There has been something going on in my world that I haven't talked about at all. It's not new, but definitely something that I have a lot of trouble voicing because it isn't entirely mine. My daughter.
She makes me laugh so hard. She makes me want to fix so much about our screwed up world. She makes me worry about the "what ifs". She makes me learn, constantly. She makes me fight and advocate and keep pushing against every one of my own demons so I can keep fighting and advocating and pushing for hers. She makes me see everything so differently.
It's not a huge secret to anyone who knows me that I've been a single parent for 19 years and an only parent for 14 years. I don't talk about it, because if I didn't just get through the day like I'm accustomed to doing, I don't know what the alternative would be. And I don't want to sound like I'm whining about it. I need support. In a big way. And it's been lacking. Not at the fault of anyone. but I can't even begin to express how isolating it is to have a child who is different. Everyone says that they'll be there, but when you need them to step up, they're nowhere to be found. I'm tired of constantly explaining the same thing over and over to the same people who aren't there but feel that it's necessary to jump in like Rumpelstiltskin hiding behind a curtain to tell me that I'm not doing enough - when they don't even know what I'm doing - when things are at their worst. And right now, things are the worst they've ever been.
You know all those hopes and dreams we have for our kids when we're growing them inside us? You know the ones I'm talking about. She loved to wiggle around to Mozart so I hoped that she would love music as much as I do. She loved to scribble the second she was able to grip a crayon, and to me that meant that she was going to become a brilliant artist. I started teaching her how to cook at 6 and is so creative in the kitchen. I hope that she becomes an amazing chef. And she does, and she is. But then there are the other things that we all want: to grow up successfully, to be self driven and ready to face the world because they have everything they need to do so...naturally. And in all of my experience as the oldest kid in my huge family, nothing prepared me to have a child that wasn't.
The death of a wish that we have for our child before our very own eyes is one of the loneliest and most painful experiences that one will ever know. And I'm finally ready to admit out loud that I don't know what to do. Not anymore.
I'm exhausted. I'm sick of explaining to everyone what is going on. She is here but in her own world; physically present but absent - not living in every way that a parent feels that it should count. And as I have learned the hard way, nobody throws a wake or sits Shiva for your ambiguous loss. There are no well-wishers, no little black dresses, no bringers of casseroles; you can’t eulogize a child who is so amazing and just doesn't see it. I have lived every second, of every day, carrying the weight of the 500 pound label that we all have to carry for ourselves for her too. And I don't want to do it anymore. But of course I will. She's my baby. My 19 year old baby.
Things have been the same since she was a baby. The developmental delays that I thought were off but didn't think anything of because she wasn't around other children her own age until she was 2. The poop smeared on the wall. The fear of being alone in bed and going to the bathroom alone. The particular way around navigating food was always entertaining. I remember one time, when I had a behavioral therapist come to our apartment to do an evaluation, it was lunch time and she said that she wanted a peanut butter and jelly sandwich so I made it. Well I put it down and she was upset because she decided somewhere in between the words leaving her mouth and the minute it took me to put it together that she didn't want jelly on it. We told her that it was too bad, that she would need to stick to her decision - to see what she would do. Little 3 year old Reighan, ate that sandwich, but she did so in such a way that she ate everything....but the jelly. She said that she wasn't going to eat it and she was going to be damned if she would. When she said that she was done, we went over to her little table, and on the napkin was a microscopically thin piece of bread left with every bit of jelly that I had put on the sandwich. There was the taking of everything literally. "No way Jose", was always met with rage and tears because that wasn't here name. My mom had once cut my son's hair and told me that it still needed to be fixed. Later that evening after dinner, I was doing dishes and my son came to me - with 2 big scissor marks in the top of his hair - all excited because he worshiped his sister and she had "helped" him. Without skipping a beat, she continued to work on her craft project at the table and stated very plainly, "Nana said it still needed to be fixed." At daycare, she was called "The Toddler Whisperer". The younger kids all listened to her better than they did the teachers. One time, I showed up early to surprise them and she was out on the playground. She was sitting on a bouncy ball, reading a book like a teacher to a group of little kids all sitting around her in a semi circle, also sitting on bouncy balls.
There was also the inability to do anything unprompted. Tell her to put her shirt on, leave the room and come back 5 minutes later to find her sitting there with no memory that I had told her to do something. The day that she got herself dressed for preschool, but wanted everything, right down to her shoes on the wrong feet to be backwards; yes, even her socks and underwear. Then there was the preferring to be alone. Then there was the one best friend, who stopped being her friend because her parents didn't understand what it's like to have a child who's abnormal in any capacity - even though they both work in education. Then came the depression. The not eating. The not getting out of bed. The not going to school. The complete lack of self care.
I'd like to say that after countless doctors visits, evaluations, medications, counseling, meeting after meeting, phone call after phone call, email after email, that things were better. The advocating. The sobbing in the car or alone in bed with the tv blasting. But they're not. Not in any capacity. There are days. Days, not much else.
This year, she is a senior in high school. She's so brilliant that she could work for NASA. But she won't go. She won't get out of bed. When she does, it's because she's going to her friend's house or to work. She did a fundraiser for driver's ed on Facebook herself. She's doing that and is expressing excitement about having some freedom but she has so much anxiety about leaving the house that she has a full blown anxiety attack just trying to find pants to put on. But then there's the complete lack of self care. The wearing of clothes for a week with food all down the front of her shirt and not caring what she looks like. Her hair matted to her head because she won't shower. It's a constant battle in the fight to keep her functional. To get her to the point where she's going to graduate. To have a future that extends beyond our house. Last year, her lack of self care got so bad that she passed out at her desk at school and the lack of oxygen to her brain caused her to have a seizure.
To paint you a picture of what is happening recently, I'll give you the example of this past week. She hasn't showered in a week. Her friend's house smells very strongly of cat box, cigarettes, and horrible air freshener. Reighan stayed the night at her friend's house Friday evening. Then she came home and got ready for work, at McDonald's. She then went to her friend's house again and stayed a second night, and went to work again Sunday - wearing the same clothes for 2 days in a row. She walked to her friend's house again after work and I picked her up after I dropped her brother off at Boy Scouts so that she and I could hang out a bit before I went to pick him up. The second she closed my car door, I almost vomited because she smelled so bad. And when we got home, she swore that after we ate dinner that she would change and shower. She went upstairs for a bit, and after an hour went by of prompting upstairs to get in the shower, I went up to find her laying in her bed - in the same clothing. I lost it. I stood next to her bed and refused to move until she got up. She still refused. I didn't know what else to do, so I did what any person should be able to do, and I called my mother for help. Reighan talked to her for a minute, and seemed to be magically receptive to whatever she said to her, and finally got up and showered. Her bed reeked. I had to strip it and spray it down with Lysol. Going to school is starting to feel like hostage negotiations. She messages me all day long begging me to let her go home early. The problem is that she doesn't want to go, she isn't there half the time to understand her work enough to do it at home, therefore most of her classes have been changed to study halls so that she can get caught up. She needs to be there because when she's at home she won't do any work. She can't even do the bare minimum to maintain functioning as a human.
Yesterday, we had an appointment with her NP because her anxiety is so bad that she requested to see someone. I'm stuck between trying to allow my teenager autonomy over herself and having to constantly wrangle her in because she hasn't showered, eaten, taken her meds, done her homework, cleaned her room, made it to her therapy appointments on her own, gotten out of bed, etc. to a point where she is in true danger because she is incapable of "normal function". Our path forward from that is to have a meeting with her NP for med management later this month that is already scheduled. One thing that she mentioned as a treatment option that - didn't necessarily surprise me because I've heard of it and I have patients who do it, but never in a million years thought it was going to be suggested with "my baby" in mind - was ECT. I'm not saying that I'm considering it, I definitely don't know enough about it to even begin to know if it's an option.
So here we have it. Already carrying both my 500 pound label, and hers. And here's this ton of bricks too. I dropped her off at school and the second I was headed to work I sobbed the entire 40 minute drive. My heart is broken for her. I truly do not feel like I have anything left to give.
Today we had a plan that she was going to go to school and afterwards I was going to meet her at the health center so she could get her labs done. She wouldn't get ready. I ended up taking her in an hour late. She called me all day asking to come home. at 1 she called me from the office because she said that she almost fainted in the hall. She had eaten and drank water and I honestly think that it was such a shock to her system that she was trying to take care of herself for a change that her body didn't know what to do with itself.
Trying to tell people in my family, who I should be able to rely on, who have absolutely no experience with people who are "other" are no help at all. The old fashioned philosophy doesn't apply here. There is no "making her" do anything. I would have an easier time pushing a cow sideways. She is amazing. Every good day, I am amazed. She is my "rainbow light bulb", as she so eloquently dubbed herself when she was 3.
But every bad day, just opens up a wound that keeps getting opened up to the point where I feel like I'm just throwing a box of band-aids into the Grand Canyon and foolishly hoping that it'll work for now and stop the bleeding. Every wish that I have for her dead at the bottom of it.
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