Lila’s Love Bucket Challenge
This is my beautiful Lila, my daughter with the sweet smile and big brown eyes. At 11 ½, she’s creative and curious, friendly and compassionate. She loves animals and the beach, drawing and helping people with her art. And despite this huge heart of hers, Lila tells me she only feels good or happy inside about 20% of the time – like her heart is a bucket that she can’t fill with love and security because it feels like there’s a hole in the bottom where it quickly drains out. 
Lila, at Christmas, in a moment of happiness. They’re all too fleeting these days.
When she was just 4 years old, I first noticed Lila responded differently than other children to minor conflicts or the word “no” – certainly differently than her older brother did at the same age. I didn’t know what it was, but I knew she was struggling with something that she couldn’t express and that I could never understand. She had screaming fits, throwing things from her bedroom down the stairs, inconsolable until she’d accidentally hurt herself and collapse into tears. It was like she could only replace mad with pain, whether directed at herself or at me.
Hard to believe this little girl rode her scooter in front of a car not long after.
When she was 5 ½, she rode her scooter in front of a car…because she felt so terrible inside that she just wanted to die. That’s when she began psychiatric care. At 6, I made the hard choice to give her medicine – admitting she needed it was super hard, accepting that my daughter needed an antipsychotic rarely used in kids was beyond words. But within a few days, she began to feel a wider range of emotions, sometimes joy but still mostly the negatives —disappointment, sadness, shame. Still, she stopped threatening to hurt me or herself. But the truth is, that progress was short-lived because it didn’t help repair what was broken inside her – didn’t plug the hole in her heart bucket. 
Lila at 8.
Officially, Lila is diagnosed with a mood disorder, emotional disregulation, and ADHD. Borderline personality traits are also an issue. Learning-wise, she has a form of dyslexia and slow processing speed and difficulty remembering things (her working memory is not great) – these are separate from but exacerbate her mental illness. Things that you and I can just brush off, Lila can’t. Every disagreement it’s as if she feels tossed away like trash, every small conflict feels likes she’s being told to stop breathing, every “no” feels like death to her. Like flipping a switch, she goes into fight or flight... and it’s always fight, a fight for what feels like must be her life.
Lila at 7.
As Lila’s mother, I’ve done everything I can find to help – therapy, psychiatric care, educational evaluations, a special school for her learning disabilities – to make her feel loved in a lasting way. And I’ve spent tens of thousands of dollars out of pocket for her treatment – downsizing to save on rent, cutting the extras to free up money, taking on freelance jobs on top of my full-time work. I do this out of love for her and our family but also at the expense of my family – myself and my son who sacrifice alongside. I navigate all this with an ex-spouse who doesn’t understand the extent of the problem himself. And within a healthcare system that offers few real options for children with mental health issues. Over the last year, it’s become clear that Lila needs more for her wellbeing than what any weekly or twice-weekly therapy appointment can accomplish.
Lila’s love of animals, and their love of her, is one of the few things she holds onto when it comes to love and security.
I’ve found a warm, home-like residential treatment program in Montana for her – listening to their therapists and hearing parents talk about the progress their young children have made with their program is, in a word, miraculous – it gives me hope for the first time in years. But that hope comes with a huge price tag – not only to make this treatment possible for her but to help my family survive during it. While insurance may cover somewhere between a third and a half of the costs, it’s likely to do so for one to three months at most; the in-patient program is $12,600 a month on top of the $14,200 to secure a place for her – one month in advance plus the enrollment fee!
A happy moment last summer.
Average stays are 12 to 15 months, and insurance requires reauthorization every three to five days with no guarantee of coverage for any significant length of time. Plus there are costs associated with travelling to Montana every six to eights weeks for family therapy.
Long-term, I estimate my total need to be $75,000 (based on initial deposit, a 12-month stay and assuming one-third payment by insurance for the first several months, 7-8 required round trips to Montana, and an insurance coordinator to navigate the reauthorization process – I’ve mentioned that insurance companies pull no punches to wear you down to make you wanna quit, right??). I’ll be able to squeeze and save and take a loan for the remainder, estimated to be another $50,000-75,000. Right now, $14,200 will secure a bed for her this spring – as early as mid-March if what feels like a million things align in the next three weeks – and get me started for the first month to allow insurance to (hopefully) kick in, but more will be needed along the way. I have about $7,000 right now I have saved for this. As of 12/16/2021 I have increased the goal to $90,000 which is about half of what the total out of pocket will be.
New Years Day 2020, on a visit to her great grandpa, with whom she shares a love of rocks and science.
I’ve never reached out to friends or strangers for financial assistance, but the path for most kids like Lila is rough – abusive behaviors and relationships, addictions, institutionalization – and isn’t one that I can take alone or delay. Please spread this request through your networks. A little from a lot of people can do lot of good now and for years to come. I know that times are tough for many right now , and I thank you for your thoughts, prayers, and support to defray these costs and change this path – to help plug that hole in Lila’s heart bucket.
With love,
Jennifer
Below... 1. a drawing Lila made to put in food distribution bags given at thanksgiving to families in need. Her own idea; she didn’t even want to sign the artwork. 2. A butterfly landed on Lila’s finger and stayed there. I like to think nature’s creatures come to her because they feel her soul. 3. Washing our dog! 4. A headband/head crown Lila made after Christmas this past year. I used this photo for her file for residential treatment. It captured her... creative, beautiful, brown eyes and expression trying to emit happiness, but not quite able to push back the feelings inside anymore. 
