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Gillian The Unicorn
11/3/2016 Latest post:
Where to begin? I think that most anyone who reads this will already know something of our struggles with Gillian over the years. She has struggled with mood disorders, and has received various diagnoses throughout the years ranging from the relatively innocuous (she is having a reaction to sugar), to the more severe (pediatric bipolar). In the mix of labels was also PDD-NOS which puts her on the autism spectrum, NOS standing for Not Otherwise Specified.
Gillian has had good days and not-so-good days, and sometimes just plain terrible, rotten, no good very bad days. Some weeks, months, and even years, far better than others. There have been days that she has desperately wanted to die, and days where she has been filled with such joy that she unabashedly jumped up and down on a trampoline in a friend's backyard, in her homecoming dress, prior to leaving for the dance. We have, and always will, love her through all of the highs and lows that she experiences, though our hearts break repeatedly during the lows.
About a year and a half ago, we started noticing subtle changes for Gillian, in terms of her anxiety and propensity for depression. We were of the belief that it was a medication issue, and one of her prescriptions just needed tweaking. As the months passed, the tweaking didn't seem to be making a difference, and in fact, she seemed to be deteriorating in terms of her moods and mental health. -Still, we continued on, living our lives as a family, rallying around Gillian as she has needed us to.
What we didn't realize, was that Gillian had been frequenting "Pro Ana" websites, for people who were pro anorexia. Over the many months, Gillian was connecting with the things that she read on those websites, and as the days passed, she unwittingly committed herself to a very sad and lonely path. She started restricting her eating, which she did so subtly at first, we didn't even notice. Then we thought that she was just getting picky about things. After that, she started talking about being a vegetarian. She wore baggy clothes, so we didn't see much difference...
Meanwhile, her medications had clearly lost their efficacy, something that we would later learn happens when the body is malnourished. Her world became smaller and smaller, as she struggled with attending school, being out in public, attending music concerts (to include her favorite artists that we had tickets to, and she desperately wanted to attend), just going out for ice cream, or a walk in the park. Before we knew it, she was spending the bulk of her time in her room with her door locked. She was crying every day, multiple times a day... she was sleeping in John's and my room, at the foot of our bed (we bought a futon, and placed it at the foot of her bed to sleep on, when it became apparent that she was emotionally incapable of sleeping in her own room).
I took her out to visit family in Seattle, something that she very much wanted to do, and she couldn't bring herself to go anywhere, or to interact with family. She wanted to be there, but it was all too overwhelming for her...
I took her out to Colorado to visit more family out there, and again, she spent much of her time hiding in her cousin's room, struggling to interact and keep up a happy face...
Every minute of every hour of every day was difficult for her, and she just seemed to be getting worse with every passing day.
When her doctor needed to get her weight for yet another medication change, we realized that she was 113 pounds, down from 135 less than 4 months prior. It was shocking. There aren't words.
Then John and I really started paying attention to her food intake. I started searching for residential treatment facilities. It took two months of fighting with our insurance company, compiling and faxing letters and records of Gillian's mental health history from everyone who has ever seen her, and threatening to file both a law suit, and a complaint with the Insurance Commission, before I finally got the approval needed for Gillian to admitted. By that point, Gillian was down to 96 pounds.
-As I type this, I feel a huge weight on my chest, and I find it difficult to breathe...
Our baby, our girl who is one of the bright lights in our lives, has anorexia. It isn't some white girl cliche. Our daughter hates herself for reasons that we cannot understand. It's crushing. We take it with us everywhere. There is no escape from it. Not for her, and not for us.
We can barely envision what each day will look like, much less the holidays. She is in a completely different state, living away from us, and calling us each night for no more than 20 minutes, with tears in her voice. We struggle to say the right things, to be both sympathetic and upbeat for her, and worrying that we are failing miserably. After the nightly call, we analyze how she sounds, what she said, what she didn't say... it's all consuming.
John and I alternate weekends visiting Gillian in Illinois, so that our youngest daughter Marina can have some sense of normalcy, rather than having every weekend revolve around her sister's illness. Marina is heartbroken about Gillian, and is afraid that her sister may never come home again. Danielle is equally lost in her own uncertainty about Gillian's future and her desperate hope for her sister to ultimately be okay while she attends her college classes and work...
So that's where we are right now... I wish that I had an eloquent way to tie up this first post about our journey with Gillian, but I guess that I don't... just that things are what they are, and we are doing our best to get through the rough moments, and truly revel in those good moments when they come.