Sunday, December 26, 2010

A Christmas Miracle

That is how Mary described it last night when snow started falling and accumulating in our yard. Evidently God was listening to a little girl's prayers for a white Christmas because it has not snowed on Christmas day in Atlanta since 1882. Yes, I did say 1882.

The kids all spent some time playing out in the snow even though it was dark. And it was still snowing when they got up this morning so they have been out several times to sled down the hill on make-shift sleds. If is beautiful to see the land covered in a fresh, clean coat of white. The Christmas lights on all the neighborhood houses just add to the beauty. I am so thankful that we got to experience this little touch of beauty.

Saturday, December 11, 2010

Making Some Progress

This past week has been better in some ways and worse in others. First the good news... Mary has been really good about dealing with the whole "ghost" issue. After we got the baby monitor (best $16 I ever spent), she has slept in her own room without one of us in there every night. The first few nights she still needed me to stay in there with her until she fell asleep, but that was okay. Then yesterday after school she told me that she was going to go spend some time in her room with her birds, but if she saw anything she was going to scream and run out. She went in and spent about half an hour in there without any problems. Last night she went in there by herself willingly to find a Christmas movie on tv for us to watch while she fell asleep and then after I had come in and spent about 15 minutes in there she told me I could leave. WOW! What a difference from this time last week when she would shake with terror even thinking about going into her room by herself.

On the flip side, she is still soooo irritable!!!! The tdoc described her as agitated from within. She had even noticed that Mary is stuttering trying to get words out because of the agitation. She gets half way through a sentence and then the words she is looking for just seem to disappear. She can't pull the right one up from her "files". That only makes her more frustrated and agitated. She is still pretty restless when she sleeps, even though she says she is sleeping fine. The brush goes flying across the bathroom because she can't get her hair to do what she wants it to do, the homework gets crumpled because she is can't concentrate trying to work on it, the chairs get punched because she is frustrated with her brother, etc., etc., etc... I did finally call the pdoc yesterday. I wanted to let her know about the irritability factor and I still have some questions about school. I hope that we hear back from her soon so that we can move forward.

We are still doing research and trying to determine what the best placement is for Mary for the rest of this school year. I am cautiously optimistic about some things, but can't share any of the details yet. We are trying to be extremely careful not to convey any of this to Mary, so our hours of doing research are limited to the few hours she is in school and after she is in bed at night. She is continuing to do okay during school and seems to be enjoying the 2 classes she is in right now. I do not think she can tolerate any additional time added onto that in her current irritable state of mind though. I am continuously so touched by the care and concern that the staff and teachers shower on her. We are blessed that the school has been willing to work with us every step of the way and that the staff and teachers that she encounters every day do their best to make her feel comfortable. Even though she is not handling things well emotionally this year, it isn't any reflection on the school. I feel like they really are on our side most of the time and are willing to advocate for our daughter. I definitely don't want to burn any bridges if we do decide that for Mary's emotional stability we need to change schools.

Wednesday, December 8, 2010

Breath of Heaven

I have been hearing one of my favorite Christmas songs in a new light these days. Amy Grant's Breath of Heaven chronicles the thoughts of Mary as she was carrying our Savior. I have always thought this was a beautiful song, but lately the second verse really meets me where I am. "Do You wonder as You watch my face, if a wiser one should have had my place? But I offer all I am, for the mercy of Your plan. Help me be strong, help me be... help me!" I wonder, does God wish He had chosen a wiser mother for my daughter?

It seems like so much of parenting this child is like trying to hit a moving target. We want so badly to do the right thing, to always make the best choices and to always be wise in parenting her. But so much of the time, we are off center by leaps and bounds. What we think is a good parenting decision (You will go get the blood drawn, it has to be done, end of discussion!) could cause post traumatic stress disorder to raise it's ugly head. So we go the opposite direction (would you like it if we could switch you to a different school?) and we set her up for a personality disorder. So which is the lesser of the two evils? We can't really win here?!?

The past week has been interesting to say the least. Between itching to distraction, seeing things that are not really there, and feeling like the soda bottle is about to explode inside her head again, it has been a roller coaster. I don't know at this point what is being caused by what and keep thinking each day that maybe I should call the pdoc? But then things seem to level out and I rethink calling. Maybe it is just a bad day, a bad hour, etc.? Does the new med just need time to get into her system? Do we need to go up again on the lithium? Is my high tolerance for these behaviors getting in the way of making the call?

I did call the tdoc on Saturday to talk about the whole ghost thing from Thursday night. She was great and gave us some good ideas of ways to help Mary get "unstuck" in her head about it. Instead of letting Mary sleep in our room, she suggested that one of us sleep in her room so that she could face her fears, but know that she is not alone in dealing with it. So for the next 3 nights, I slept on her bottom bunk bed. Yesterday I asked her if getting a baby monitor for her room so she could call for us in the middle of the night if she became frightened, would make her feel safe enough without me sleeping in there all night. She agreed and after sitting with her until she fell asleep last night, she made it through the night without us in there. She is cooperating with telling her brain to "stop" when she starts thinking about it and building it up in her mind. Those are all good steps in the right direction.

However she was SUPER irritable over the weekend. I don't know if it was the anxiety caused by the whole ghost incident, whether the new meds are not strong enough (or too strong), whether it is because we switched one med for another and then switched back 5 days later, or what is going on. The irritability has gotten a little bit better as the week has gone on, but it is still there. She told me one day before school that school was going ok but she was feeling so irritable she was afraid that she was going to punch someone if they did even one little thing that was frustrating to her. The pushing and loudness of the hallways are frustrating to her as well. She looked ready to lose it when I picked her up yesterday afternoon. I offered to see if we could get her a pass to leave class a few minutes early so that she could go to her locker and be at the next classroom door when the bell rings. But she really doesn't want to stand out any more than she already does, so she doesn't want to do that.

So my thoughts today go back to that song... "Breath of Heaven, hold me together, be forever near me. Breath of Heaven, light in my darkness, pour over me your holiness, for You are Holy. Breath of Heaven."

Friday, December 3, 2010

Ghost in the Night

Wow, 3 posts in 3 days... Aren't you proud of me???

Evidently Mary had some type of dream/hallucination last night. She did not tell me about it until around 5:00 this afternoon. When she did tell me, she was very calm and did not seem bothered by it at all. She said she woke up during the night, and saw what looked like a ghost to her. She was able to describe it quite well. It looked like a person that you could see through. It was standing by her window (3 stories up). It moved and looked at her. It was mean looking. She keeps insisting she was awake, and that it was not a dream. HHHMMMMM???

She has had visual hallucinations before, but they always involved what she has decided to be her "guardian angel". But it has been a really long time since she has had any of these type of things, so long in fact, she doesn't even remember it happening before. She has also described having monsters living in her brain in the past, but this is very different. It goes back to that unreasonable fear of things you know are not real, but what if they could be. We talked about how sometimes our brains can play tricks on us when we are half asleep. She understands that, but to her it still feels very real.

She remained calm about the whole incident last night until it was time to go to bed tonight. As soon as we went into her room to get her settled, panic set in. Her eyes were wide and darting around. She was very worried about seeing it again. I ended up putting her in our room on a few blankets. Even then she did not want me to leave her alone. Every noise made her sit up and look around asking what made the noise. It took her quite a while to settle down enough to fall asleep.

The itching has continued today and after talking with the pdoc briefly we decided to switch back to the doxepin and see if that helps. If not, then I will call again on Monday. I did end up giving it to her a little bit early tonight because she was just soooo itchy. I was hoping that it would start to work quickly to stop the itching, but now I am glad that I gave it to her early for another reason. It makes her sleepy and after her problems settling in tonight, I know if I had given it to her later, she would still be struggling to fall asleep.

Tonight I am praying Psalm 4:8 on Mary's behalf... "I will lie down and sleep in peace, for you alone, O LORD, make me dwell in safety."

Thursday, December 2, 2010

Itchy, Itchy, Everywhere!

That describes Mary about now... uh-oh! I did something that I never do on Monday. I changed 2 medications at one time rather than give each medicine a few days to watch for side effects. My justification of doing 2 at a time was that one was really just a higher dose of a previous medication, just a different brand name. The other one was a swap out of one medication for a different medication, but both were in the same family and very similar. Now she is itching up a storm and is progressively getting more itchy. I have checked and checked for a rash. There is nothing there. But she is scratching so hard she is making herself bleed in spots and has bruised her skin in other places.

So... now I am left wondering... is it an allergic reaction to one of the new medicines, or is it a withdrawal from the one we swapped out? As I am thinking through all of this I remember that the reason we even started the doxepin (one we stopped so we could switch to a different one) was because when she started taking lamictal she complained that the palms of her hands were really itchy. Doxepin has some antihistamine effect as well as being an old school anti-depressant. Kind of killing two birds with one stone. I wonder if maybe that had been keeping the itching at bay all these years??? Of course that leads to another question... is it the lamictal causing the itching?? Lamictal has been known to cause SJS and one of the first signs of that is a rash. No rash, so hopefully we are okay. But I do remember the doctor specifically telling us to not do anything that would cause an itchy rash (think walking through the woods or tall grass, changing laundry soap, changing bath soap, etc.) that could then morph into SJS. Could all her scratching now cause the SJS to come into play?

I did call our family doctor and we walked through all the medications that she is on and cross referenced them all to make sure that there were no dangerous interactions. He also reassured me that unless she starts to have trouble breathing or if we see a rash develop, we don't need to take a trip to the ER. So for tonight she is safely tucked into bed and will hopefully not scratch too much during the night. I will call the pdoc in the morning to see what she thinks and would recommend.

One thing is for sure... life is NEVER boring around here!

Wednesday, December 1, 2010

Balancing Act

Life with a bipolar child can be a real balancing act. Sometimes it feels like we are walking on a high wire over shark infested waters, trying to juggle everything that life throws at us, and keep everyone on the high wire with us. I know that everyone feels that way about life at one time or another. It just seems particularly difficult to keep all the balls in the air without letting one fall to the sharks below right now.

We had a really good, but tough visit with the pdoc on Monday. None of us are really happy with the level of stability that Mary's current medications are providing. I was thinking a few days ago, that she is not terrible so if this is it, then that is okay. But we know that she can be better than this because we have seen it before. So that leads to some major medication changes, which always scares me! We are going up on the atypical antipsychotic medication. Good news on this is that we can switch to a different brand name that is extended release so we will hopefully see some of the negative side effects slowed down or eliminated. The bad news is that because it is not available in generic it is quite expensive. If we don't see real results in the way of side effects we will just switch back to the other generic brand, but we are hoping that it really does help with the side effects. We are also going to be tapering off of one of the mood stabilizers since it doesn't really seem to be working any more. There are other medications that we are switching out as well.

Another thing that we are all concerned about has to do with the side effects of the medication. Over the past 7 months, Mary has gained 25 pounds, her cholesterol is going up, and she is becoming at risk for developing diabetes if the weight gain does not slow down. Now, she has gone through a real growth spurt so part of that may well be a normal part of her age. But the elevated cholesterol is not good. And she is becoming self conscience of her weight. It is frustrating when you can't get any of your pants zipped. And it is getting expensive having to go out and replace her wardrobe every month. Now added to our list of things we need to do each and every day is alter our diet (which is not a huge thing as we don't eat lots of high fat foods anyway), and try to find some type of exercise that is fun and will get her up and moving more. She is not sedentary anyway, but we need to incorporate more movement and exercise in our daily routine. If we don't see the weight gain slow down or stop over the next month (HELLO-CHRISTMAS TIME???), then we will have to start looking at adding in yet another medication to balance out the weight gain.

All of these discussions led to the topic of school. WHAT DO WE DO???? She is so uncomfortable in her own skin right now, add in feeling so adamantly against middle school, you have a real mix for disaster. She just started back to school for a partial day yesterday. She was really nervous about what to tell all the kids who ask where she has been. We practiced some good answers that she is comfortable with and were appropriate to share with a group of kids so she would have a ready answer for anyone who asked. It is not that we are ashamed that she has been in the hospital or of why she has not been in school. But rather we want her to be sensitive to the fact that most kids don't know what to do with a friend wanting to kill themselves. She ended up doing really well and hopefully we are on the right path for now.

Unfortunately I got fussed at for introducing her to the idea of a small Christian school at this point in the process. I completely understand what the pdoc was getting at, and it was all things that I needed to hear, no matter how hard it was to sit there and listen to it. But the gravity of the situation has been weighing heavily on me. Mary's personality is such that she latches onto ideas that sound good to her and then she will accept no other alternative. She will campaign and beg and pray and plead until she gets what she wants. If she doesn't get what she wants, it sets her up to start cycling or worse start down the suicide road. Ultimately if we continue to let her control all of these situations with such a strong opinion we are setting her up to add a personality disorder to her list of diagnosis's. So how do we parent that??!!?? It makes me question everything that comes out of my mouth and every decision that we make. I guess I have to trust that my God is bigger than every mistake that I make and can redeem even my pitiful attempts at parenting this child He has given us.

So back to the question of school... we are still debating and praying about that. If we pull her out now, she wins (bad in the long term personality department) and we might be shooting ourselves in the foot financially since we would lose the opportunity to qualify for the special needs scholarship for next year and all the following years. If we leave her in, she is frustrated and miserable. How do we make the best decision for the immediate circumstances and not jeopardize her future success? How do we teach her to be part of the decision making process and be responsible for the decisions that are made without her input? She is not being demanding or ugly about her desire to go, but she is very belligerent about not going a full day to her current school. We still don't know if the Christian school will even take her. We have an appointment with the headmaster tomorrow. We have a list of questions from the pdoc and are planning to be very open and candid about our situation. And if we do decide that is the best place for her and she ends up hating it, where do we go from there?!? So many questions swirling around in my brain. This is only the very small tip of the iceberg. Again, I guess I need to remember Who my trust is in.

I am sorry that this post has gotten so very long. If you have labored through reading all of this, bravo for you. If nothing else, I am finding that writing everything out on here helps me process things more clearly.

Monday, November 22, 2010

Full Moons

I have a love/hate relationship with the full moon. It is so beautiful to see the full moon light up the night sky, especially in the fall when the air is crisp and cool. But on the flip side the full moon in the fall wreaks havoc on my daughter's emotions. The full moon in the spring is equally as tough.

This past week has been one of increased manic behavior. Mary has not slept well 5 out of the last 7 nights. Our rule of thumb is if her sleep is off for two nights in a row, we call the doctor. She has slept well one night and not the next, etc. She is having bad dreams again which makes sleep more difficult. Last night she slept in our room on the floor because she was not feeling well. She was SOOOO restless! She kept moaning and moving all night long. She is dragging and slow moving in the morning, but by afternoon she is talking fast, can't sit still, and feeling "exuberant". I took her to the grocery store with me one evening and she was spinning around in circles up and down the isles, lifting the shopping buggy up like it was a barbell weight set, and singing about mundane things over and over again. Since she is not in school and anxiety does not seem to be an issue right now, I have come to the conclusion that she is cycling.

On top of that, she has a stuffy nose, cough and has been complaining off and on about her stomach hurting. Since we increased the lithium we are watching for signs of toxicity. Stomach pains and flu like symptoms are some of the first signs that the lithium is too high. So, is she starting to become toxic or does she just have a cold??? To rule it out completely we would have to get a blood level done... that is so NOT going to happen! My gut says it is a cold. But we will be watching her even more closely over the next few days.

Our next doctor appointment is the Monday after Thanksgiving. I am praying right now for the wisdom of Solomon to be imparted on our doctor. I am not sure what the next step will be, but I am confident that she will have some good answers for us. Until then we will just continue to watch and pray.

Monday, November 15, 2010

Seeing Some Improvement

It has been just over 2 weeks since Mary came home from the hospital and it has been a good time of helping her get her feet back under her. She is still not in school. We are waiting on paperwork from the pdoc to get homebound services started again and still exploring what our other options are. I am a bit unsettled as to what to do for school. My first thought is to have homebound provide her schooling for the rest of the year and use that time to figure out what to do about next year. However Miss Mary has her heart set on going to a small Christian school. One of the first things she said to me when we started talking about this as a possibility was "If we do that, then the kids can pray for me as well as the teachers". What a sweet girl! We will see how it pans out. At this point, it would totally have to be a God-thing because there is no way that we can pull that off financially and if we pull her out now from the public school system we lose all hope of receiving any financial assistance from them in the future unless we put her back in for a full year. We also have to consider how stressful it might be to be put into a new situation where the teaching style is so very different than what she has experienced her entire school career, and on top of that, to be put into that situation mid year. It may be just what she needs, but then again, it may not. If we pull her from the public school, put her in the Christian school and then it doesn't work out, not only will we have lost the financial assistance from the public school, but we may have also lost the chance to put her in any private school. And we have no idea if the schools we are considering would even be willing to take Mary mid-year with all of her issues. I am praying that God would direct our steps clearly.

Medically we are seeing some improvement which is a very good thing. Her lithium levels were pretty low in the hospital so we made the decision to raise her dose of that. It is something we do with lots of fear and trembling since she gets toxic so quickly on it. But she has been on the higher dose for 2 weeks now and so far is not showing any signs that it is affecting her adversely. We really need to get some lab work done to see what her levels are now, but of course I don't think that is going to happen without major trauma. We are also lowering the anxiety medication back to what it was over the summer. The higher dose of that did not seem to make any difference in her anxiety level, so there is no reason to keep it so high. That medication can be pretty hard to come down on so we are watching her carefully. So far the only complaint has been these short lived intense headaches. They last less than a minute, but are pretty painful. I don't know if that is from the medication withdrawal, or something else entirely. I will mention it to the pdoc when I talk with her again.

We have been asked to be part of a research study that is groundbreaking in finding a genetic link to childhood bipolar disorder. It is something we think could be huge in finding a cure for bipolar disorder, or at least be better able to target the treatment of it. Part of this research has narrowed down a subtype of childhood bipolar disorder which they are calling Fear of Harm (FOH). It is the most severe type of this illness and thus the hardest to treat medically. Mary meets all of the criteria to fit into this category and it is wild to read an even more accurate description of what we have seen in her, especially before any medical intervention. Of course this is in such an early stage of research that there are no guarantees, but we are hopeful none the less. You can google Fear of Harm and read more about it if you are interested.

I have added a new song to the playlist on this blog. This is my prayer for Mary these days: Be strong in the Lord, Never give up hope, Your gonna do great things, I already know. God's got His hand on you so don't live life in fear, forgive and forget, but don't forget why your here. Take your time and pray. These are the words I would say!

Sunday, October 31, 2010

A Brief Update

Sorry it has taken me so long to post an update on here. It was a very busy week and did not turn out as we expected it to. Mary is home from the hospital. We are far from being out of the woods, but at least the imminent crisis is over for the moment. The hospital did nothing to treat her medically, but we did have a really good "lightbulb moment" family meeting with the social worker there. It was really hard for her to be separated from us this time around and she cried every time we talked with her on the phone and every time we saw her. The separation anxiety kicked in big time and unfortunately I think that one of the things she learned through this experience is that "if I am a good girl, participate in group, and tell them that I am no longer wanting to kill myself, then they will let me go home." (We actually heard one of the counselors use almost those exact words to try and comfort her when she was crying!) We are trying really hard to focus on the positive things and remember that we are ambassadors in this dark place. It is hard though to not complain about what the hospital did or did not do while she was there. I realized that it is really hard for me to talk about it without being sarcastic and ugly. Sometimes it is going to be much easier for me to say nothing at all. After all, she thinks that it helped her, and in the end that is what really matters.

The lightbulb moment is a good and positive thing I can talk about, so here goes... We started the meeting talking about what a good summer Mary had. She was so stable and things went very well all things considered. When we started talking about what had changed and brought on all of this anxiety, depression, cycling, etc., I realized that school was the biggest trigger. Now I knew that before the meeting, but it hit me in a different way. I don't know if I can accurately describe it, but will try. For Mary, school has always been really hard. For the majority of the years that she has been in school, she has held it together all day long and when she would get home, she would have raging fits that would last for hours. That was her way of releasing the stress. People REALLY stress her out!!! Lots of noise really stresses her out! And school is full of people who are noisy. Now that she has had a time of stability to learn new coping skills, and she has matured enough to not be raging all the time, she is internalizing all of that anxiety and stress. It is building and building up inside of her until she feels like she is going to explode, thus the analogy she uses that her brain feels like a soda bottle that has been shaken up. She said that even when she is doing something that she really enjoys or has a particularly exciting day (at school or otherwise) she feels really stressed at the end of the day. She is a true introvert and the stress of being around crowds of people makes her physically, emotionally, and psychologically exhausted.

We have doctor appointments on Monday and Tuesday this week where we will be addressing the medication issues and start trying to figure out what we should do about school. There are many options out there. One option is to have her resume going to the local middle school for one or two classes and have the homebound services started for the other classes. That seemed to be working ok before the big crisis. If we go that route, we will need to work some time into her day at school for her to have some quiet, undisturbed, recharging time. Maybe listen to the lecture and then take her work to the counselor's office to finish it? If she can recognize when she is starting to feel the sensory overload and step back from it, that might make a huge difference.

Another option is to have her start going to class in the resource rooms. That is not the best option because she is probably above the level that many of those kids are at academically. But it would be a much smaller classroom environment which might be less stressful for her. And it might be good for her to be at the "top" of the class for a while to help her regain her confidence?

One other thing we are looking at is possibly putting her in a small private school. There are pros and cons to this idea. The smaller class size would be great and a Christian environment might be just what she needs to feel safer and more comfortable. On the down side, most of the small Christian schools around here probably would not have the staff training to deal with some of Mary's learning issues, nor would they necessarily be able to modify their curriculum to meet her needs. Another drawback to this option is of course funding it. Georgia has a special needs scholarship for kids who are in the public school but who would benefit from attending a smaller private school. We have passed the deadline to enroll in it for this year and if we pull her out, we lose the opportunity to get it next year. And changing schools mid-stream might be really hard for her.

Our last option would be to home school her. I know that many parents out there are successfully home schooling their bipolar children. I do not think that I would be one of those. I really feel that it might start out great, but when we got to something challenging or difficult, Mary would get frustrated with me for pushing her. I am not a great teacher and consistency is not always my strong point. I think that I would be too easily able to jump on the emotional bandwagon with her. I need to be able to be Mom and comfort her when she is frustrated, not add another thing for her to be frustrated with me about.

I am sure there are more options out there. These are just a few we are going to explore this week. If anyone has any other ideas, please feel free to let us know.

Well, it looks like my brief update has turned into a long update and there is still so much to say. I guess I will save it for another day...

Tuesday, October 26, 2010

Processing Out Loud

I will go ahead and apologize up front. This post will be rambling and probably long. It may make no sense or follow any logical order...

I find it so hard to believe that we have gotten to this point again already. Almost 6 months to the day of Mary's release from the hospital, we had to re-admit her. She spiraled out of control so quickly this time. And the things she was saying and doing were scary, super scary! Scary enough that we had no choice but to take action and get her extra help. I know that it will be a good thing. She was ready to go, asking to be taken back to the hospital in fact. We held off until the weekend was over because from experience admitting on the weekend wastes time and money. We felt like we would be able to keep her safe at home, and we did. But it was not without cost. She is so suicidal right now and that scares me. We made the right decision.

The road back to the hospital was not without ups and downs of it's own. We really struggled with putting her in the same hospital she was at before. The outcome of the last inpatient treatment was overall okay, but we really had some struggles with getting information and getting on the same page as the hospital staff. We looked into a couple of other hospitals in the area. The one we really wanted to go to would not take her until she is 12. Come on, really? She will be 12 in 2 months! Our pdoc even called them to see if there was anyway they would take her. A big fat NO. So we looked into a new psychiatric hospital which is about an hour and a half away. From the website it looked very promising. They do lots of art therapy (Mary LOVES art). They only have 12 kids on the unit at any time, so more one on one care. I called and spoke with some of the people there and just got a great sense that this would be an ideal place for her. Problem was that there were no beds available at the time we called. By 3:30 in the afternoon there was one bed available and our pdoc called to reserve it for us. We were loading up in the car when she called back to say that the only way they would consider taking Mary is if we went to an ER first and were referred to them that way. Talk about a waste of hours of time and hundred's of dollars. And who knew if the bed would still be available after our hours in the ER. So we ended up back at the same hospital we were at in April. At least this time we went in knowing what our goals are and what we expect the hospital to do. We made sure that her pdoc was involved in the whole process and she has been talking with the pdoc assigned to Mary while she is in the hospital. I am hoping that we are on the same page from the beginning this time. They did do blood work this morning, but at least they gave her a sedative before hand like we had asked (no really we demanded) that they do. Unfortunately the sedative did not work, she fought them, was traumatized, suicidal, and remembers the whole thing. This particular medication is supposed to act as an amnesiac, guess it didn't work.

I was holding up okay until we spoke with Mary tonight. She was very sad and just wanted to come home. She misses us tremendously. Part of the depression this time around has involved severe separation anxiety, so it should not surprise me that she is feeling this way. I know that she needs to be real with the staff while she is there. I know that if she is all peaches and cream they won't really be able to help her. I know she is in a safe place if and when she becomes suicidal again. She needs to be there in that safe place to learn better ways to cope with this overwhelming desire to die, while she is feeling sad and alone. I know all these things, and yet my heart is breaking right now. I want to be there to comfort her when she is sad. I want to shield her from the uncomfortable things. I want to hold her and tell her that it is going to be okay. I so long to be able to take this away for her. I find myself challenging God... if you are who you say you are, then show yourself here.

We get to go see her tomorrow night. I am so looking forward to holding her in my arms and seeing her. At the same time, I think that it is going to be hard on her and on us. She is so homesick that I am afraid that she is going to spend the night begging us to take her back home. I have visions of us having to leave her there screaming for us not to leave. I pray that I am wrong. I am praying that it is a great visit. I am praying that she is brave and strong and encouraged to continue. I am praying that I can be strong and encourage her instead of giving into my own desperate need to hold her longer.

We have not talked with the doctor yet, so I have no idea what time frame we are looking at. I don't see how anything will be accomplished in less than a week. I would not be surprised if it is more like 2 weeks. I hope that the doctor will call us tomorrow morning. I am gathering school work and letters from friends to take with us when we visit her.

I guess I will end this post with a request for prayer for us right now. Please pray that God would use this time in all of our lives for His glory, that we would see His hand at work, and that we would be at peace. I want to remember that I am an ambassador for Christ in a dark and lonely world. That world for us right now includes the children's ward in a psychiatric hospital. Even though my own heart is full of questions and apathy at times, that is just the place where He can use me the most. All of Him and none of me. I know that He is who He says He is and that He is never late.

Monday, October 18, 2010

Feeling Set Adrift

It is decision time as to whether to continue with the homebound services. The new semester started today and Mary really, really wants to add in connections classes. The problem is that if we do that we lose the homebound services and I am left teaching Language Arts and Science. I am so torn right now. Part of me thinks that we should go ahead and add in just the connections and I will do the best I can in teaching her the other two subjects. Maybe it would just be for a week or two until we can see how she tolerates the extra stress? If she handles it well, we could try adding in one of the other classes. And part of me thinks that maybe she is ready to go back a full day? But I would really hate to push that on her if she is not ready. I don't want to take two steps forward just to take ten steps back. Knowing that she goes down the suicide road when she becomes uncomfortable makes me hesitate to add in more than one class. I am so worried about making a bad decision, and I shouldn't be. Nothing that we add can't later be taken back if she doesn't adjust well. Sooooo, what do we do?!?

I guess part of my distress in trying to make a good decision is linked to my spiritual walk, or lack of it lately. I feel like I am in a spiritually barren place right now. I am questioning beliefs that I have had for most of my life. I wonder what the purpose of all of this suffering is? The universe is so big and we are so small and insignificant, does God really care? And if He does care, WHY? I find it hard to sit through a service and concentrate. For the first time in probably 8 years I am not involved in any type of Bible study at church. My current schedule makes it almost impossible to be in a study this year, but I do miss the accountability that comes with being in a regular group of ladies who are praying with and for each other. I also find myself in a state of apathy much of the time. I feel unmoved by my spiritual state. Usually worship songs can bring me to tears, but I just feel dead inside. All of that adds to my questioning. If I really love God, shouldn't I feel more affected by all of this? Is my apathy a sign of my spiritual deadness or is it a mode of emotional survival?

I know the solution is to make time in God's word a priority not an afterthought. I think that deep down I am fearful that letting myself feel anything will lead to the dam bursting. That one little hairline crack can lead to a flood of emotions that maybe I am not ready to deal with right now. As a parent of a bipolar child I have had to condition myself to put on my game face, don't jump on the emotional roller coaster with my child, build up a tolerance for words and actions that would otherwise be considered abuse if it was coming from anyone but my daughter. So, instead of feeling all of the bad along with the good, I put on my "liar face" and say all the right things, not really feeling any of them. One of my favorite authors, Nancy Kennedy, has an acronym for the word fine... Fouled up, Insecure, Neurotic, and Exhausted. I think that pretty much describes me right now.

Wednesday, October 6, 2010

I think God made a mistake when He made me...

Those are the words that I heard from my daughter not once, but twice today. Talk about heart breaking! What do you say to that? I tried to reassure her that God made her perfect and that He has big plans for her life. She is here for a purpose and that we love her. She is beautiful inside and out. But I don't think that much of it got through the fog of depression that is settling into her brain.

I know it has been a long time since I updated this. I have thought of lots of things to write about, but have found that life is rushing by at the speed of light and I just can't find the time to sit down in front of the computer. It is funny, I went to a ladies conference this past weekend and one of the speakers was a comedian who was just great. She did touch on birth order in her routine and made mention of the "baby" of the family who had probably come with their mom and was sitting by them right now. Of course I am the baby of the family and I was sitting with my mom. That was all great until she said that it was time for the babies to go out and get a job. It was all I could do not to stand up and say but I do have a job... not one but two part time jobs, plus I am going to school, being a wife and mother, oh yeah, and raising a bipolar child. I could still laugh at the stero-type of the baby in the family. But it did get me thinking.

So the short version of what has happened in the past month is that we were able to get hospital/homebound services for Mary, and she is attending school part time (for the last 2 classes of the day). We are up for re-evaluation on those services now and have to make some decisions as to what to do. If we add in any more classes, we lose the homebound services. But if we don't add them in, she will be disappointed (she was looking forward to art and creative expressions) and will have to wait 9 weeks before we can think of adding them again. She is not stable enough to handle a full day of classes, so that is not an option. We are still adjusting those medications to try and level out the anxiety issues. Obviously we are not there yet.

One interesting (or terrifying?) thing we have learned about the way that Mary thinks... when ever she becomes uncomfortable with any situation, no matter how minor, her brain automatically jumps to the "I don't want to live anymore" thoughts. Most kids would think that this is the worst day ever, maybe tomorrow will be better? Or that person really upset me, I am mad at them. Or I am really uncomfortable/unhappy about this, I want it to change. But with Mary it is an automatic I want to die. Or another one that we hear- I will never trust that person again. We are working with her therapist and here at home to try and help her brain not jump to such dire conclusions. Obviously we are not there yet with that either.

So, back to her comments to me today. She is really struggling with depression this week. It could be all kinds of circumstances that have led up to this. I was gone this past weekend (and I am almost never gone). Mark left the day after I got home for a couple of weeks. School could or could not change in the next two weeks? We went up on the anxiety medication and the last time we did that I noticed an increase in suicidal thinking for a couple of days. AND... it is October, a historically hard month for her. I guess it is just a matter of watching, waiting, and praying for improvement. And preaching to myself the same thing that I am telling her. God has BIG plans for all of this!

Thursday, September 2, 2010

Avoiding the hospital... for now

We had a really good visit with Mary's pdoc (psychiatrist) this afternoon. I think that Mary spent more one-on-one time with the doctor today than she has in all of her visits over the past 4 years combined. This is a good thing. She was able to really communicate what she is thinking and feeling without getting upset or shutting down. That is HUGE for her! The bottom line is that she is in danger, but not imminent danger. Right now it is all thoughts and no actions. However if we let it continue it will escalate to actions, and then we would have to admit her to the hospital again. That is all the good news.

Now the not so good news... it will take weeks or months to get her back to where she is comfortable enough to attend school for a full day. As of right now we are working on a plan for the next few months that will hopefully include some homebound services, attending school for a part of the day, maybe some home-school co-op groups, and slowly adjusting from there as she gets more comfortable.

A funny note from today, Mary had told her pdoc that she wanted to start a club that is called "Give the Earth a Break for Pete's Sake". She described in detail what the club would do like go to a park, do some type of litter pick up and then have a picnic. The pdoc thought that Mary meant that she knew of such a club at school and wanted to start going to it... No, this is a club that Mary has thought up herself. So, we are going to see what it takes to start a club at a school, or somewhere else? I've never been ambitious enough to want to start a club, much less been inclined to be a "tree-hugger". But our sweet Mary has such a heart for every living thing that this would be a dream come true for her. If anyone has any ideas how to get this going, please let us know.

Wednesday, September 1, 2010

Not sure what to say!

It has been an interesting day (well really it has been an interesting few weeks) around here. As I posted earlier, Mary has had a really tough time adjusting to middle school. After the first week, it has been all downhill. I ended up keeping her home from school for the last half of last week. We went up on her anxiety medication and she seemed to be doing a little bit better. She went to school on Monday, although as the time grew closer to leave for the school, she grew increasingly anxious. She ended up going, but called me crying twice and then wanted to come home early. On Tuesday, she went to school, again with a lot of anxiety, but she only called once and was able to stay all day.

Then this morning hit! She was very worried all morning about going to school. She keeps telling us that she is very uncomfortable in school, she is very scared, she is homesick and just wants me to homeschool her. As her anxiety grows, I am also seeing an escalation in her frustration level. She has been so great at home and such a sweet angel. But I can see every time she starts to think about school, she gets anxious and then frustrated. I can understand to some degree how she is feeling. I know that I get frustrated when I feel like people just aren't listening to me, not hearing what I am really trying to say, or just not understanding the seriousness of what I am feeling.

I was able to have her get ready for school and drop her off at normal time. I came home and started working on picking up the clutter, loading the dishwasher, etc. I had not been home more than 10 minutes when the phone rang. It was the counselor at the school who very abruptly told me that he had Mary in his office and I needed to come pick her up immediately... she was talking about killing herself. When I got to the school, I had to sign a form stating that I had attended a "crisis meeting" and that I had been advised that we needed to seek immediate help for her. The crisis meeting consisted of the counselor telling me that she had been in his office every day this week, that she was very distraught, and that she had said she wanted to kill herself by strangling. Mary's first question was "do I have to go back to the hospital?". I told her no, that I did not think that would be necessary and that I knew she did not really intend to kill herself. I was then informed that she could not return to school until she had received medical treatment and her psychiatrist had signed off that she was stable enough to be in school.

I was able to get in touch with the doctor who has made room in her schedule to see Mary tomorrow. I was also able to get her in to see her therapist this afternoon. All day she kept telling me that she was still thinking about killing herself. Thankfully she is not acting on any of it, but she is definitely feeling desperate. We are on high alert and watching her closely, although I really don't think she would follow through with it. But you can never be too careful. I have also asked the school what we need to do to get the ball rolling on having homebound services take over the schooling part of life for now.

Who knows what tomorrow will bring? Praying for some good answers from the doctor. I will keep you posted!

Friday, August 20, 2010

It's Only August... But October is Coming

It figures that when I post good news, harder times are sure to follow. It has been a much harder week here for Mary. A little bit of background for you on the post title...

Typically the first few months of school are pretty good and then we hit October. I can only think of one October since Mary was diagnosed with Bipolar Disorder that has been stable and good (really I can only think of one October since she was a baby that was good). Usually around the middle of October, the cycling begins with depression. Now when Mary starts to cycle, it is pretty rapid. In fact her official diagnosis includes the words "mixed" meaning that her depressed thoughts and her manic thoughts co-exist and cycle so rapidly that it is hard to tell where one stops and the other begins. What we have noticed is that in the fall her cycling tends to be more toward the depressed side and the spring the cycling leans more towards manic. And really the only way we can tell that is her energy level. Her symptoms are pretty much the same for each thing, but one will usually be a little more dominant. One way we look at it is this: Mary is part of a huge pendulum that is swinging back and forth from one extreme to the other (depression to mania and back again). That pendulum also includes a freely spinning ball which turns on its own axis and spins sometimes every few minutes, sometimes every few hours, sometimes every few days, etc. That ball represents her moods within the huge arc of the pendulum. She can cycle from manic to depressed and back again in a matter of minutes sometimes, but overall the mood is moving towards one side of the pendulum. We usually have a couple of months in the "in-between" where the pendulum has swung back from one extreme and is gearing up to move towards the others. These are our more stable periods. Thankfully the use of mood stabilizing medications has made the huge arc slow way down so she has fewer days at either extreme and more days in the in-between phase. They have also helped regulate that spinning ball so that the mood shifts every day are less dramatic and more manageable.

So, what do I mean when I say October is coming? This week I have noticed more anxiety and depression creeping in. It is a little bit early for this to start, we are only at the end of the second week of school. I was really hoping for another month or six weeks of stability. Don't get me wrong, Mary is handling it well so far. We are not deep into the cycles. She is not raging or threatening suicide. But she is just very down and stressed. Every day this week she has asked me about the possibility of homeschooling her. She has NEVER wanted to be homeschooled before! She said she is getting homesick at school and she misses me. This morning when we pulled up to the school to drop her off, she started crying and just could not pull herself together enough to get out of the car. We dropped everyone else off and then she and I took a few minutes to go to Target and walk around. She was able to calm down enough to go to school with the idea that if she became too overwhelmed, she would call me and I would come get her. In the evenings this week, she has been extra cuddly and needing that reassurance. I love having her be snuggly and want time with us, but I wish it was not because she is feeling so sad.

So, what do we do?!?!? I think that she would really miss school if we pulled her out. I think she needs that social interaction and she especially needs the extra help and teaching skills from an unbiased outside source that the teachers provide. I think she would be bored after the first week and want to go back to school. And if we pull her out, I don't know what would happen to the IEP? Would we have to start back all over again to get her the accommodations that she needs? I am working 2 part time jobs that I really enjoy. I am going to school myself for the fall. If I homeschool her, when would we be able to fit that into the routine? Can we qualify for the homebound education from the school system? What would be best for her? These are all questions that are running through my head as I sit here and ponder what to do. And it isn't even October yet...

Monday, August 16, 2010

First Week of School

Last week was the first week of school for all the kids. Overall, it went very well. After Mary's meltdown at the open house, I called a meeting with all of her core teachers to make sure we were all on the same page. It went really well and I feel like everyone knows a little bit more of what they are dealing with. The only really negative incident happened on Thursday when one of her connections teachers called to tell me that she had made Mary cry in class. She explained that there were several kids in that class who are always goofing off and making everyone behind schedule, so she had really been pushing the whole class to get into class on time with all of their materials ready. On Thursday, she had "yelled" at the kids (Mary says this teacher yells a lot) once again about not being on time, and Mary just could not take it any more. She broke down and cried so hard that the teacher excused her from the room. On Friday Mary was just "off" in the morning and dragging her feet about getting ready. I asked her if she was okay and she said she just didn't want to go to that class anymore. I realized this morning why that particular incident probably upset Mary so much... she HATES being rushed. If the teacher is feeling rushed and is pushing that onto the kids, of course it will set Mary off. I am debating whether to have her pulled from that class and moved to a different connections class, but hate to do that after just one week and one uncomfortable incident. I told her to try it one more week and we will see how she feels about it. The thing is that I think this could potentially be one of her favorite classes. It is a home-ec type of class and she just loves to cook. But if she is constantly feeling rushed, she won't enjoy it at all and that just saddens me.

This morning was a little bit harder. She was sad and moving at a slow pace getting ready for school. She was even a little teary when I dropped her off. Thankfully she had one of her best friends there to encourage her. She told me when she got home that she was really depressed this morning and very tired. She seemed to be better this afternoon. I am hoping that a good night's sleep tonight will make tomorrow morning easier.

An update on the medication front... We did decide to put Mary back on the anti-anxiety medication. It became very obvious after being off of the medicine for a week that the anxiety was returning big time. She was having trouble making decisions, beginning to worry about little things, and very "on-edge" about everything. She was having separation anxiety and I could not even go to the store without her calling every few minutes asking when I was going to be home. The tears were coming much more frequently and she was also starting to feel the suicidal thinking creep back in. The final straw came when she went out on the lake with some friends of ours for the day. Later that evening, the dad (who also happens to be our family doctor) emailed me to tell me that Mary just did not seem right. He confirmed all the things that I had been seeing at home. She has been back on it now for just over 3 weeks and it has definitely eased the anxiety of starting middle school. I am really glad we caught it before it became a huge issue and that it had enough time to get back to therapeutic levels before school started.

Wednesday, August 4, 2010

So It Begins...

Open house was today for Mary's middle school. She has been soooo excited about starting middle school. All went really well at the school until we met the last teacher of the day. All of Mary's classes are co-taught classes which means that there is a resource teacher in the classroom with her to help her and any other kids who qualify for special education services. We have explained this probably a dozen times and she seemed fine with it. However when we met her last teacher, the resource teacher who is going to be in there with them was not in the room. She has her own classroom which she teaches in when she is not being a co-teacher and it happens to be a small "resource" room. We went to her classroom to meet her and Mary immediately began to get nervous. She realized that it was a resource room, not the regular education classrooms. One of her biggest frustrations in school this past year and her biggest fear for this coming year is that she will be pulled out from the regular classroom for testing, reading assignments, small group study times, etc. So, Mary started asking questions about what a co-teacher does, what does that mean for her during the day, and would that mean that she would be pulled out of class? Of course this teacher does not know Mary and has not been given access to her IEP yet, so she did not know that being pulled out is such an issue. She started to talk to Mary about how once a week there is a group of about 9 kids who will go with her to her room for reading time, then to computer lab and then back to her room for homework help. That was the match to the fuse! Mary got very upset and told her that she absolutely WOULD NOT go out with her, that she was in NO WAY going to be pulled from the classroom, etc. She refused to leave the room until the teacher could promise her that this would not happen, which of course the teacher could not promise. So, we left the school with Mary in tears and threatening to punch any teacher or administrator who tried to force her to be pulled out from classes and I was close to tears myself.

I am sure that this will all work out fine in the end. I realize that being in middle school we are going to have to advocate more for her and that there will be more red tape that has to be gone through. She is going from a small elementary school that serviced maybe 50 students who have an IEP to a middle school that probably services a couple of hundred students. And I know that these teachers here don't know her the way her elementary school teachers did, but they will get to know her as the year goes by. Oh but I long for her to have a smooth transition, for her to feel like a "normal" kid for once. There is a fine line between protecting her from the frustrations that I see lurking around the corners (lockers that won't open, crowded halls, difficult homework, etc., etc., etc.), and letting her experience middle school as any other kid would. I have to fight for her and let her know that we are on her team, but also step back and let the system do it's job. She wants to be treated like any other kid... as long as that doesn't involve doing something that makes her uncomfortable. And we are left walking that tightrope trying to find our balance.

Tonight I am praying for a smooth transition over the next couple of weeks. I am praying for Mary to be flexible, not rigid, for her to be willing to try new things. I am praying for her teachers and the administrators at the school to have compassionate and understanding hearts towards my child. And I am also praying for peace in the midst of what could become a storm of hurricane proportions if the transition is not smooth, that our family would be a light to those around us, and that we trust the ONE who is ultimately in control of all things.

Thursday, July 22, 2010

A Change in Meds... A Change in Moods?

We have been slowly tapering off of the anti-anxiety medication that the hospital put Mary on. Our first problem was the fact that the pill in itself was very tiny. I was supposed to cut it in half and give her half a dose for 2 weeks to see how she reacted. I found it almost impossible to cut the pill in half, even with a pill cutter. One part would be 2/3 of the pill and the rest would just crush to powder. There was no way to accurately give her half a dose and with that particular medication I did not want to give her 2/3 of a pill one day, 1/3 the next, maybe half the next. I did not feel like that was a good way to taper down off consistently. And, at a little over a dollar a pill, throwing away several in my attempt to get an accurate half, it didn't take me too long to decide that this was NOT going to work. I took the pills back to the pharmacist to see if maybe they would have more success than I did. They did not even want to try to cut them, but said that there was a liquid version available if we could get a new prescription called in for it.

The liquid version was not pleasant tasting, but Mary managed to get through the two weeks at the half dose. I did start to see a few differences in her ability to cope with changes in routine, making decisions, and just overall sense of inner calm. She was still handling it well... verbalizing when things were bothering her instead of throwing things across the room... knowing when she needed to pull back from an activity and just have some quiet time. There were a few days when I thought that we were going to need to call the doctor just watching the sadness creep back into her eyes, but then she seemed to perk back up and level out again.

After the two weeks at a half dose, we tapered down even further to a half dose every other day for a week. That did not seem to bother her, so after that week, we discontinued that medication completely. The first few days were fine, but the past few days she has again been struggling with feeling stressed by little things. She said that it feels like there is a soda bottle in her head about to explode. Changes in routine bring her to tears.

At this point, I don't know if it is the medication change, or if we are starting to see the cycling come back again. I hate to even think this way, but when she was up at 6:00 AM yesterday, dressed and cooking everyone breakfast as a surprise, I caught myself wondering if I was seeing some mania creep back in??? And then I immediately started to feel guilty. She should be able to be excited, organized and helpful without me wondering, wondering, wondering. I would hate it if someone was always suspicious of my good intentions and my good moods! And yet, that is just what I do with her. Where is the balance between constantly monitoring her mood and letting her be a typical kid? I don't want her to pick up on that and blame every good or bad mood on being bipolar. I don't want her to put herself in a box. But later in the morning when an unexpected change in plans drove her quickly to anger and tears, I wonder again... this is a pretty typical manic reaction... not severely manic, but are we just building up to the major rage? So, I am left wondering, watching, and waiting. Praying my gut reaction is wrong.

Monday, July 12, 2010

The Story Behind the Song

You may have noticed that I have added a playlist to this blog. This song has been one of my favorites for a long time and in fact is the ringtone that I have set on my cell phone for whenever one of our doctors call me. A couple of weeks ago when we were driving in the car, Mary asked me to turn on the radio to the local Christian radio station. This song came on. She asked me to turn it up and after it was over she said that she really likes that song. I asked her why and she said, "it gives me hope that one day my bipolar will be under control." That just brought tears to my eyes because that is the exact reason it is one of my favorites too. Under all this mess of life and all that she deals with, my little girl is putting her trust in Jesus and finds hope that there WILL be a day where she has no more tears, no more pain, no more fears. Thank you Jesus for giving her (and me) that hope!

Summer Update

This summer is just flying by! I can't believe that we only have 3 weeks left before the kids are all back in school. It has been a good summer so far. Of course we have had a few bumps in the road, but overall things have gone smoothly.

Mary had a great week at 4-H camp! She really enjoyed being there and all the fun activities that they did. She did get a little homesick the last few days and was ready to come home when the week was over.

This past week we were able to join Mark in Fairmont, West Virginia at Dayspring Camp. It was a great week. We all worked hard and came home exhausted. But we were able to serve the teams that were ministering to people in Fairmont and the kids were also able to join the teams in town at some of the job sites. It was such a blessing to our family to participate in Mark's job in this way. On the way home we stopped at the world's longest continuous arch bridge. It made the trip home longer but we decided that we were going to enjoy the trip and not be so focused on the destination.

In between all of the travels we have been busy with swimming with sweet friends, going to the library every week for their programs, going to the free movies, and just having fun together. Mary continues to be stable, even with all of the changes in routine. Of course we have had a few rough days, but that is normal and to be expected in any child.

Sunday, May 30, 2010

The First Full Week of Summer Break

As we got to the middle of last week, I realized that we had hit the "one month" mark since Mary's discharge from the hospital. I mentioned it to her and she looked at me a little strange. She asked me "Why would you celebrate something like that?". To me, looking back on the past month I am encouraged at the changes that we have seen. I am tentatively optimistic that maybe we have found the new cocktail of medications that will work well for Mary, at least for a time. I am thankful for the good days we have had together. So that is why I would celebrate.

The first full week of summer went better than I expected. I knew there would be some anxiety with the change of routine, the boredom, the dentist appointments and doctor appointments scheduled for the first part of the week. But, overall Mary handled it fairly well. There were some tense moments, especially when Noah pushes all the right buttons. But there were no major (or even minor) breakdowns. Praise the LORD!!!!!

Mary is very excited about going away to her first sleep-over camp. She has been asking to go to camp for years and it was never the right timing or the right cost. This year she found out about 4H camp through the school 4H program. She did all of her homework and wrote us a nice long letter about how much she wanted to go to camp. She included all the answers to questions she knew we would ask (what about medications, bugs, friends, handling the change in routine, frustrations, meltdowns, etc.). After several weeks of agonizing over the decision, and a couple of calls to the 4H coordinator to discuss Mary's unique situation and our fears, we did decide to let her go. The one thing we have told her all along though is that she has to be stable enough to handle it before she leaves or all deals are off and she is not going. We have also told her that she has to be able to hold it together when she gets home too, or this will be her first and last time going to camp for a long while. So far she is holding up her end of the bargain. And I realize that she can't totally control how she is when she comes back, there will be frustrations and meltdowns beyond her control, but if it continues as it has been, I think she will do fine.

As far as medications go, the new one that we started 3 weeks ago seems to be helping her a lot. So far we have not seen too many negative side effects. She has gained a few pounds, but her appetite is not voracious as it has been on other medications. I am hopeful that with plenty of exercise and activity this summer that gaining those few pounds will not become an issue. After she comes home from camp, we will start tapering off of some of the other medicines and see how she does. This will open the door for us to add in something else should the weight gain become more of a problem. The last thing we want to do is have her overmedicated or on some medicines that she really doesn't need. At the same time we don't want to switch things too much since what she is taking is working and helping ease the transitions. We don't want that anxiety to creep back in, especially right before starting middle school for the first time. It will be a balancing act as it always is.

Another big change this summer will be that fact that Mark is going to be out of town most of the summer. I am not stupid enough to post the dates he will be gone, and I even debated putting this out there for the world to see, but I covet your prayers during this time, both for us here at home, and for Mark as well. It will be challenging for all of us. I am so thankful that he is at least in the country so we will have daily contact with him. He is only a phone call or email away and if anything goes bump, he can be home in a matter of hours. I am so thankful for our church family here that are super supportive and always willing to lend a helping hand. It gives me a new appreciation for those who have loved ones serving in the military who are away for months or even years at a time. I know God will carry us through this time and He will use this in our lives to draw us closer to Him, and that is the ultimate goal of every situation He puts us in.

Monday, May 10, 2010

2 Weeks Out

The past 2 weeks have flown by. It has been full of end of the year school activities for everyone, and I am very thankful that we have not had to drive back and forth to Dunwoody every day as we originally thought we would have to do after Mary's release. I think overall there have been some positive changes, and we are trying to focus on those instead of the negatives. There are still meltdowns every few days, but the tone of them has changed. They are no longer the raging, angry, hate filled meltdowns. They seem to be triggered more by physical discomfort rather than emotional angst. And she does not want me to leave her when she is melting down, which is very unusual. Normally she is spewing such hatred and anger towards us that there is no choice but to walk out of the room.

To be honest, the first week having Mary home we felt very medically alone. We were not given much in the way of discharge instructions or things to be watching for on the new medication. We were told to follow up with our primary doctors, which is a great idea... however, there were no appointments available that week. The paperwork said that her cholesterol was elevated. Okay, but it also said that the lab work was done fasting at almost 11 AM. So, either they were wrong about the fasting part, or they did not feed my child until lunch time. If it was not fasting then the cholesterol results would not be accurate, and if they did not feed her before lunch time, that was not good either. I do want to give the hospital staff credit for what they tried to do for Mary. I am sure that our family was a real rarity for them. They are probably not used to patients who come from an intact family where the parents really WANT to be involved in the care of the child. We were not ones to just drop her off and say call us when she is fixed and we will come get her. Unfortunately for the staff though this means that we are much more likely to catch any mistakes that they make and for us to walk away saying that we could take better care of her at home. We learned a lot from this experience and know that we will carry that knowledge with us if we ever have to do that again.

Last week the feeling of being alone improved greatly. We were able to get in to see both the psychologist and the psychiatrist. And they confirmed what we already know, she is still manic and the cycling has not stopped or slowed down. We also received an email update from one of the bipolar child websites that we belong to that had some really interesting research in it. I won't go into all the details, but the short version is that they have been doing DNA research on children with bipolar disorder and they have been able to narrow down a more specific subtype of bipolar disorder in children. They are calling it the Fear of Harm (FOH) phenotype and in reading over it, Mary really fits that profile. If you are interested in reading more about this study and what they are finding here is a link to the page...

We printed out a copy of this web page and took it with us to the psychiatrist office. After meeting with Mary for a few minutes (in which time she saw that Mary was definitely manic or "exuberant" as Mary describes herself) and then talking with us and reading this information, we came up with a new plan for stabilizing Mary. Over the next few months we are going to be switching out most of her mood stabilizing medications. I approach this with fear and trembling, as we do anytime we change medications. I think part of my fear is that this one mood stabilizer has been so good for her. There was a night and day difference when she started it almost 3 years ago. She has had no negative side effects from this medication, so it doesn't interfere with her daily life. And it doesn't require lab work to monitor the medication levels in her blood. It worked so effectively that once we got her to a therapeutic dose, she was stable for over a year. We had our daughter back and life was good. So, I hesitate to change that, but I also have to face the facts that it is not as effective as it was and going up on the dosage did not make her more stable. I completely trust our doctor and I agree that we need to change things around. I just do it with a bit of hesitation if that makes sense.

A few things we are asking people to pray about...
1) that the new medication will take effect quickly and that there would be NO negative side effects.

2) that the transition coming up from school to summer break would be smooth. Transition is usually very hard for Mary and switching medications in the middle of it might not help things.

3) for wisdom for us as we navigate parenting her and the other kids.

4) that God would continue to soften our own hearts and encourage us to look outside of ourselves and love others well.

Wednesday, April 28, 2010


We were able to bring Mary home from the hospital on Monday afternoon! Praise the Lord! She was so happy to see her family, pets, and friends, and to sleep in her own bed again. So far, she is holding up okay. I do not think that she is completely stable. I still see some edginess in her. She is still manic, but she is a happy manic right now. I will take every minute of happy, joyful Mary that we can and worry about the crash that follows if and when it happens later. Mark was able to come home from West Virginia for the release, which was so great! She was able to go to school for the "big dig" on Tuesday and is going on a field trip with her class today. And some of the best news we received was that we do not have to take her back for PHP (partial hospitalization program) unless this week goes horribly. The doctor recognized that what we are dealing with is mostly medical, not behavioral. When Mary is stable, the behaviors are not a problem.

The new anti-anxiety medication that they started her on has the potential to make her cycle more, not less, but hopefully will at least help her deal with the obsessive anxiety that has been triggering these horrible melt downs and suicide threats. It can take up to 3 months to see the full effect of the medication, and it is possible that she will have to go up to a higher dosage to get the most benefit out of it. We are hoping that she will stay stable long enough for the medications to kick in and also that she will be able to apply some of the new coping techniques that she learned while in the hospital. For now, we are just extremely grateful for all the prayers, support, and help that everyone gave to us, and to have our daughter back under our roof.

Saturday, April 24, 2010

A Quick Update

As far as we know, Mary will be coming home on Monday. I am very excited to have her back home, but also a little anxious. I am approaching it with a little bit of trepidation. I think my biggest concern is the fact that as of today (Saturday) they have not done anything to capture the mania. They have started her on medication for anxiety, which I do think will help, but unless we stop the cycling, I am afraid that we are going to end up right back in there. Maybe I am wrong? Maybe the anxiety is what is causing all the issues? Maybe the anti-anxiety medication will also stop the cycling? I just don't know, partly because there has been so little communication from the hospital. It is very frustrating!

Overall, Mary seems to be doing well. She has made some friends and is learning some new coping skills. She is happy just about every time we talk to her. We have noticed that she still seems manic a good portion of the time... almost giddy. The nurses and counselors don't seem to notice that so much. They have said that she is engaging in the activities, and her behavior is very appropriate. What I don't think they realize is how good she is at maintaining control of herself in school type situations. Typically she will hold it all inside until she is in a safe place (i.e. home, our car, etc.) and then she can't hold it in anymore. She feels the pressure of being different and having everyone look at her while she is raging mad. She has had one visit to the "quiet room" and she doesn't want to go back there!

She has lots of questions about what will happen after the hospital. They are good questions. Unfortunately, I don't have very many of the answers because, again the lack of communication. What we THINK is going to happen is that she will come home on Monday, go to school for a special field day (which she has been looking forward to all year) on Tuesday, and then return to the hospital on Wednesday for what they call the partial hospitalization program (PHP). That schedule may vary a little bit as her class is supposed to go on a field trip on Wednesday and she would like to be there for that as well. So, she may not go back for the PHP until Thursday, but we will have to get the doctor's approval on that one. I am not sure how long the PHP will last. We have been told that they usually take it a week at a time, which gives them more time to observe her and more time for her to ease back into family/school life. Since we will be starting the middle of the week, I don't know if they will say just come the rest of the week and be done, or come for the rest of the week and the whole following week, or what? I guess it will all depend on how well she does at the adjustment.

She was funny the other night as she was asking me questions about PHP... she said that one child had been in PHP for 4 weeks already. She was concerned that she would not be allowed to go back to school to see her friends, and that with the PHP she would have not much down time or time to play with friends in the neighborhood (we have to be at the hospital at 8:30 and pick her up at 3:15, and then there is an hour travel time each way, so that is a valid concern!). I was trying to tell her that how long she has to continue the PHP is dependent mostly on how well her medications are working to help her control herself. If she was raging and losing control, then she was going to have to be in the program longer. She said, "Well everyone should be allowed at least one rage a week!" Oh boy! I tried to explain that if her medications are working properly, then she won't feel the need to rage. It is okay to be sad, mad, happy, etc., but to lose control like she has been is NOT okay. She asked if it was okay to lose control once a month? Once every 2 months? Okay, how about once a year?

I love that girl and can't wait to see her healthy again. To have her back home will be so wonderful. When I think of all that she has to overcome everyday to function, it just blows me away. I don't have her strength. Her compassion for others, for animals, for any living thing is amazing. She is my hero!

Wednesday, April 21, 2010

Notes to Self...

Sorry it has been so long since I updated everyone. It has been a really crazy 5 days with lots of trips (80 miles round trip) to the hospital, meetings with social workers, phone calls with insurance, etc., etc.

Here are just a few of my "top ten" notes that I have been trying to keep stored in my befuddled brain for future reference. Of course I hope that I never have to use them, but the likelihood of that is pretty slim. So, without further ado...

1) If at all possible, don't admit to a psychiatric hospital on a Friday or Saturday. Most likely the doctor that will be assigned to your case will not see your child until Monday morning and there just seemed to be LOTS of confusion, medical mix-ups, and bad communication between the hospital and the home.

2) Keep good records of the medications that have been tried prior to admitting your child to the hospital. If possible list the start date, dosage amount, side effects, benefits seen, and date stopped. And of course try to keep the list to 1 page so that the doctors can actually have time to read over it.

3) Try to stay flexible. Enough said on that one.

4) Try to remember that the end result will be worth the frustration.

5) One hour goes by so fast! Enjoy every moment of those visits.

6) Psychiatric wards and strings don't mix. They won't let you have any clothing with drawstrings, spaghetti straps, laces, or shoe strings.

7) Letters and pictures from friends are priceless! As is paper and pencils to be able to write back to them.

8) Those therapy dogs are great! It really cheers up the kids to be able to snuggle and play with a furry friend.

9) Accept any help offered with meals and childcare for the other kids in the family. Wow, have you all been great! I don't know how we would be making it through this week without your help.

10) Remember who is in control. He has our ultimate good in mind. He never promises that the road we walk will be easy, but He does promise to be there with us guiding us every step of the way.

My theme song for this week has been Jeremy Camp's song "There Will Be a Day". In fact that is the ringtone set on my phone for whenever the hospital or any of the doctors call. I do believe that there will be a day when we will have no more tears, no more pain and no more fears. I long for that day for my child. I know we won't see it fully here on this earth, but we have the hope of it in heaven. And I am so very thankful for doctors, medications, friends, and family who give us just a taste of what we have to look forward to.

Saturday, April 17, 2010

First Reflections

I am thinking a little more clearly than I was last night, so I thought I would take a minute and reflect back on our experiences yesterday and today. I still think that we have made the best decision. We were able to visit Mary today for an hour and she seemed overall happy and adjusting well to her new environment. She is making friends. She was really hoping to have a roommate, but doesn't, so this is a matter to take to the Lord in prayer. We are praying for someone that she can bond with and be able to form a good friendship with while she is there. There were a few things we were not happy about (and she wasn't either), but hopefully some good communication between us, our regular doctors, and the nurses on staff there has resolved those issues.

Now for my reflections on yesterday... my first impression when we got to her floor was that all of the kids there seem very "normal". It was like being in any camp/daycare type of facility except that the wards are locked down so you can't get in or out without a key and going through metal detectors and security. The kids seemed happy. The walls were painted bright and cheerful with colorful murals everywhere. It was not ANYTHING like I had pictured it in my mind.

We did over hear some group therapy going on while we were filling out the millionth piece of paperwork and answering the same question for the zillionth time. I think that the therapy will be intense and there will certainly be times when she doesn't like what they are talking about. But at the same time, I think that they purposely lead the kids down those tough roads so that they can learn how to deal with those bad feelings in a safe environment. It is not unlike some of the training we went through before we went to the mission field.

God is definitely trying to address my own pride these past few days. I did show up in the ER with Mary still in my pj's with no shower, makeup, or having even brushed my hair or teeth. They saw me at my finest??? NOT! For now, showers are a luxury that we may or may not have time for, makeup is useless because I will just cry it all off, and who has time or energy to worry about what I am going to wear or if my hair is fixed. There will be time for all of that later after she is healthy again. And my house will just have to suffer as well. There will be dog hair on the carpet and the bathrooms will not be cleaned. And I am okay with that!

So, there you have just a few of the million thoughts floating through my mind at any given moment. Overall I am at peace. God is good all the time, and all the time God is good!

Friday, April 16, 2010

Long Day!

Our day started out with a bang this morning with me chasing Mary down the streets of our neighborhood, praying she would not jump out in front of a moving car. We ended up calling 911 for help in transporting her to the hospital. That was by far the hardest call I have EVER had to make!

I am too drained and weary right now to post much, but the short story is that she was transported by ambulance to the nearest hospital ER where they did sedate her, draw her blood to check her medication levels and then had a psych consult. After several hours of waiting, she was transported to the closest psychiatric hospital that accepts children (an hour away from our home). Several more hours of waiting, lots and lots of paperwork, and she is safely delivered into their hands. She was comfortable when we left her. Walking away from that hospital was very hard, but we are trusting that we have made the best decision. We do not know how long she will be an patient there. It could be anywhere from 3 - 10 days, depending on how long it takes to stabilize her. And then we will probably have to be part of a partial hospitalization program where she will come home to sleep, but be taken back to the hospital during the day for all the therapy sessions, etc.

I will try to keep things updated on here as best as I can. Thanks in advance for all the prayers! I am trying to rest in the arms of the One who holds my daughter as well.

Saturday, April 10, 2010

Spring Break Week

Overall this has been a good spring break week. It has been really nice to sleep in a little later, play a little longer, and generally relax a little more. Mark and the older kids have been gone most of the week with the youth group on a trip. We spent a lot of time with friends and enjoyed going to the park (although all the moms were freezing), going roller skating, playing in the sprinkler, and eating Mayfield ice cream. We needed this break in the roller coaster ride, and I am very thankful for every good moment that we had.

Last week was not so peaceful... We had a psychiatrist appointment on Tuesday and Mary broke down twice while we were in seeing the doctor. Her blood pressure was low, her heart rate was really high and she was acting very confused and frustrated. By the time we got home, she was complaining of a headache and being dizzy and then before bed she said that her throat had been hurting. When I went in to wake her up the next morning, I was supposed to take her pulse and see what her resting heart rate was. It was really, really high and she said she had not slept all night because she had been having nightmares. She was also running a fever. I called the psychiatrist and she told us to stop giving her the seroquel immediately because that could be causing the heart rate increase. I took her to the family doctor and we got a few raised eyebrows over her heart rate being so high. Turns out she had strep throat, which could be dangerous because of the chance of developing a rash with it. One of the medications she is on can turn any rash into Stevens-Johnson syndrome which can be fatal. And her heart rate still should not have been as high as it was even with being sick, so we are staying off the seroquel and monitoring it. If she stops sleeping or her brain starts racing again, we will try the seroquel again.

She seemed to be handling the medication change okay, although today was a rough day again. I guess if I am honest, saying it was rough would be putting it mildly. I came as close today to calling 911 as I have ever come. It all started over an innocent sandwich (which we did not have, but she wanted!), and ended 2 hours later with our living room completely rearranged by a raging 11 year old, and her actually going into the kitchen and searching the drawers for a knife to kill herself. I am bruised and battered both physically and emotionally. I don't know if it is all the excitement of the past week, anxiety over going back to school on Monday, or if the medication has completely cleared her system and she is starting to cycle again? The next few days should give us a better idea... but maybe not?

Tonight I am reminded again that our lives are not in our own hands, but in the Hands of One who loves us unconditionally. And I am thankful for His plans and purposes in our lives, even when we don't understand them. I am praying for peace and stability, but resting in the knowledge that He knows best.

Sunday, March 28, 2010

Just Another Manic Monday...

Or in our case, Sunday. Sunday seems to be the day that everything really falls apart for Mary. I don't know why?

We had a relatively good week last week, in spite of our rough start. Things steadily improved Tuesday - Thursday. But by Thursday afternoon, she was starting to break through the medicine again. She told her therapist that she wasn't going to talk about whether her brain was racing because then the therapist would be helping her and she doesn't need help! That's grandiose thinking for you. She has been on edge, but able to control herself from late Thursday afternoon until this afternoon. Then she lost it again and was threatening suicide. In a way, this turned into a positive thing (if your child threatening to kill themselves can ever be positive???). At one point during her meltdown, I asked her if she really meant what she was saying about wanting to die. She told me that yes, she did, so I was able to broach the subject of going to the hospital to get her some extra help. After the "storm" was over I was able to talk with her a little bit more and try to prepare her for the fact that this might become a reality in the near future. Hopefully she got the message that we are not mad at her and if we take her to the hospital it isn't because we don't love her. Instead if we have to admit her to the hospital it is because we do love her and want to protect her in the best way we know how. I don't know how much of that sinks in at this point in time, but at least if it does happen, she won't be completely blindsided by it.

I am not sure if that is what the doctor meant when she told me that our tolerance for this is too high? Should we have loaded her into the car and headed straight to the ER when she started talking about wanting to die? It is so hard to tell, because right now the storm is over and she is back to being relatively happy. Of course we will continue to watch her carefully tonight and see what happens.

Some possible good news on the lab work end of things... there is a therapist that can possibly help her work through the issues that she has with this. Unfortunately, he is in Atlanta and we will have to go once a week for probably 3 months or more to get her to the point where she is able to tolerate it. It will be well worth it in the long run, but will be challenging to say the least to try and fit that into the already hectic pace of life. Since it is going to take so long to work through these issues, I am assuming that we will need to have the dentist do the conscience sedation for the time being and hopefully that will also help her realize that it isn't as big a deal as her mind has made it into.

So, I guess for now, you could say that we are still in a holding pattern for the upcoming week. We have a doctor's appointment on Tuesday, which will hopefully go well. I am so thankful for friends and family and their words of encouragement to us. You all are blessing us in so many ways. I am continuing to pray for peace and stability for Mary, but trying to remember that His plans are best, no matter what the circumstances look like from our point of view.

Tuesday, March 23, 2010

Making Preparations

This morning the sun is shining and the temps are supposed to warm up a little bit. It does my heart good to see the sun and anticipate soaking up a little of it's warmth. If only the rest of life could be like this sunny morning.

Yesterday I spoke with our psychiatrist. She was concerned at the escalation of the bipolar cycling and our inability to stabilize Mary. Her recommendation was that we consider hospitalizing Mary. That is such a tough thing for me to wrap my mind around. We are in a holding pattern right now, hoping that this last increase in medication dosage will make a difference or at the very least buy us a few days to prepare the household for this difficult situation. I spent the day yesterday cleaning like a mad woman and getting stocked up on groceries, just in case. Today I am going to be looking into what hospital we would want to put her in if the need arises, lining up childcare/carpool/etc. for the other kids, and cooking a few meals to stick in the fridge. Something the doctor said to me keeps resonating in my mind... she told me that the longer we let this cycling continue, the harder it will be to bring it under control. And she said that both Mark and I have a high tolerance for dealing with these issues, but we need to realize that we can't let it continue to go on like it is. I am one of those people who will say, "well if it gets any worse, we will go." I need to realize that the idea is to not let it get any worse. If it stays as bad as it has been the past few days, we need to go. If we don't see improvement, we need to go. It doesn't have to get any worse to justify taking her to the hospital. I am not sure at this point what the goal of putting her in the hospital is? Maybe once I understand that a little bit better I will be more at peace with it and better able to move forward...

Another issue we are preparing for right now is the need to have some blood work done on Mary. Because of the medications that she is on, we need to regularly check her liver and kidneys among other things to make sure that there are no negative side effects starting to happen. The last thing we want to do is cause more medical issues for her already stressed body. Unfortunately, Mary has been extremely noncompliant about having her blood drawn. That is an understatement, let me rephrase... there is no way in &*$#*% that she is going to let anyone near her with a needle. You get the picture. She can't even be in the room when someone is talking about drawing blood without having a panic attack. Okay, so how do we get blood from an already traumatized 11 year old? Our solution right now is to put her under conscience sedation and have it drawn then. Of course this brings on a whole new set of things that need to fall into place in order for this to happen. Our doctor's office is not set up to handle that type of procedure, and neither is any doctor's office or urgent care clinic in our area. The ER can do it, but they would rather just hold her down and get it done. And who wants to go to the ER???? Not me. Can't see that being a pleasant experience every few months! Thankfully we have a great dentist who has agreed to do the procedure for us, at least this once. Our next big hurdle will be getting the insurance to pay for it. As of right now, they have said that it is not covered and we will have to pay for it out of pocket. OUCH!

I have to say that my control idol is really being threatened right now. I want to control everything that happens to myself and my children. I want to have everything in place and lined up for all the "what-ifs" in life. I find my peace when my world is planned and regulated and controlled by me, not in trusting that God has control. Can I trust Him with this? It boils down to my own unbelief. Of course God can handle this. He didn't overlook something or step down off His throne for a minute and this slipped by Him. But does He care enough... like I want Him to care? I did spend quite a bit of time yesterday while I was cleaning just cussing God out and telling Him how unfair all of this is. I trust that He is able to stand up to my anger and love me anyway.

I am realizing that my biggest preparations today should not be for all the physical things that may or may not come our way. So, I plan to spend the day preaching this truth to myself... He does care, He does intervene, He does pave the way, He is trustworthy, He is in control and I can trust that He will hold us when the ground beneath our feet crumbles... Because I really need to hear that today!