“I just want to die.”
It was 8am and we’d heard Taylor say those words nearly on repeat since 5am, when I’d jumped out of bed with my eyes still closed and stumbled down the hallway and into the kids bathroom to relieve my 8 year-old Makenzie, who was trying to pull a screaming, thrashing Taylor down from the small, open window she was attempting to fit through. It is the only upstairs window we have not hammered nails in to keep from opening more than a couple inches so that Taylor won’t be able to jump out. Now I’m realizing the opening may be just big enough for her to fit through, so we’ll need to nail that one shut too.
I pull Taylor into bed with me as I’m still half asleep and keep my arm across her chest and a hand clenched on her upper arm so I’ll be able to feel if she suddenly tries to get up and run for a window again. That happens three more times in the next half hour between her anxiety-ridden stream of, “I just can’t live anymore. I can’t do it” and “I hate myself and everyone else hates me. No one loves me.” It’s sad, but I’m so jaded by hearing this kind of talk from her for 3 years now, I can only mumble, “you know we love you, Tay” through my half asleep haze.
We’ve made it to 10am now, and when Taylor was pulled away from the window again, she resorted to attempting to stab herself in the stomach with a pencil. When we took the pencil, she found another and started poking it into her neck. It’s been a few months since she has tried to use objects to harm herself (usually she looks for a kitchen knife, which we keep hidden) so we were surprised and obviously discouraged to see this happen. Time to hide all the pencils in the house too.
By 11am, Taylor was screaming that she didn’t want to go to church and ran from the house. After a few minutes, Blake went out in the rain to find her in her usual spot, around the corner of our neighbors house, huddled in a ball on the ground up against their fence. He was able to convince her to return home with him, mostly because the rain was too uncomfortable to sit in. I’m already dreading the summer months, when the weather doesn’t bother her so much.
It’s just after noon now, and we’re loading all 4 kids into the car to get to church and Blake and I are dreading it and already feeling defeated. Makenzie has approached me multiple times throughout the morning to whisper in my ear “I feel scared for Taylor. Is Taylor going to be okay?” Makenzie can sense how bad things are in Taylor’s head right now…it’s no wonder she has been complaining of chest pains throughout the day. Hearing your big sister beg to die all day would give any child anxiety. I try not to let the pain and fear show in my face and hug Makenzie, doing my best to reassure her that Taylor will be okay (will she be, though?). I make a mental note to mention the chest pains to Makenzie’s therapist this week.
It’s 12:30 now and we’re settled safely in a pew at church. The first 20 minutes are smooth, as Taylor has relented to wear her headphones to block out the noise and is reading her new book. She has not looked up to get overwhelmed by her surroundings. Yet. I’m grateful for the few minutes of relief. It doesn’t take long for her to lose interest in her book (she can never do any activity for long before she loses focus…what are we taking ADHD meds for again???). She’s also tired of wearing her headphones so she has taken them off and is now more sensitive to her surroundings (aka a chapel filled with 600 members of our church). That’s when the attempts to run begin.
She’s getting bigger now (she’ll be 11 by the end of the month) and it’s getting harder for me to restrain her. I get a grip on her and glance down the row at Blake, who has been restraining Jackson, our 5 year old son who is also on the autism spectrum, for the majority of the meeting. Jackson also gets overwhelmed by the crowds of people that come with attending church (or just going out in public in general…shopping, restaurants, parks, play areas…it is unsafe for our family to go anywhere without 2 adults present at all times).
After a while, both Taylor and Jackson are yelling, have lost it completely, and need to be taken out into the hallway before they make even more of a scene. Makenzie looks up from reading the church magazine “The Friend” on my phone, where she is usually able to escape and tune out the noise of her siblings, long enough to shoot me a panicked look and say “I feel scared for Taylor.” I manage to say “It will be okay” before I leave her behind as I go out into the hallway to see if Blake needs my help. My 4 year old Hailey trails behind, not wanting to be deserted.
I find them in the corner of the building, where Blake is calmly holding onto Taylor’s arm to keep her from leaving the building while Taylor laughingly encourages Jackson to “headbutt daddy” so she can escape. Her anxiety is so high, she becomes hysterical and will try anything to flee the situation. I know this, but it’s still hard not to feel upset when she’s laughing and violent towards her dad, who is just trying to keep her safe.
Sacrament meeting finally ends after what feels like hours and we weave through the throngs of families in the hallways to drop off our kids at their various primary classes. Makenzie is so upset at this point (her big sister and best friend has been begging to die for over 8 hours now), so I ask Taylor to hug her and, as she does, I hear her whisper in Makenzie’s ear “I love you.” That’s not something Taylor says often, so it gets Makenzie crying in earnest and I position her in front of me to protect her from her peers a few feet away, because I know she doesn’t want them to see her cry. I’m trying to hold back tears myself at this point.
After she’s calm, I walk her to class, then take 4 year old Hailey to her class, which she doesn’t want to go to and is acting clingy to me…again, no surprise given the chaotic and insecure feeling at home with a suicidal big sister. I hug her extra tight, then pass her off to her teacher and leave because I know they’ll take good care of her and I just can’t see her tears too.
I find Blake in the hallway. He has dropped off both Jackson and Taylor to their primary teachers who have been specifically called to their classes because they are so good at taking care of special needs kids. Jackson’s teacher has to literally hold him on his lap and show him stormtrooper videos on his phone during singing time to keep him from leaving the building. Taylor’s teachers have had loved ones who have been suicidal and know how to make her feel safe and loved. It gives Blake and I some peace of mind knowing they are safe and we can attend an hour of Sunday school without too much worry (will we ever not worry?).
I settle into my seat next to Blake, just glad to have my hands free and a moment to breathe. The discussion focuses on parenting and I apply to myself what I can (parent with love), but many of the examples shared are difficult to apply to our unique parenting situation, so I find myself tuning much of it out in order to protect my aching heart.
Church finally ends, we pick up the kids and get everyone in the car. Jackson screams his guts out for most of the car ride home because he needs to go potty, but only wants to “pee on the wall” and is upset that we have refused to let him. Taylor says “I’m proud of myself for staying for all of church” and Blake and I exchange a weak smile. I guess it was all worth it?
When we get home, we hand out a few snacks to the kids and give them iPads to watch while Blake and I change out of our church clothes, wolf down some food, watch TV for only a couple of minutes before we both fall asleep on the couches out of sheer physical and emotional exhaustion. It’s nearly 3 hours later that I wake up. I go upstairs to check on the kids, but I’m not worried about them…if there is anything that can keep our suicidal autistic daughter alive, it is screen time. Sure enough, they have all been eating cheez-its and watching Netflix Kids the whole time. I throw together some mac and cheese for dinner and get everyone to bed by 8pm…but not before another 30 minutes of calming Taylor as she begs to die.
It’s almost 9pm now and Blake and I are so emotionally spent, we don’t even need to talk, we understand each other completely with just a look. Time to eat and watch shows together to distract ourselves from the fact that, even though Taylor has completed 44 PrTMS treatment sessions, we are still having days like this. Days that suck the life out of all of us. Days where you just don’t know how you’ll keep her alive. Where you can’t help wondering if you will be that parent that has to bury their child. All we can do is pray, sleep, and see what tomorrow brings.