Why do I wake at 11:00 at night. It doesn’t matter when I fall asleep I will wake at 11:00. Last night I woke after an 8 minute dream about my ex not being able to get a baby somewhere but he was in the ocean. Then he was an octopus.
Between 11:00 and morning is when things happen for me. I’m trained to be someone who is alert between 11:00 and the next day. Years of being in the hospital with my daughter made me feel like being up at night is what we do. It’s what nurses do, not what we do. Someone comes in like every 30 minutes to check vitals. Someone comes in to clean or move or chart something. Someone comes in and turns lights on and off and check drips and buttons and flow rates on machines. You can’t sleep when someone comes in. You can’t sleep when upright in a chair next to machines keeping a child alive. You can’t sleep when if you do she could die. Then you missed the alive time.
I am chosen. That’s what some say. That a higher power picked me for my daughter with special needs. In an imaginary creative moment I can see this and feel this but in my reality I got pregnant and dna did things it does and with that comes genetic makeup of a child with extra love to offer. Yet extra medical needs from too much of a chromosome. It was science. So was I picked or is it just the way it is? Do these people say this to make themselves feel better for me? Do they assume I need to feel like I was chosen for some special assignment? That I had some special powers to be able to handle extra things? Do they say it because what else do you say when what you might feel is pity? Do they say it just to say it to say something? I love to guess what people are thinking as opposed to what is being said.
When I was a detassler I was chosen for special assignments. I was a good detassler. I was a crew boss. Quickly I became someone who needed to be. But I was always chosen to this silly task of being dropped off at fields by myself and doing the 100% pull rows the machine would forget. Because I was fast. And I could be alone. And get it done. Special mission detassling.
My daughter is a test of my patience and also my faith. Faith of which I don’t even really have. She tests my faith by making me sometimes feel I have faith. She gives me a little hope that I was chosen. That there is that great big something out there that said. Her. Pick her. She thinks she can’t handle it but I will help her see she can. She thinks she has no patience for her but she does. She thinks can’t but she can. Pick her, she will fight for her when she can’t fight for herself. Pick her. Then I’m embraced in the wings of an angel and whisped away into a world where I am just loved and embraced by wings of angels. Like I am.
She keeps hiding things from me. Her anxious and my anxious are fueling each other. She is onto me. She knows I’m leaving on a backpack trip this weekend and it will disrupt her routine significantly. She has uncertainty of her meals and her where abouts even though I’ve said them a thousand times. A thousand times she has done something and now for 4 days it will be not the same so she is going to just keep me from going. By hiding my gear and maps. I’ve been playing this all week. In the middle of the night she gets up and puts things in closets and under beds that I need to walk 50 miles. She put my map between my piano music. My water bottles under the sink. My backpack under her bed and my boots are outside. She has declared Im not hiking I am to feed her forever.
This detachment is painful but necessary going forward. It’s part of a bigger plan she isn’t yet part of. I need her to not always wonder where I am. I need her to be ok without me. I need her to be ok with others. I need her to want to be on her own. I need her to cover herself up. It’s there. More importantly I need me to be able to let her do these things. The detachment is more for me than her. I wouldn’t be doing this if I didn’t believe she could live independently with just a little support and visits from her mom. I love her more than the words like love can describe but I do not want to live with her forever and cook her food forever. If this sounds mean it’s not. My goal is an independent woman. She can do it and I will show her she can like she has shown me so many things I didn’t think I could do, like show her things she can. And have faith.
So I wake at 11:00 at night like clockwork as of its my shift to work. I will fall back asleep. I don’t always but I do often. But I have things to check and do like a nurse coming to work for the night. Once I know all her order is in order so she can fall back asleep. She just lays down at night with things on her mind like her mother going hiking and leaving her in places she isn’t certain where the chicken nuggets will come from. She lays down and can’t sleep if the tv light is on. It’s the size of a star a light year away but as bright as the sun to her. She unplug electronics. She doesn’t like the turtle tank filter on. She doesn’t like toys left out by her sister. She can’t handle laundry not folded and put away. She can’t sleep unless her orange juice is right behind her head and ready for her when she wakes at 11:00 to hide her moms gear. She can’t sleep unless tucked in.
Oh we have tried them all, you are thinking now, all the medications and interventions we could do medically. She is 16. We have spent all her life. I’m sorry, I have spent all her life trying to figure this out. She has had 9 sleep studies. Guess how accurate a sleep study is when done on a child who doesn’t sleep for a sleep study because of the chaos and lights involved in a sleep study. We have seen pulmonologists, people who just guess she might have an obstructive airway given her disability of Down syndrome it is likely. We removed adenoids just in case. Not tonsils so she wouldn’t have extra issues with speech. I keep saying we like it wasn’t just me but maybe I mean her and I as a we. I tried once that she was itchy and we saw a skin doctor. Every sleep medicine we could. She always gets the least likely possible side effect from them. When I’m handed a pamphlet to read about medications for her I go immediately to the last lines that say least likely side effects then expect them. She once held her pee for 24 hours as a side effect. She can’t be drugged. She metabolizes different than most. Like her mother.
We make a good team. I know her so well it’s scary to imagine ever being away from her. Leaving her for a few days is more painful for me than her. She might not think this but I will cry at some point inconsolably on my trail for my kids. I will struggle to keep walking at least twice. Usually more but it is getting less. I will want to give up and go back home to make chicken nuggets and tuck her in. Who will tuck her in? She will lay there all night waiting to be properly tucked in. She is that stubborn. She may not be covered until I return. Is she thinking I won’t and she will never be covered again? I don’t know what she is thinking. That’s why I am so good for her. I love to guess what people are thinking and never actually be told. That’s why I was chosen?
I want to believe I was chosen. Who doesn’t want to be the chosen one right? Most people wouldn’t say this about raising a child with special needs but for me I feel like it’s an honor if in fact an angel with embracing wings was told to come pick me. I am wrapped in warm embraces of angel wings. They feel like my goose down sleeping bag that my daughter threw into the outside storage closet so I won’t leave her and never tuck her in again.
Detassling corn? In the middle of all of this string of thoughts I talk about being chosen to detassle corn? It’s not even a word says the red underline. Is it de-tassle? I am spelling it wrong? How on earth that even came out of my mind o will never know. I loved detassling though. I did feel honored to be dropped off and left at these fields to myself. I imagined they were islands. I would finish so quick I would have time to sometimes walk and play in the fields. Explore my island. I had the biggest crush on one of the guys that I detassled with. He was also a special mission detassler. I still have a crush on him. To this day. That’s when it was decided maybe? My higher power I doubt often said. Pick her. She can handle this. Look at her exploring this island of life.
I am thinking of all the corn rashes and the sun burn and the wet clothes dried caked muddy boots. The smell of the bus and all the open lunch boxes. The smell of my lunch box and it’s little ice pack. Why does an ice pack smells the way it does? it reminds me of when my dad came home from work as a carpenter and opened his lunch box. The smell of the purpose of life. Hard work. Being the chosen one.
Aspenleaf 