Fifteen years. That’s how long I’ve been a parent as of today.

Frankly, it has been an exhausting fifteen years. It started so auspiciously: Jesse exploded out of my womb, gnawed successfully on me for gruel for five minutes, and felt promptly asleep.

Shortly after, Jesse blossomed into her full glory.  All she needed, in order to be calm and content, was relentless 24-hour attention, along with an endless supply of unmitigated unadulterated untarnished unbounded unconditional unhinged love.  

If we failed, we got some version of this, which could go on for hours.

But if Anthony and I were present and committed, and if sleep deprivation didn’t deny us of all our base humanity, there was nothing more joyful than Jesse’s soul, shining through those eyes.

When I thumb through photos of her early years, I also see hints of the darkness that exists alongside the joy, a certain haunted look that we couldn’t name yet as we snapped away with our cameras.

We strapped her onto us, rocked her, slept with her, remained with her, and waited.  I guess we’re still waiting, though she doesn’t sleep with us anymore and she no longer fits in the baby Bjorn.

It’s all still here, the same little person who came to be in 2005 — the joy and the needs, the darkness and the light, the miserable sleep, the tics and courage, the anxiety and imagination, the derangement and pizazz, the sticky feelings, the deep intuitions about the ugly hypocrisies of humanity that inevitably lead her to the edge, the generous and accepting person who meets everyone where she finds them without judgment – and still waits for the wider world to offer her the same grace.

Last summer my brother Mark took Jesse to an enormous corporate amusement park in Northern California. They came back with this snap of her in transit on one of the roller coasters.

It’s a perfect depiction of how I imagine Jesse experiences life, every single day – in overdrive, overwhelmed by sensory inputs, trapped in a cage by terrible tics and self-loathing, in a seat by herself pummeling through a weird and scary universe, totally out of control but still hunting for the thrill that makes it all worthwhile.

* * * * *

Occasionally someone will ask me if it’s right for me to write about Jesse’s mental health journey, because it’s her story to tell, not mine. I understand, but in my shoes I also disagree.  I mean, I get her permission – though at some level, I’m sure it feels more like I insist on her permission.  But more importantly, it’s also my story.  For fifteen years, Jesse has been part of my story, as much as I’m part of hers.

Jesse is my muse.  Thanks to her, I’ve overcome deep layers of mental health stigma, and I’ve finally sought the supports I need to live a healthier life. Therapy has been life-altering and life-affirming. Mental health and disability education and advocacy have been empowering and have expanded my mindset in unexpected ways, trickling out into every aspect of my moral and political life.  I’ve discovered words and phrases like “radical acceptance” and “ableism” and “self advocacy” and “implicit stigma” and “self compassion” and “personal boundaries” and “crazy nation.”  (Fine, the last one I made up.) I’ve learned about the meaning and lack of meaning in labels.

I’ve been through a lava field of parental self-loathing and failure, and I’ve found myself coming out the other end emotionally more competent, kinder, more capable of grace, more resilient and stable, more able to ask for help when I need it. At 53, I can honestly say (without too much cringing) that I like myself, and I think I’m a pretty decent person. Definitely a better person than I was 15 years ago.

(Still grumpy, don’t worry.)

When I speak and write about Jesse’s mental health challenges, it’s not a cry for help, and I don’t think it’s disability porn. At least, I hope it’s not.  It’s a rumination to be sure, but mostly it’s become a call of gratitude. Jesse has saved my life.

Yes of course, I feel anxiety and stress about her future. She has challenges yet to overcome, and her road will be harder than it’s likely to be for a less atypical kid. Yes, I despair sometimes and act like a terrible parent.

But I can bounce back better now. I can shake off the dust and forgive myself and try again. And again and again and again, until Jesse can exhale. I’m learning to exhale beside her. I know that I have the power to model it for her, and I have to power to learn it from her. It depends on the day, which way that arrow flies. We are mirrors.

* * * * *

I know this is banal and simple, but there’s an old U2 song, called Bad, that hits me between the eyes each time I hear it. I have to dig deep not to ugly cry.  It’s become anthemic for me. It’s about heroin addiction, but like all great songs, it’s flexible. Some of the lyrics nail the space in which I live as Jesse’s parent, that desperate longing I have for her deep soul to find its way to safety.

If I could throw this lifeless lifeline to the wind
Leave this heart of clay
See you walk, walk away
Into the night
And through the rain
Into the half-light
And through the flame

If I could through myself
Set your spirit free, I’d lead your heart away
See you break, break away
Into the light
And to the day…
If I could, you know I would,
if I could, I would
Let it go
This desperation
Dislocation
Separation, condemnation
Revelation in temptation
Isolation, desolation
Let it go
And so fade away…
I’m wide awake…
I’m not sleeping.

* * * * *

Jesse expected little for her birthday today, what with her lack of active peer friendships and all the quarantining, but we did the best we could. I got her some makeup items she’s been wanting.  Nick made a treasure hunt out of clues on little bits of paper, which sent Jesse all over the house and yard until it ended in a birthday card he made for her. They were happy together. I made her donuts. Anthony sang her “happy birthday” about 20 times, announcing successive performances like rising burps.

When we asked Jesse what she wanted to do for a special outing, she answered without hesitating: go dip herself in Lake Michigan.  So we headed out to Kohler Andrae state park, her favorite spot for dipping-in-freezing-lake-water-in-early spring.

An hour later when we pulled up to the park gate, we learned that state parks are closed on Wednesdays for now.

Jesse flexed instead of fretting, this time. We discussed alternatives and quickly settled on a county park called Lion’s Den.  We drove back to the Den and spent solid time walking and rock-hopping up a stream. Jesse waded, her feet turning bright red with the cold, her face turning bright with the pleasure of fresh air and distance from humanity’s square walls.

Eventually we marched down and faced the lake. Jesse waded straight in, steeled herself, and dunked under. The water temperature is somewhere in the low 40’s at best. Dauntless.

That’s me screeching happily behind the camera.  You can hear her brother Nick muttering hopelessly in the background, “This is not a good idea.”

Maybe Nick’s right, but Jesse was happy. He waded in next.

* * * * *

When you’re fifteen, it’s so hard to know that people care about you. You want it and you don’t want it, all at the same time. You still need your parents so badly – especially when mental health challenges make life complicated – but you need your independence just as badly. Love starts to be bound up with sexuality, and it gets so weird and icky. It’s all such a mess.

It’s just as messy from my end, with Jesse. I don’t know how much she needs me until I’ve discovered that I’ve nosed in too deep or stayed too far away, after the fact.  Sometimes she’s totally dependent on me for the most basic things. Sometimes, I could be dead and it wouldn’t matter. She always surprises me.

Today at Lion’s Den, I grabbed my phone to take a video of my sweet, messy little maiden as she strolled down the trail ahead of me.  She took off when she saw I was filming, and I realized I was witnessing a metaphor.

There she goes, my child turning into an adult.  She knows these trails like her own house, we’ve been here so many times.  I’ve taught her everything I can about trail safety, and she’s learned even more on her own.  She’s safe as she disappears around the bend. She’ll be fine until I see her again.  She’ll come back if she needs me, if she can.

My heart squeezed tight as I put away my phone.

* * * * *

Having learned to ask for help, I am now shameless.  I sent out a call to many friends a couple days ago, asking them to reach out to Jesse for her birthday. And boy did they come through. Videos, cards, songs (one even in costume), poems, posters, gifts, [socially distanced] visitations, emails, calls. It rolled in all day long.

I don’t think Jesse understands what hit her, but she was happier than I’ve seen her in a very long time.  I know she doesn’t believe she deserves anything good, and she’d probably say it’s just because I asked people to reach out to her.  But that’s palpably false.  Someday I’ll tell her plain, when she’s ready.  What happened today is called love.