Dear Family and Friends,
Some of you may have noticed that Chloe is not always her happy self these days. I will do my best to tell you what we are experiencing and what we have figured out so far. We hope that being open about our struggles can help everyone better understand what Chloe, and we as a family are going though, and we kindly ask that you withhold judgment because we are simply doing the very best we can. We are learning more each day, and seeking guidance from Heavenly Father in all that we do. Our very best may not be as good as your very best, but we are trying and we aren't giving up.
Chloe has had some health struggles in the past while managing a rare genetic disorder called hemihypertrophy which causes the left side of her body to grow faster than the right side. When we began to learn more about this disorder we were scared, we didn't know what the future would hold but we have witnessed big and small miracles and it has all worked out. She is dealing with it just fine. Now we have a new health struggle and we don't know what the future will hold, but we are witnessing miracles and we know that eventually it will all work out. This quote from Conference has become my daily mantra the moment I begin to feel a glimmer of doubt...
It will.
Around 5th grade we noticed that Chloe was beginning to lose her sparkle. She wasn't her usual happy-go-lucky self. Our once very social child who had lots of friends was suddenly becoming a loner. She would come home from school with worries about schoolwork and would commonly say that she had a terrible feeling like something bad was going to happen. She became afraid to sleep at night. We did what most parents would do and tried to reassure her fears, and teach her the normal coping skills parents usually teach their children. Only they didn't work. Not even a little bit. I thought it was so strange.
At this point she hadn't really opened up to us with details about how she was feeling, but we now know some of the things that started happening within her sweet little mind. She would see a glimpse of something she perceived as disturbing or scary on a television commercial or a movie clip and would be constantly haunted by it. It would replay over and over in her mind, preventing her from concentrating at school or sleeping well at night. She was having horrible nightmares that her family was being slaughtered or burned right in front of her eyes and couldn't sleep at night because she was plagued with fears, haunting images and worries that harm would come to her or her family. She constantly worried about the ones she loved dying, and about natural disasters. We had no idea that our little 11 year old was carrying all of this around on her head and in her heart on a daily basis. The fact that she still managed to remain normal and even happy and smiley for the most part is a testament to her spirit and amazes me.
By the next year her symptoms had progressively gotten worse... she was constantly obsessing and worrying and she began to have physical symptoms as a result. Because she wasn't open with us about what was going on inside her head, or maybe didn't even really know how to articulate it herself, we just chalked it up to being a whiny kid or a ploy for attention. We aren't the kind of parents that want to baby our kids, we want them to develop life skills and push through hard things so we treated her that way. We didn't know that she was constantly living in a state of fear and panic, worrying that her family would be hurt while she was at school, worrying about schoolwork and her peers, feeling like people were always staring at her and judging her. No wonder she had stomach aches and headaches! Her emotional state began to take a further toll on her body.
She would get into these weird funks where she would completely shut down and could barely look at you or speak more than one word sentences. She was moody and the kids were always asking me why Chloe hated them so much. She began to have panic attacks and as I really began to zero in on her symptoms, I began to learn more about anxiety in children. I read everything I could about it, we continued to pray with Chloe about it, we read books every night and learned coping skills and tools. We learned to recognize that feeling of dread, that it was anxiety and learned what to do.
Although I have a testimony that prayer is a powerful resource and tool, it eventually became clear to everyone that what Chloe was dealing with was going to take more than prayers, advice and reading books to conquer. Everything finally led up to a total emotional breakdown, and after constant lovingly prodding, asking questions and working with Chloe to verbalize what was going on, we realized the true extent of her suffering.
I found a great therapist who met with Chloe weekly using Cognitive and Diabolical Behavioral Therapy, and she seemed to be making great progress. The therapist diagnosed her with Anxiety/Panic Disorder with Obsessive Compulsive Disorder
tendencies,. I think finally talking about it and getting everything off of her chest and out in the open was a huge burden lifted off of her shoulders, and as Mom and Dad and the rest of the family learned more about what was going on, we could better learn how to help and support her.
We started seeing less and less bad days. We found some success using natural supplements called Cataplex G, which at the time helped a lot, as well as Bach flower remedies and essential oils. At that point it wasn't full-on OCD, and we thought we had a handle on it, so much so that the therapist told us she really didn't need to see Chloe regularly anymore. For the rest of the school year if she had problems, I chalked them up to a bad sixth grade experience and thought that once Junior High began, she would start fresh and be happier. We had some tools and we thought we were doing great. "We've totally got this under control!" I thought.
Then life turned upside down: we moved, got into a car accident, began building a house, and spent four months living in a temporary state at my in-law's house. My in-laws left on a mission, we had end of the school year stress with testing and programs and activities. I think the chaos threw her back into a funk, so we began seeing the therapist again off and on throughout the summer. We didn't really know what else to do.
Junior High began and at first it looked like our hopes were coming true, Chloe loved Junior High and seemed to be doing really well. As the first term progressed, so did her OCD. It turns out, Junior High has a thousand times more triggers than elementary school. Once again, Chloe wasn't verbal about her suffering and unbeknownst to us she was plagued with fears and in a constant state of panic. Here are a few examples of what I have learned would happen:
- They would learn about earthquake safety in her class at school and that small "what if" thought would turn into full on intrusive and obsessive thoughts that there WAS going to be an earthquake and her whole family would die. She thinks about it and worries about it ALL the time.
- If her hair isn't just right before school then she feels as if everyone is judging her and thinks she is hideous.
- A dumb boy at school told her that she was ugly and that became an obsessive, intrusive thought that she was so hideous she couldn't even look at herself in a mirror or walk the halls without worrying about it.
- She heard about a kidnapping on the news and couldn't sleep without continually checking to make sure all of the doors were locked because she was sure someone was going to kidnap her or one of us.
There are so many more.
She would try to put on a happy face each day, then spend the night crying into her pillow. We have since learned that her stomach would hurt so badly in the morning after a night of worrying and terror that she couldn't eat, so she would go to school on an empty stomach. Then she would skip lunch as well because she couldn't handle the crowds in the cafeteria, so she would hide in the library. She would come home completely hangry and would argue with her siblings. At school she was so exhausted from worrying that she had a hard time with school work, which would cause more stress. The usual tween girl drama that seventh grades encounter added an extra layer of complicated worrying and stress.
OCD was ruining her grades, her friendships, her family relationships, her health, the things that bring her joy such as Young Women's, dance classes and pretty much her life.
We had no idea it had gotten that bad. Home is her safe place with limited triggers so she was usually pretty happy around Mom and Dad. We could only rely on what she told us which was limited. When she had meltdowns we thought it was out of control teenaged hormones and after all, we were taking her to a therapist. Wasn't that supposed to work?
We decided to have Chloe try taking Zoloft for anxiety. We started on a low dose and it didn't help, so we increased the dose the next week...she seemed to be getting worse. We increased the dose again and it was full on panic attacks on a daily basis. I'm pretty sure the physical and emotional stress was so high that she has had some sort of breakdown.
We stopped the Zoloft and she started to feel much better. She began missing a lot of school due to the panic attacks so we tried having her take Lorazepam which is a sedative. It helped, but still didn't work that great. We finally decided to have her take a medical leave from school.
Her therapist started doing more therapy based on OCD rather than anxiety, so I turned my attention to learning more about OCD. When I knew the right questions to ask, I could finally figure out what was going on in Chloe's mind. I finally realized why all of the treatments we were trying to relieve the anxiety weren't working. They weren't working because Chloe doesn't just have OCD tendencies, she has full on OCD. The world Obsessive Compulsive Disorder is strange, new and there is so much to learn. I had no idea that so many people endure this kind of suffering, and when something doesn't work right in the brain, it misfires and causes thought distortion. I just thought people with OCD were weird and washed their hands all the time, or flicked the lights on and off three times before entering a room. There are so many facets to the world of mental illness and my compassion has deepened as I learn more about it. I particularly feel for those who suffer from shame. No one would feel ashamed if they had a virus, or diabetes, but for some reason when we have a problem with our brains we are ashamed.
Her therapist recommended that we begin seeing someone who specializes in OCD, and as I began doing more research and talked to therapists trying to find just the right treatment, I realized that her anxiety was not a result of some physical cause that could be helped by medication, her anxiety is caused by her obsessive, terrible, worrying, lying, terrifying and unrelenting misfiring of thoughts. We have to change the way she thinks in order to relieve the anxiety that is caused by the misfired thoughts.
I learned that OCD sufferers need a special kind of treatment called exposure therapy in order to have any chance of success at a normal life. There are only two therapists in our area who do that kind of treatment, only one is covered by our insurance. The soonest we could get in to see her is next week. I keep hoping someone will cancel their appointment so we can get in sooner. In the meantime, Chloe has been going through hell.
I think her little body, her emotions, her brain....they are all just exhausted and are saying, "I'm done!" I know she has probably offended many of our loved ones, friends and neighbors with her strange behavior, we hope that you understand a little better after reading this and don't take it personally.
As of this week we have to monitor her calorie intake and force her to eat pretty much every meal, she can barely leave my side, she sleeps on our bedroom floor, she gets panic attacks if we leave her alone, she either cries all the time or stares blankly and numbly half the day. It's only a few segments of precious minutes that we get to see our normal Chloe each day. She says she doesn't want to hurt herself but I'm not so sure so I don't dare leave her alone. I have contemplated checking her into a facility but she is terrified to be away from us for too long so I keep holding on until her appointment with the specialist next week.
She really wanted to go to the temple with the Young Women yesterday and I was happy she wanted to get out so I let her go. She said she had a good time, but it must have exhausted her because today she spent the day either crying or curled up into a ball staring numbly at nowhere in particular. Every normal activity comes with a price these days.
Through all of this I have been determined to sustain an unrelenting faith and determination that we will eventually figure this all out and get Chloe the help she needs. I have hung on to the comforting words of living prophets, friends and family who are doing everything they can to help. I particularly loved this quote from President Uchtdorf during last month's conference session:
"let me be clear: there is nothing noble or impressive about being cynical. Skepticism is easy—anyone can do it. It is the faithful life that requires moral strength, dedication, and courage. Those who hold fast to faith are far more impressive than those who give in to doubt when mysterious questions or concerns arise."
John and I have been determined to hold fast to faith. I will admit though, that although my faith has not wavered, today my fortitude did, and I felt very very tired as I sat in between THREE struggling girls: Clara with a recently broken elbow who needs my constant care, four year old Sicily who is still adjusting to the move and won't leave my side for a second, and Chloe, caught in the grips of a silent mental illness who needs my constant care. All the while, I myself am struggling with some intense health problems which I will try to update everyone about soon. Today I had to repeatedly remind myself that I'm not in this alone, and that the Lord will qualify John and me.
Chloe and I read this quote every day, sometimes I read it multiple times a day:
I testify that although it has been difficult, we have seen the hand of the Lord in our lives, we have felt angels around us bearing us up, and through the enabling power of the Atonement we have been enabled to do things we couldn't do on our own. My limited understanding of mental illness would have never allowed me to figure out this much this fast without divine help. I trust His process, and I know that growth and blessings come from the hardest of trials. We have braved hard trials before and come out stronger and wiser, and we will do the same with our current trials. And after we catch our breath, we will turn around and use that strength and wisdom and experience to bless others.
Your questions are the same as ours, "What can we do for Chloe?" "How should we treat her?" "What should we say to her?" Other than sending your prayers our way and trying to have compassion when she acts strangely, we just don't know. I think she likes notes of encouragement, and we are all pretty open so it's okay to say "Sorry you aren't feeling well. We love you. You can do this." I think she could really benefit from extending her support circle.
For those who want to learn more about OCD and what Chloe is dealing with, I'm pasting a link that explains it better than I could:
KIDS HEALTH.
John or I will keep everyone posted on the progress we make. I'm sure my foray into home schooling is going to be an entertaining adventure for everyone to enjoy!
Thank you for your love and support, we love you.
