The reality is that no one’s life is a straight line. None of us has a life that could even be compared to those boats that go around in a circle in the Kiddie Land portion of the amusement park. Most people live one of three ways, either on a wooden roller coaster with some ups, downs and sharp corners; or they are on that thing that you go up and up and up and up on, only to end up dropping back down at a speed to make your stomach jump up past your throat and out your ears. The last one is they just sit on a bench and watch everyone else. Best way I can describe our lives, mine and Pickles, is something like those extreme roller coasters. You know, the ones you have to sign a liability waiver for before they even let you past the “must be this tall to ride” sign.
It’s been almost one year since I drove my little girl from one side of Denver to the other, from the hospital to a residential treatment center. It will be a year this coming Thursday, that after being home only a week from the acute psych unit at Children’s Hospital for the third time in less than 2 months, that my phone rang less than half hour after the start of the school day asking me to please come get my kiddo. A year since I walked out the door of the school and my, then 6-year-old, asked to please go back to the hospital because she was scared of what she was seeing, hearing and doing. A year. A lot can happen in a year. In this past year a lot has and a lot hasn’t happened. For those who have followed this blog you know part of the story of the last year, and for anyone who has just stumbled into this adventure tale…well…here we go…
Please make sure your lap bar is secure and keeps arms inside the vehicle at all times…
Past entries have touched on how I’ve run into people saying things like…just walk away…or…she’s not really your kid…or how Pickles needs are too much to handle, let alone for a single parent to deal with. Those past entries have pretty much summed up my feelings on all that so I wont bore y’all with another tirade. You can go back and read those if you really want to. So for now, I will hold my tongue, at least about that. At least for tonight. Just file it away not much has changes there, as I fully expect it won’t. From either the haters, so to speak, or me. Although I must be honest here, my patience is wearing extremely thin.
Where to start from here… where to start…
We’re moving. We came to Denver with the greatest of hope, and with a tremendous amount of belief that the resources here would be, had to be, better than the nothing that existed in Idaho. Sure, there were other circumstances that gave me the added push to get out of Idaho Falls, but bottom line was had a residential center become the only safe option back up there it would have meant at a minimum over tow to three hours away and I won’t….I won’t do that when it’s not a last resort. And, to be honest I wouldn’t have done it AT ALL when she was only 5 or 6 years old. Regardless the level of Pickles aggression or violent outbursts I wouldn’t have done it. Even with her just minutes away now, I still question my decision to have her away from home every night before I drift off to sleep and its the first thought when I wake up.
See the core issue behind this change in the address of our amusement park is that Pickles isn’t home…still. Sure she has made progress, just not enough, and this is in no way acceptable. Pickles hasn’t made progress and so “we” haven’t made progress. Between her not being home and my sense of feeling daily like I’m somehow abandoning her and the way that all swirls around me and sends me into a funk of my own, we’ve been living on the verge of falling clean out of our roller coaster car. And since it’s just the two of us, we’re all we have to keep us both in our seats. That’s been getting harder and harder to do and it’s taken a huge toll on both our spirits.
Ok, that’s not entirely true. In a few very important ways we have, I have made some progress, although progress may not be the right word to describe what I have come to understand and accept. What I’ve made progress in is truly grasping what all this means. Yeah, yeah. I knew before what the nuts and bolts of having a child with a significant mental illness meant. (Like there’s such a thing as a child with an insignificant mental illness.) The emergency room visits, the meds, the side effects of the meds, the stigma that envelops the very words; mental illness, schizoaffective, psychosis, and…and…and…
I knew all that. I knew it from the look of horror on the faces of teachers, pediatricians, clergy, co-workers, casual acquaintances, friends, some family members, strangers I felt it my responsibility to educate, all those looks brought it home. I knew it, I felt it to my core when people would take a step back away from my beautiful little girl. Suddenly afraid of that 45 degree turn the ride just took.
What I didn’t know, but have learned in the last year is what all this does to the people standing in line for the ride. They get up there, right up to the front of the line but when it comes time to sign that waiver of liability they get a case of the nervous stomachs and make a mad dash for the exit ramp and the safety of the Merry-Go-Round. Now, let me be clear before my phone blows up, my Facebook page crashes or anyone stops speaking to me, again, over that last comment. Not everyone has gone running. The best of souls, those people who look at Pickles and can see even a glimmer of what I see; a little girl who is smart, charming, endearing, and full of love beyond what 99% of the rest of the world will ever know, those people are still there on the platform ready to jump on when we slow down enough. And those who have headed for other rides…
It’s all good. Really. I mean it. It’s cool. I wish you only the best. Lots of warm fuzzies and here…take a giant stuffed giraffe home with you as a prize for knocking over all the empty milk bottles with the unevenly weighted baseball.
I can’t and won’t fault those folks. It’s the hardest thing in the world to see any child suffer, to see any child terrified of their own mind, to see any child bright and brilliant and engaging one day and then dark, dulled and withdrawn only a few days later. To have her hugging and giggling and then flailing about and screaming, it’s horrible to watch. Trust me, I get it. It sucks. Big time. Every time it happens I want to toss my cookies, curl up in a ball and sob until I waste away.
Yeah, so I don’t fault those people who have pulled away, especially over this past year as Pickles has come close to being able to transition home only to have another regression. A person’s heart can, after all, only handle so many G Forces pushing on them as they bank through another corner and up and around another loop-da-loop.
I’m still here though. My lap bar won’t go up. Not that I’ve bothered to try to raise it mind you. I haven’t and I don’t plan to. If it meant I had to live in my car, if it means I have to take a second, a third, a fourth job handing out happy face stickers at The Wal-Mart. I’m on this ride until the clothes blow off my skeleton as we zip past an empty loading platform.
So yeah, we’re moving. To Albuquerque, New Mexico. And I’m excited beyond words, and most importantly, so is Pickles.
Pickles will transfer to a new RTC, and I’ll be resting my head in a small place while things with our home in Denver are settled. I don’t need much space without her home anyway so the tiny part is something that I’m, maybe oddly, looking forward to.
I want to be clear that I don’t have expectations of any kind. Not like I did coming here and not for greener grass. I have no expectations for Pickles other than where we’re going, she will at least have a deeper sense of happiness than she has here. Not once in a year and a half now has Pickles ever called this home. Not our house, not the city. When she is disassociated she has even asked when we are going home, but when I ask her where she means she hasn’t ever been able to answer. I get a blank stare or silence on the other end of the phone. Where we’re headed to however, is a place she has talked non stop about since we made a visit there on a pass she had a bit ago. Which means I guess I do have that one expectation, that Pickles will be able to say “home” and smile about it. That when someone asks her where she is from, she won’t stammer and stare at me or her shoes. For me, only one expectation as well I guess; that I will get back some of myself which I have lost trying to keep both of us from flying off the coaster.
The hills and corkscrews on the coaster aren’t going fast enough to keep her demons at bay. So while moving the amusement park isn’t going to make them disappear, maybe…just maybe the sounds of a crowd laughing and enjoying their own rides under a bright southwestern sun will at the very least challenge the shrieking of those demons for her, and shine on the two of us as we hold our arms up and crest that next rattley hill.
Albuquerque here we come… and for those who we have lost along the way this past year or so because Pickles didn’t “get better”, or for those who may, from the line to get on the ride, want to tell me what is the best car to sit in, know that I am, have been and will be on this ride 24/7 and 365. That means I’ve learned that the particular car you’re pointing to has gum on the seats and something gross and sticky on the lap bar.
You’re going to have to just trust me on this one.