My eyes play tricks on me because the rise and fall of your chest is barely there. Paranoid much? I’ve discovered that I’m not afraid of death itself as much as I fight the fear of not knowing when it will come.
Yesterday when the palliative care team came by to see you, I had the main floor of the house immaculate. Before you were born, I didn’t go to bed unless the toilet paper was hanging correctly. No joke. I just about drove myself crazy with having every little thing in order. It was no different yesterday, everything was in its place. Of course, our tribe was all at work and school, so no one was here to move anything. I soaked in the glory of a clean house for two hours, until I remembered one of your preschool messes from years ago.
Somehow your Houdini-like skills had gotten the locked pantry open. I don’t know if you wanted to drink that bottle of syrup or grab a waffle to go with it. But you surely enjoyed it. You soaked your little toddler recliner’s interior with syrup (at least those fruit snacks you shoved inside weren’t lonely any more) and left a permanent hardened pool on the carpet. I tried every cleaner and spot removal method to no avail. I kind of miss that carpet.
One of the nurses mentioned that her daughter has a special needs child and her house is never sparkling clean! As if a clean house means I have my act together. It’s funny how easy it is to see one person’s control issues with collecting to be worse than another’s control issues of cleaning. What causes chaos for one brings comfort to another.
After you came into the world, it took me years to recognize that while order and cleanliness have their merits, they shouldn’t be the priority all the time. There are things more important. So much more important. Trust me, we won’t be on an episode of Hoarders any time soon. But when things feel out of control, I think we all try to control things the best we can. We totally forget that God is never out of control.
Disease has been reversing your skills one by one. First it was your voice. Then your songs. Gradually, your walking. Then sitting on your own. You want to remember how to drink from a sippy cup, but at times, your brain is forgetting how. If only I could take a drink for you. Somehow, though, you keep going. You haven’t smiled or laughed in weeks. Here you are, facing circumstances outside your control, yet moving on, day by day.
For so much of your life, you’ve been teaching me how to let go. I don’t think I’ve really learned the lesson yet. That’s why I’m still studying it.
Letting go of you will be the hardest thing I’ve ever had to do.
Your eyes just fluttered, and your arms are beginning to stretch so you’ll be awake soon. I’ll stop writing and make your oatmeal. I love you, Girlie.