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Letters to Taylor: On Dementia
You are an expert.
It’s almost time to turn the lights out once again. Night has come and after preparing you for bed, I’ve paused with my usual thought.
Is there anything else you need?
I wish you could tell me, but we’ve passed that hurdle long ago. Words no longer come to your lips and now, the only sounds you make are the occasional painful outcry or an uncontrolled gasp or groan.
I hope you sleep well tonight. On nights of your restlessness, I’m tempted to just sit and cry. We’ve tried so many things to help you. Medication, essential oils, all-natural sleep aids, light routines. You name it; we’ve tried it to help you rest. But your brain simply doesn’t turn itself off. I can’t imagine how exhausting that is for you! The few times I’ve struggled with insomnia, it certainly left me struggling.
You keep shifting your head from side to side tonight and I am wondering:
Do you know who I am?
I’m your mama.
Sometimes you look past me into the distance, seeing things that I can’t. I know you don’t always recognize me and that’s become more common over the years. Some have compared your disease of MPS to a childhood Alzheimer’s because of the way that your memory and abilities are gradually stolen. Dementia keeps both of us guessing and it’s a nightmare.
It’s tormenting me; I can’t fathom what it must be like for you.
I’m so sorry. I wish I could something. Anything.
Your brain is pervaded with destructive disease and there are parts of you continually clicking off and on. How frustrating that must be. Since I don’t always have physical indicators for when you are “on,” I simply trust that these messages are getting through in some way.
I began writing these letters to you to tell you what’s on my heart. I know you’ll never read them on this side of heaven, but after I write each one and read it to you aloud, I feel a stronger sense of connection radiating from you.
Now people might think that’s a little crazy. They would see you and not know how to talk to you since you can’t participate in a conversation. They would stare at your uncontrolled eye movement or arms and legs that randomly do their own thing. They would think “I don’t know how to communicate with someone who can’t control her own body. She’s not going to respond to me, so I won’t say anything.”
I feel badly for folks like that. They are missing out on getting to know the real you.
There is so much more to life than bodies. It’s strange how humans can get distracted by physical differences and miss the beautiful spirits of the world. It’s a shame that we can be so self-centered that we think our method of communication is the only one that exists. We are so bold to think that our means of processing life is the right one and anyone else’s is plain wrong.
I refuse to let a disabling, degenerative disease force me out of knowing who you are.
You are an incredible spirit. You are kind and sweet. You are a fighter and a lover in the deepest sense of the words. Oh, I understand that there are all types of people in the world. They may not understand you. They don’t understand or communicate well with each other either. But there is something you should know about yourself. You are an expert on priorities.
You know how to inspire the things that matter most.
I’ll pray for you and we’ll turn out the light.
Please be with Taylor tonight as you always are. Let her feel your mercy and grace surrounding her and please give her rest. Amen.
Good night, Sweets. See you in the morning,