It was the Thursday after St. Patrick’s Day and the first week of homeschooling since we’d been put on quarantine lockdown in our homes due to the coronavirus. The missionaries from our church had reached out to ask if they could share a brief spiritual message with us via FaceTime that evening and we resignedly accepted. And it went exactly as Blake and I expected. Well, at first anyway.
As we sat on the couch and huddled around the iPad, Jackson became restless and overwhelmed and therefore resorted to hitting me and Blake and jumping off the back of the couch onto our backs (PSA: it hurts to have a 6 year old jump unannounced onto your back). I finally got him secured on my lap and had his arms restrained so I wouldn’t get punched in the face. Taylor, of course, had been rocking and moaning in the fetal position in the corner of the room, refusing to sit within sight of the missionaries. That was a little better than I’d expected… I was ready to chase her from the room after she ran out screaming, but it didn’t happen… winning, right? I strained to hear the message the missionaries were sharing and smiled encouragingly. The poor guys.. I hadn’t been able to hear a word the young, sweet Elders have said.
As the 15 minute message finally comes to a close, we end with a prayer, turn off the iPad, and sigh. Just another “spiritual moment” in the Hagen household. Taylor starts her usual rolling and thrashing around on the floor, screaming that she feels weird. Blake and I look at each other knowingly (here we go again… more of the usual overwhelm and anxiety that we see daily) but then Taylor gets calmer for a moment and says something that stops us both in our tracks.
“I just feel weird. But not in the way I usually feel. I’ve never felt like this before. I feel like the Holy Ghost is there telling me I can do it, I can fight it and that I am strong and brave. Then there is something else telling me I am the worst person ever and that I just need to die. But I know Heavenly Father is helping me, too.”
Blake and I exchange a look and I’m fighting back tears and hardly knowing how to respond. In the 3 years that Taylor has talked about the darkness she is filled with and the desperation to die that she feels, she has never mentioned the Holy Ghost or Heavenly Father. And here she is, feeling confirmation in the midst of her dark struggle, that He is real and wants to help her. I may not have heard a word of the missionaries’ message, but the Spirit they brought was felt in our home that night by the one person who needed it most. Blake and I count ourselves blessed to have witnessed that sacred moment when we knew Taylor felt the spirit for probably the first time in her life.
Fast forward to the next day, Friday. We’d gotten into the habit of taking family walks every evening when Blake was done working. Taylor and Makenzie ride their scooters while Jackson and Hailey run or ride in a wagon Blake pulls. It’s good bonding time and usually gets them worn out before bed (even if we do only go for less than 20 minutes). We’d gotten about 5 houses away from our house when Jackson announced loudly (he doesn’t seem to have another volume) that he needed to go pee and he was going to pee on our neighbors house. He then went straight towards the front of their house and grabbed the top of his pants. Certain he would follow through, Blake managed to grab him and tried to convince him that he could go potty in the bathroom at home and peeing on houses is not appropriate.
As this was all unfolding, Taylor found it hilarious (it was pretty funny) and laughed so hard that she peed her pants. This happens probably once a month with her, so no one was really surprised by it. Unfortunately, Taylor became upset. She thought she had ruined our family walk (though no one had said anything to that effect) and took off on her scooter, heading towards the main road just outside our neighborhood. I took off after her on foot, knowing it would be a while before I would catch up to her and praying she would stay on the sidewalk and within my sight.
As she got to the main road, I was relieved to see that she threw down her scooter and began running… now I might have a chance to catch up. She was screaming this whole time, “Somebody kill me! I need to die! I need to die!” Then she darted into the road and started weaving back and forth in a section of the road where it curved (so oncoming cars going 35 mph would not see her until they were very close to her). Just then, Blake drove up slowly in our minivan (having left our 8 year old Makenzie in charge of Jackson and Hailey at home) and parked the car in the middle turn lane, turning on the hazard lights to alert oncoming traffic. Thankfully, social distancing meant that most people were not out driving at this time, as they normally would be during rush hour. Blake got out of the car and slowly approached Taylor in the road while I approached from the sidewalk. As we closed in on her, talking softly, almost as if approaching a wild animal, a father walked by with his 2 children. Blake nodded at him, though he wasn’t anyone I recognized, and, as Taylor continued to scream and we finally caught her and I was wrestling her into the backseat of the car, the man called out, “If I didn’t know better, I’d think you were kidnapping her.”
I couldn’t completely tell if he was joking, and in that moment, I didn’t care. Go ahead and call the police, dude. They already have our family picture in their database with an explanation that 2 of our kids have autism and that we should be called if they were ever found alone. It had been my idea just a few months previous to call the police and give them some information on our family as I worried what might happen if a police officer without the backstory ever saw my hispanic husband chasing a preteen white girl down the street as she screams that she wants to die… doesn’t look good, does it? Especially if you have no idea that he is her daddy and she is suicidal and in the process of trying to self harm. (I would find out later from Blake that the man walking past was Jackson’s soccer coach… someone I had never met because I was always at home managing Taylor during Jackson’s soccer games. I guess he HAD only been joking).
Anyway… once we are in the minivan, Taylor refuses to sit down (which is fine since she is covered in urine), but I still can’t loosen my grip on her arm as she is fighting me pretty hard to get out of the car. We stand together in the back of the car as Blake drives us home and it takes both of us to pull her out of the car once we get there because she knows she will have to take a shower now and she hates showers SO much. Just like she hates getting dressed, brushing her teeth, eating healthy food… it’s all sensory overload to her and a signature part of her autism… but it makes for some looooong days just trying to get her to take care of herself independently (she still requires step by step assistance at age 11). As Blake and I drag her upstairs, I glance at the couch to do a quick headcount: one, two, three. Makenzie, Jackson, Hailey. Everyone made it back home safely and they are now watching Curious George and tuning out Taylor’s screams for them to save her from her mean parents who are trying to make her take a shower.
Blake helps me get her into our master bathroom (the only place she will relent to taking a shower) then leaves me to deal with her so we can maintain some semblance of privacy. I start to strip off her clothes as she screams at me and fights tooth and nail to keep her clothes on. I’m definitely getting urine on my hands and clothes, but I persist and finally push her into the shower and close the glass door and lean against it so she can’t get out. No amount of reasoning with her would have worked at this point, so I didn’t bother trying, I only tried to remain calm and let her know each thing I was doing so she wouldn’t be surprised by anything.
She is now banging on the glass door of the shower so hard that I’m worried she will break it so I have to keep opening it and telling her to stop. She just stands in the running water, refusing to wash herself. I wipe the sweat from my brow and take some deep breaths, trying to calm my racing heart and tune out her angry screams. I have gotten better at tuning out mentally for a moment (to maintain my own sanity) since actually excusing myself to another room to calm down is impossible.
Fear, frustration, heartache, anger… it’s all there, but the overwhelming feeling I’m always left with is a deep and heavy sadness. It’s hard to shake. It feels like it’s with me constantly, weighing me down. It’s why those brief moments of reprieve, like knowing she has felt the Spirit for maybe the first time ever, feel like groundbreaking events, like the highest of highs… because we know it will always be followed swiftly with another debilitating low. Another low that makes us wonder, will it always be like this? Will no medication or therapy get her to a place where she doesn’t want to end her life? As her parents, it’s like being on a roller coaster, except we’re blindfolded, so we never know when the next high or low will hit. We’re just along for the ride, hoping in some small way to help her learn to manage what she’s feeling and to just keep her safe.
The only thing that keeps me going is knowing that we are NOT alone and that there IS a greater plan for Taylor. That our family has a specific mission on this earth, and while I don’t understand it AT ALL, I am here for it. I am here for my daughter and will do whatever is asked of me, even if it breaks me. We are not left comfortless… the Savior knows this pain. We just have to keep putting one foot in front of the other every day… and we will. Even despite the highs and terrible lows.