Friday, December 14, 2007

Ask the Doctor

I had one of those confusing days yesterday. I couldn't even sort things out enough to write about my specific questions. But today I was able to call Dr. T at NIH and ask him some very specific questions. His answers have helped me understand things better and eliminated much of my confusion. I thought it would be good to write them out here so that I have things written down and so that those of you who are interested in more specifics can get some information this way.
Bear in mind Dr. T's answers are the best I can remember and are coming through the filter of my brain, but it's what we have to work with.

Q: Yesterday Cadi had some pretty bad behavior but couldn't seem to understand that her behavior was tied to the consequence of losing privileges which she was indignant and angry about. The phrase "Everything I do you blame on me" sums up her attitude and the extent of her understanding of the situation. It seems like she is missing some important connections here. What do you think this is coming from?

A: There are some areas in which Acadia is developmentally immature, and other areas where she is on target, or close to target for her age. This is one of those areas where she seems to be immature. You would expect this kind of thinking and behavior from a four year old, but not a 9 year old. Acadia has a social deficit or immaturity in her understanding of responsibility for her actions.

Q: You have mentioned anxiety as a probable cause for Cadi's anger, irritability, and oppositionality. In your experience with other kids, have you seen anxiety present this way?

A: Yes, often. I can relate it to being like a timid animal. When you first approach it, it will run. If you get closer, it will freeze. If you try to touch it, or force it to do something, it will fight. When Acadia is faced with something she is being asked to do, she is not saying, no, I can't do that because it's too hard or too scary for me. She struggles with that capability to express intense feelings with words when she is in the middle of them. She is just fighting, desperately.

Q: We've talked about Acadia having a developmental language problem in not being able to express things using language. What about the times that she has talked about her feelings, such as in a therapy session where she is motivated with candy?

A: The fact that she has to be motivated by a piece of candy for each sentence, actually demonstrates that this is a problem. Food is a very base level motivator, we use food to train animals to do what we want them to. A 9 year old should be able to volunteer at least some basic information about their day or their week, and then maybe work towards more expressing more personal feelings, but shouldn't have to have such a base level motivator to use language.

Check the Care Page for more about Cadi's status, meds and our plans.

Time to make a quilt!

For generations, the women in my family have made quilts. We have made baby quilts, and quilts to pay the midwife for delivering babies. We have made cozy comforters and beautiful wedding quilts. We make quilts to show our happiness, our gratitude, our acceptance and love, our compassion, and prayers. It is an all out project, something you must throw your whole self into. Something you ignore the housework to finish, and hurry to meet the deadline. You feel like you are doing something, even when there is nothing you really can do. When we finish, we vow not to do that again for a long time. At least until our hearts are full or breaking again. Then we will pour them into the washer with the new fabric and soap. We will wash, dry, and iron out all the wrinkles that we don't understand. We will cut them into pieces that make sense, that follow a pattern. We will piece them together to express our love and our hope, and feel like we are beginning to arrange our deepest thoughts and feelings. When all is done and sewn we oooh and ahhh and show everyone that comes in the door. We did something, and it's beautiful. Then we fold it up and take comfort in the bigness of it, the weight of it in our arms relieves the weight in our hearts. We give it away, the way we give our love to those who will cuddle up in the quilt.

This is Acadia's quilt. I helped make it, but it wouldn't have happened without Alan and Reita's help. They stepped in and became my quilting family this time, and I am so grateful to them for doing this with me.

The Psalm 139 Mermaid Quilt has verses from Psalm 139 illustrated by a little mermaid stick figure who is thinking about the presence of God as she "makes her bed in the depths", "travels to the far side of the sea" and "numbers the grains of sand".

Here is the quilt on Acadia's hospital bed ready to comfort her and remind her of the presence of God no matter where she is or what she is feeling.

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Craving Answers

I have gone through Thanksgiving and the Cawley Christmas party without a mixer. I got my husband to whip the cream with a whisk and I made frosting in the food processor. It was not perfect but it was okay. I also went through Thanksgiving and the Cawley Christmas party without Acadia. Of course it was easier, I didn’t think too much about it, and it was okay. But if I do think about it, it’s not okay, it’s awful. I do sometimes feel guilty about leaving her there. Not the kind of rational, believable guilt, just the aching that feels like it must somehow be wrong. Especially when she calls, like she did tonight, and begs to come home. She said it’s the most horrible place in the world.

The thing is, as much as it hurts to hear her so upset and homesick, she has said all of those things about home too. I am pretty sure that if she was home right now, she would be fighting me and calling me stupid and cruel like she is doing to the nurses tonight. So I know that home is not THE answer, although I want her to come home as soon as possible. THE answer, of course is not just one answer, but I am feeling rather confused again and wanting more definitive answers. That is, after all, why we are doing this whole thing in the first place.

Thursday, December 6, 2007

WARNING: flags

I'm brooding. So much so that I took a picture of myself brooding and now I'm going to blog about it. I have my pathetic moments.

That being said, the document in my hand is a 25 page detailed account of Acadia's moods and behaviors for 2003-2004. The fact that I have this information documented proves that I was more desperate for answers for Acadia than I was depressed, and so I wrote down whatever I could whenever I could. The good thing is that I have all of this to help me now. Cadi's doctor at NIH requested some more information surrounding her experience with Prozac. And I have it. The little green flag says Prozac. The orange one Wellbutrin, the pink one Depakote, and the green one you can't see, Ritalin. These are not only post-it flags to me. They are bright warning flags. WARNING: this is a powerful drug that can alter your child's brain. WARNING: even though this drug has worked for many other children, it will not work for yours. WARNING: you have only begun the list of medications you will try in your desperate attempt to find help for your child. WARNING: your child is very ill and needs help. WARNING: all these warnings mean nothing, three years from now you will still be looking for help and searching for answers.

Don't get me wrong. I am not against medication. And I have always guarded against putting my hope in a magic pill. My hope is in God. But I am at one of those turning points again. A new chapter is beginning in our saga and as I read through the old chapters they look sadly familiar. "Wow, she was doing that when she was four and she is still doing it?" Acadia is totally off medication for the research program, and she has even had things start again that we hadn't seen for a couple of years. She is chewing on everything again, constantly. She is very hyper and distractable. They say she is a different kid from the one who arrived a month or so ago.

I am going to see her tomorrow and mother her the best I can in this situation. I am going to hand this flagged document to the expert and put a little bit of my hope in the possibility that he will have some answers for me soon. If he doesn't, if the new meds still don't work, then what? We will go on. Our therapist says we can't go on like we were, but if that's what we have to do then we will. Sometimes you don't get to make that choice. We will go on living and loving as families do; always looking for whatever help comes next, in whatever form that takes.
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Wednesday, December 5, 2007

Reformation Day Faire October 31, 2007

We went all out celebrating the Grace of God at our Reformation Day Faire this year. It was a lot of work but I do love to throw myself into a big creative project, and it was great to watch the kids having so much fun! They played games related to the life of Martin Luther and earned coins to trade for candy at the marketplace.
Some of us dressed up in medieval costumes, but we had some fairies and spider(men?) too. Acadia was an archer, and Lily was a princess. Unfortunately I erased the pictures I took of my girls in their costumes. Arggh! Sometimes our memories have to come from something other than pictures, right?

Celebrating Reformation Day is so much different than trying to ignore Halloween, or having a "harvest party" instead. We are not saying "Yeah, everyone else is doing something fun tonight, but were not doing anything because it would be evil". Instead we are telling our children "We have something important to celebrate tonight, and it's different from what the world is celebrating. The Grace of God is so important that people gave their lives to make sure that you could know and understand it."
The Bible and Jewish culture are full of feasts and celebrations and the Lord wants to celebrate with us! I think it is no coincidence that Reformation Day has been hidden behind Halloween for so long. October 31st was the day that Luther posted the 95 theses on the Wittenberg door. The ring of that hammer has echoed through history as the reformation was born. But as Christians we tend to focus too much on the evil we want to avoid, and not enough on the fullness of all that we have in Christ. "The just shall live by FAITH" was the simple truth that changed Luther's life and then the whole world. And it's a very good reason to PARTY! Whoohoo!

The little bumble bee was fascinated with the "fire".

No, it's not Snow White's wicked stepmother. She doesn't have that evil white complexion. It's a medieval queen of course!

This was the guy you were supposed to avoid. John Tetzel. He went around selling "indulgences" which were pieces of paper that said your sins were forgiven. Yep, you could pay your hard earned coins to BUY God's forgiveness. Sound kind of twisted to you? Good! Martin Luther thought so too and this was one of the things he spoke against in his 95 theses. Of course you can't BUY God's forgiveness, but many people in Luther's time did. And I'm sorry to say that many of our kids fell for it too! We had to start warning them not to buy anything from that man with the papers! ( I drilled my own kids at home later, "No Mommy, we didn't buy any!")

Tuesday, November 20, 2007

Two Week Update

Acadia has been at NIH for two weeks now, and yes, it has taken me this long to get around to updating everyone. I can't really think of an excuse except that maybe I've been trying not to think about it too hard. And that's kind of what blogging is all about.

The first two weeks went by quickly and without incident. Cadi sounded really good on the phone, and especially after decreasing one of her meds, she seemed to brighten up quite a bit and was more talkative. The nurses reported no problems with her and were impressed with how she had warmed up and made friends with the other kids. A 9 year old boy arrived a few days after Cadi, and they quickly became buddies. She's also become good friends with a 13 year old girl and they play, draw, and laugh together. God has been so good in matching these kids up to be there at the same time. It has made a big difference for all of them to have friends while they are away from home. I've also been able to meet all of their parents and had a chance to spend some time talking with one mom while we were staying at the Children's Inn. The Inn is set up to be a "home away from home" for children and their families, and the kids really take that to heart by making friends quickly and running around like they own the place! While I'm curled up in a chair by the fire talking to another mom who's daughter is in the same unit as Cadi, the girls are giggling and playing with toys in the play nook under the stairs, taking a break from being patients and just being kids. It's such an amazing place and I am giving God all the glory for providing it and using it to meet our needs and show us his love during this time.

At home we took a collective deep breath and Lily and I spent a lot of time just hanging out and having some much-needed time together. We made some videos of things we've been doing and I'm going to try to post them on here soon.

I just got back last night from a visit with Cadi. We had a good weekend, stayed at the Children's Inn, went shopping, saw a movie, and played games together. She started getting a little sad at times, thinking about me leaving again. I took her back to the unit on Sunday night, and the next morning she was sad and refused to do her schoolwork. She went to the corner and cried. A nurse talked to her for awhile, and then she went to her room and got her turtle batik that her therapist at home had given her. She wrapped up in it and grabbed her panda and her chewy toy and went back to the school room and finished her work. I saw her later in the morning and she was doing better. We played a game and then I had to leave. She gave me a hug goodbye, and seemed okay with me leaving. The nurses reported that Cadi had a great afternoon, was even bubbly and talkative, and had a great time playing video games with the other kids that evening. But when it came time for phone calls she didn't want to call anyone and then got sad again and refused to take her meds. They worked with her trying to get her to talk about what was bothering her, but she just kept crying and refusing to take her meds. After awhile she agreed to take them and they got her calmed down and into bed.
Even though it's really hard for me to hear all this, I am actually a bit relieved that she is finally letting her real feelings show. We want her to feel safe and comfortable enough there so that she isn't hiding anything. She is coming off her medications so we may see more of this kind of thing as we go along. The great thing is that she is actually using some of the coping skills her therapist and I have been working on teaching her for years and she is learning to talk to the nurses about what's bothering her. I am really proud of her for that.
I'll try to post updates more often and let you know what's going on. Keep praying!

Saturday, October 20, 2007

Friday, October 19, 2007

"...strengthen me according to your word." Ps 119:28

I've been holding back the tears. I take deep breaths and think about God's word. He whispers to me phrases from scripture, mostly from Psalm hem me in behind and know when I sit and when I perceive my thoughts from afar....where can I go from your presence...all my days were ordained by you before one of them came to be.... and I remember that these are true for Acadia as well.

How do you fly your child to another state, and then fly back without her? How do you leave your daughter with strangers? How do you go on with life without your child, when your child has been your life??? I don't know the answers. I only know that God has opened a door that we have decided to walk through and I don't know what's on the other side. There is one thing that I cling to: He will be there with her. He will hold her and never let her go. She will be hemmed in by the presence of the God who made her and knows her best. She will be okay. God's plan for her life is not about me anymore. In fact He apparently has a plan for her life that needs to happen away from me for awhile. I know all this. But it's hard to swallow.

Acadia will be starting the research program at NIH around the first week in November. It's the best care she could have at the best hospital in the world. We couldn't ask for anything more, except to be together. But we've been together and that hasn't been working. She needs more. And God has given us a way to give her exactly what she needs.
He will give me what I need too.

Monday, October 15, 2007

Will today be the day?

I spent an hour fighting with Acadia to eat something. She hates breakfast. Especially when she gets up early and sneaks a cookie or something. She got very angry and aggressive. I worked on calming her down, but as soon as I got her calm she'd refuse to eat or take meds and get out of control again. She hit Lily in the stomach, and then apologized and said it was an accident because she didn't "mean" to do it. I finally got her to say that she would eat a pear, but there was only one left and Lily had already asked for it. So I got out a knife to cut the pear in half, and Acadia started screaming, "No, don't do it, don't cut the pear, I don't want it if I can't have the whole thing!" She was grabbing my arm and pulling on me. I carefully put the knife down and went to check with Lily that she still wanted some. Of course she did. I turned to go back in the kitchen and Acadia threw something at me. I ducked. Are you thinking what I'm thinking? It wasn't the knife, it was a paintbrush. She has, so far, always grabbed the closest thing to her, but never anything sharp. Thoughts began flashing through my head, is she going to grab that knife? Is today going to be the day? Are we even going to make it to Maryland, or am I going to have to admit her here? She didn't do it. I cut the pear, she took it, and went into the livingroom. She watched Sesame Street while she ate her pear.
Now she's obssesed with packing for the trip. Meaning she is intensely focused on only that one thing she wants to do, and refuses to do anything else. She's highly anxious and agitated and can't stop. Can't stop moving, can't stop thinking about packing, can't do anything else. What I wanted to do was morning routine, schoolwork, packing. But she can't think or focus, so I had to do morning routine, packing, and schoolwork if we can. She got her routine done (phew!) and took her meds (praise God) Right now she is tearing around trying to find clothes to pack, and ignoring my suggestions and offer to help. She's yelling at her packing list. We have to go pick up the car at the garage so that we can get her backpack. She's really mad about not having her backpack to pack RIGHT NOW. Oh yeah, I have to get me and Lily packed too. I better get going.

Sunday, October 14, 2007

You might have a bp kid if ....

  • Your house resembles Martha Stewart's new address and not her old address.
  • You have the psychiatrist on speed dial.
  • You've had to change pdocs more often than your child changes clothes.
  • Your neighbors HAVE to know your business.
  • You have holes in your walls and doors coming off the hinges, but that's the last thing you're worried about.
  • Your friends are worried about dinner parties, while you're worried about getting your child to eat something for dinner besides just carbs!
  • Strangers feel the need to tell you how they could raise your child better.
  • It takes a psychiatric consult to find out what med is safe to give your child for the common cold.
    Your neighbors children have soccer practice 2 days a week, your child has therapy appointments to learn relaxation techniques instead.
  • While others safety proof their homes for their toddlers, you still have to safety proof your house for your teenager.
  • You're an expert at drywall repair.
  • The people in Walmart see you coming and run for cover!
  • You drive like you're 100 years old for fear of an object being hurled at your head.
  • You have more doctors and hospitals programmed into your cell phone than you have friends.
  • You're on a first name basis with your pharmacist.
  • Instead of passing condescending looks, you're sympathetic when you see a mom with another child who is raging in public.
  • You're more concerned with the wars at home than overseas.
If you have a kid with bipolar disorder, I just found this fantastic online picture book for kids about big feelings!

Friday, October 12, 2007

“The greatest ignorance is to reject something you know nothing about”

I have an idea. It's an assignment for everyone who has an opinion: Define mental illness. That's it. But here's the catch; it's a closed book, closed screen test. You do have a life line.... a phone-a-friend who has a close family member with a mental illness. Don't know anyone? You probably do, but you don't know it yet. Start asking questions. Start with depression. Does anyone you know live with someone who is depressed? No, you can't open your Bible and see where your finger lands, and you can't raise your hand and ask your pastor who has all the answers. You have to ask someone who is hurting. The person who's been there, done that, and wears the T-shirt, because it's the only one clean.

If the subject comes up before you get around to this, you don't have an opinion. Period. You can tell us about the moccasins after you've worn them for awhile. Until then, please just keep your mouth closed. Once you do get a chance to ask someone what it's like, then you may open your book, The Book, and read about Jesus' compassion for people who are sick, lost, and rejected by those around them. Write your definition on tear stained paper only, please. Put it in a folder labeled "someday", and review it if mental illness ever comes to visit your family. One in five families in America deal with a mental disorder of some kind.

After you use your phone-a-friend, you might find that the person on the other end is someone who needs a life line too. You might even find that by talking about the struggles of life together, it doesn't matter anymore what kind of struggles they are. Only that there is grace for each of us in this moment. Not because mental illness doesn't exist, but because God does.

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Monday, October 8, 2007

Mental Illness Awareness Week

In recognition of Mental Illness Awareness Week, I've been posting about the topic a bit more generally than I usually do. I've also had the reality of mental illness come up in discussions lately. Here is a beautiful prayer I found on this website:

A Mother's Prayer for Mental Illness

As I stumble from my bed this morning, help me to remember to be gentle and kind.
My child's mind is shredding into a million pieces. He lives in a constant state of atrocious fear. I can see it in his eyes. Give him peace.

Guide me as I hold him in my arms. Help me to know what to say. What to do. Fill my heart with healing love, understanding, and empathy.

Give me the strength of a thousand angels to hold back my tears. My heart is broken and a tidal wave of grief is overwhelming me with the need to cry. Give me the strength to bear it long enough to keep it from disturbing my child. Help me find someone I can safely bring it to.

Help me answer my family's questions with the same amount of compassion I would want for my self. Help me remember they are hurting too. This is an unwelcomed assault on an entire family. My heart is not the only heart that is broken. We all need time and each other to heal.

As my journey becomes more and more isolative and lonely, remind me that the lack of involvement on the part of family and friends is not always because of the stigma and the ignorance. For many, it is because they are hurting too. They have the privelege of turning to their own lives. This is my family's life now. I must deal with it whether I am hurting or not.

Send me your best physicians and healers. Give me presence of mind, as I walk through the exhaustion of my grief to not settle for just any one no matter how tiresome the journey becomes.

Help me adjust to the idea, that although it appears my son is gone, there will be no goodbye. And that he is still inside somewhere waiting for us to find him.

Infuse the creative part of my mind with solution oriented thinking. Give me hope. Even if it is just a glimmer of hope. A mother can go for miles on just one tiny glimmer. Let me see just a flicker of the sparkle of joy in his eyes.

Guide my hands, calm my mind, as I fill out the multitude of forms for services. Then help me do it again over and over.

Provide me with the knowledge. Lead me to the books I need to read, the organizations I need to connect with. As you work though the people in my life, help me to recognize those that are here to help. Help me trust the right ones. Shine a light upon the right path.

Give me the courage to speak my truth; to know my son's truth. And to speak for him when he is unable to do it for himself. Show me when to do for him what he is not capable of doing for himself. Help me to recognize the difference.

Help me to stand tall in the face of the stigma; to battle the discrimination with the mighty sword of a spiritual warrior. And to deflect the sting of blame and faultfinding from the ignorant and the cruel.

Preserve my love for my family. Shield my marriage with the wisdom of the love that brought us together.

Protect him from homelessness, loneliness, victimization, poverty, hunger, hopelessness, relapse, drugs, alcohol, suicide, cruelty and obscurity.

Lead us to the miracles of better medications, better funding, better services, safe and plentiful housing, meaningful employment, communities who care, enlightenment. Help us to find some way to replace all the greed with humanitarian work and intrinsic reward again.

Most of all, give me the strength to deliver whatever I can to the work of unmasking the man made ugliness of this disease and revealing the human and all of it's suffering beneath.

Finally, when it is my time to leave my son behind, send a thousand angels to take my place.

It is better to light a candle than to curse the darkness.

Here are some common Myths about mental illness from Parenting with a mental illness:
  • People who have a mental illness are just "crazy"
  • Depression and other illnesses, such as anxiety disorders, do not affect children or adolescents.
  • People with a severe mental illness, such as schizophrenia, are usually dangerous and violent.
  • Addiction is a lifestyle choice and shows a lack of willpower. People with a substance abuse problem are morally weak or "bad".
  • Electroconvulsive therapy (ECT), formerly known as "shock treatment," is painful and barbaric.
  • People with mental illness are poor and/or less intelligent.
  • Mental illness is caused by a personal weakness.
  • Mental illness is a single, rare disorder.
  • Mental illness only happens to people with a family history.
  • Mental illness is the same as mental retardation.
  • People with a mental illness are unable to function well.
  • Depression and anxiety disorders are part of growing up.
  • Mentally ill employees tend to be second-rate workers.
  • Post traumatic Stress Disorder (PTSD) happens only after you fight in a war. That's why it's called shell shock.
  • Depression is all in your head.
  • Mental illness is the result of bad parenting.
  • Schizophrenia means "split personality," and there is no way to control it.
  • Mental illness does not strike the "average person."
  • Mental illness is not a serious health problem today.
  • Most people with a mental illness are receiving treatment.
  • Mental illness is not like other "Physical" diseases.
  • Most people who are mentally ill live in mental hospitals or on the streets.

Fact: Don’t be too quick to judge. Someone you knows suffers from a mental illness.

Saturday, October 6, 2007

Seeing is believing? Research and Bipolar.

Research is not at the point where we can link Bipolar disorder to one particular gene, or do one brain scan to see what's going on. The fact is that mental illness is much more complicated than other diseases that we can see, but that does not mean it doesn't exist. It means that because the brain is so amazingly complex, it takes a lot of research to target things like brain differences and genetic roots.

We do need this research, not to prove that bipolar exists, but in order to diagnose and treat people better. Which is why in two weeks my daughter and I are flying to the National Institutes of Health to participate in a research progam they are doing with kids with bipolar. We are doing this for better treatment for my daughter first of all, and then to advance the frontier of medical research. It is research that was needed yesterday.

There comes a point when you have ruled out every possible external cause, and you must look at the possibility of mental illness. Even though the research is not there yet, my child is. She doesn't look different, but she thinks and feels differently. And that is no less valid.

Here is some progress that's been made in research recently:

Genetic Roots of Bipolar Disorder

Bipolar Youth Show Distinct Pattern of Brain Development

Wednesday, October 3, 2007

My Life-window

I saw this spread out on the table this morning and thought,
wow that's like peeking in a window at my life!

Here's the breakdown:

Coffee: Made fresh this morning by my husband who loves me and shares his life and his coffee with me. Also the elixer of life to get me through my day.

Bible: My relationship with God is so important and His word sustains me. In Him I live and move and have my being.

Math book: Homeschooling my kids is so challenging and rewarding. It's one of the things I value most, my responsibility as their teacher in life.

Pink sticky notes and pencil: I forget everything. I have to write notes constantly to keep up with life. These two are about music for our church praise team, and phone numbers and flight schedules for going to the NIH for an eval with Acadia.

Papers: I could drown in papers and laundry at my house. I have so much paperwork to do to stay on top of things for Acadia. This is a prescription and a form I'm filling out.

Small vase: I do value order and beauty, but it's a small priority for me right now. This is a sprig of some plant that we saw on our nature hike. It is a beautiful ground cover and I want to look it up and see what it is and if it would grow in our yard somewhere.

Window: In the background is my dining room window. You just got a good peek into what my life is all about!

Tuesday, October 2, 2007

Worth It All

I am all about faith that is real in the midst of pain. "Life is pain, highness." as the line goes. My God is big enough to handle it. His love is deep enough to heal it. This song communicates the love of God in an amazing way.
This is my favorite part:
"You’re a masterpiece to me…Only I can see
That underneath the hurt and the pain
Is a picture of me"

It's so important when we are dealing with people who have been hurt badly or are badly hurting, to see them (and ourselves) as having been created in God's image and in the process of redemption. I revel in this Grace.

Saturday, September 29, 2007

Watch out web, here I come!

I came across this post by Israel Wayne entitled "Bipolar or Sin?".
It was already bedtime, but I couldn't let this one go without commenting. If you click here
you can read his blog post and my LONG comment at the end. Now it's really late, but I've done my advocacy work for tonight!

Lily and a friend

Lily made friends with the neighbor dog, Molly.

Molly is an old chocolate lab who gets lonely when her people are at work. So Lily, apple in hand, decided to spend some time cuddling with her. Our other neighbors have 6 puppies that keep escaping into our yard. The other day Dan found one playing with the toys in the sand box! It's nice to have neighbor dogs though, since we can't (and don't really want) one of our own due to allergies.

Acadia's first soccer game!

Acadia had her first soccer game today, after only one practice! It was a round-robin tournament so they actually had to play 3 games! They didn't score at all, but Acadia was such a good sport. She had fun, played hard, and was ready for another game when it was over! We are so proud of her.

Just try and get that ball past me!

What a beautiful day for a game!

Thursday, September 27, 2007

In My Arms

This song spoke volumes to me yesterday. It's for Acadia.

Your baby blues
So full of wonder
Your curley cues
Your contagious smile
And as i watch
You start to grow up
All I can do is hold you tight

Clouds will rage in
Storms will race in
But you will be safe
In my arms
Rains will pour down
Waves will crash around
But you will be safe
In my arms

Story books are full of fairy tales
Of kings and queens and the bluest skies
My heart is torn
Just in knowing
You'll someday see
The truth from lies

When the clouds will rage in
Storms will race in
But you will be safe
In my arms
Rains will pour down
Waves will crash around
But you will be safe
In my arms

Castles they might crumble
Dreams may not come true
But you are never all alone
Because I will always
Always love you

When the clouds will rage in
Storms will race in but you will be safe
in my arms
Rains will pour down
Waves will crash around
But you will be safe in my arms

Wednesday, September 26, 2007

An experiment in self-control

She can't control herself or she won't control herself? That is the question. Unfortunately, it's not one we can actually answer. So sometimes I lean too far in one direction or another in parenting Acadia. That's what I did this morning with disastrous results.

, when Acadia gets out of control (violent, destructive, dangerous), I take her (one way or another) to a small room that we call the calm room. The walls are pine so she can't destroy them, there is a big cushion on the floor for her to flop on, scream into, punch, whatever. There is a plexi glass window that lets in light from the kitchen, a light on the ceiling that she can't smash, and a door that locks on the outside. It's small but safe. The problem is I feel terrible that I have to put her in there. It feels wrong to lock your child up, even in a nice room for a few minutes until she calms down. I want her to learn to control herself, what if putting her in there is just teaching her that she can't control herself without being contained? What if she's just getting violent so that I will stop her and control her, so that she doesn't have to try to control herself?

This morning I explained to her that I wasn't going to put her in the calm room today. If she was destructive, she would clean up and pay up. If she was violent, Lily and I would go to another room where we could be safe. I told her that I wanted her to stop herself and that she could ask God to help her with that. I said "When you start to get angry..." she interrupted "I don't start to get angry, I just am angry all of a sudden." "Okay, when you are angry, you need to work on calming yourself down, tell God that you can't control yourself and you need His help." She just laid on the floor and said nothing. Then she laid on the couch and said nothing. Then she got up and got on the computer which hadn't logged me off yet. I came over and logged off, and she exploded. She started attacking me and throwing stuff. So according to my "brilliant new plan" Lily and I went up to my room. Behind me I heard Cadi throw a glass across the living room and it shattered on the floor. In my room I sat down and held the door shut and Lily happily ate her snack and looked at a National Geographic. Acadia went ballistic. She beat the door with stuff, and threw everything she could find at it. Squirted water under the door. Screamed, cried, pounded, etc, etc. After a while Lily said, "Mom I'm tired of being in here". I said to myself "Yeah, what was I thinking, lock up the safe child and let the unsafe one roam free? This is really nuts." So I called my mom and asked her to come help me.

Mom had planned for months to take Noah on a field trip today. But Noah broke out in some kind of weird virus with spots, so they decided not to go. She had said to Dad last night "Why does this always happen when I try to plan some sort of field trip?" Dad said "I guess God just has other plans for you". So Mom was home and came right over. Meanwhile I opened my door and let Lily go play. Acadia came in and crashed on my bed, sobbing. I just held her on my bed for awhile, even though she was trying to get away from me the whole time. She cried and said that she just wanted to be normal. I tried to ask her what kind of normal, but she couldn't talk about it, just kept crying. When Mom arrived she came in and got Acadia to calm down, take her meds and have some breakfast. I went down and cleaned up the broken glass. Mom helped Acadia clean up the rest of the messes she had made, then let her go outside while we talked and finished cleaning up the kitchen. I told Mom what had happened and she said the problem was that Acadia felt totally abandoned when I left her. It was if I took away her only hope and left her completely alone with all her big scary feelings. I asked Acadia if that's how she felt and she said it was. I told her that wasn't what I meant to do, and asked her if she would forgive me for that. She said she would. I asked her if we should just use the calm room next time and she said yes.

Mom took Cadi with her and was going to have her do schoolwork at her house. I got to have some time by myself to calm down and regroup before I take her to Bangor for therapy. Writing this blog seems to be working to get my thoughts under control and my emotions in check. I want to call myself a failure, but I know that I was just trying to figure out what was best, and made a mistake. In spelling, I tell my girls that mistakes are just opportunities to learn. I guess Acadia and I had some things to learn today. My Mom is God's heavenly assistant, otherwise known as an angel. She is one of the reasons Acadia is not in the hospital today. And I am Acadia's self control. Like it or not, that's how it is right now. I am the one who needs to pray for the Spirit's power and guidance. He will not abandon me, and I will not abandon her.

The research program at NIH

Last night the research assistant from NIH called me back. She said they are inviting us to bring Acadia to Bethesda, MD for a one-day evaluation, after which they will decide whether to invite her to participate in the research study. If they do, then we would need to make the final decision to go for it, and stay for four more days to finish the initial evaluations. They provide airfare and lodging for us at their Children's Inn.

So we discussed all this last night. We agreed that the first evaluation we can definitely do; even if they decide Cadi's not right for the study, she and I wouldn't mind taking the trip and doing the evaluation, we're pretty used to those. As for the rest of the study, that's the difficult part, because Acadia would need to be admitted and stay down there. What they do is taper her off all her current medications, do testing, brain imaging, and evaluations on her un-medicated brain, and then stabilize her on medication again, either the same or new medications depending on what she needs. This whole process takes between 2-3 months. She would be able to leave the hospital if she was stable and safe enough on nights or weekends, but would have to be there the rest of the time participating in the day program. There are no more than 3 kids doing this program at a time, and they provide a very structured program for them with tutoring, various recreational therapies (pet, music, art, etc.), daily meetings with the psychiatrist, a personal nurse, a point system for behavior, and plenty to keep them busy. Airfare is provided for parents to visit every two weeks, but we figure we can work with that a little bit.

Actually are a lot of logistics to work out, but if we do this, we are going to figure out a way to make sure that no one in our family is completely abandoned. We all need each other, and we are going to have to sacrifice our family life to do this, but no one is going to be left for 3 months. God can bring us through this without it being a destructive thing for our family. This is our greatest concern about the whole thing. We have no guarantees that this will be the answer for Acadia, or that everyone will do just fine with the separation. All we have is the promise that God, our Creator, and the Lover of our souls, will be with us, working all things for the ultimate good, will be close to the brokenhearted, will meet the deep needs of our souls for family, will keep working in each of us to make us more like Jesus, and will do all things for His glory.

Wednesday, September 19, 2007

Kissed by Blackberries

My dear friend Anna reminded me of this experience I had this summer, with one of her blog posts. This came out of reading "Captivating" by John and Stasi Eldridge. I'm posting my comment to Anna here:

I read this chapter you were discussing. I was quite moved by it myself. The author challenges us to invite God to romance us, and then to watch what He does. When I finally had an afternoon without children, I grabbed my bible and journal and went for a walk through the woods. No sooner had I stepped from the edge of my everyday lawn, into the rare invitation of the woods, I saw a few beautiful ripe blackberries. I gasped, prayed and ate them. They tasted like love. Sunshine, sweetness, providence, satisfaction, tender love. God kissed me with blackberries and I walked with Him for awhile, praying, crying, writing, being romanced. So it was true. He was waiting. Why are we so uncomfortable with that? Why do we take Him up on His offer so rarely?

Tuesday, September 18, 2007


The tide is high and the swing is up today. The problem is it took me the whole day to figure this out. This morning school was kind of rough, Acadia was dropping or throwing her pencil every two minutes, banging herself on the head every time she made a mistake and saying "Stupid me, stupid me," over and over. She wore camo pants, a red and blue shirt, my dangly earrings, and a baseball cap. She was intense and explosive. She hit me with something on the head from behind. Her handwriting looked completely different from yesterday's work. When Lily saw a car she liked, Cadi said, "Yeah, well, it's nothing like the cars I design. My cars are way cooler than that." She has drawn maybe two cars? And now she "designs" them? A little grandiose I think my dear.
She wanted to go swimming in her shorts and t-shirt, because she couldn't find her bathing suit. We told her no, because she has a cold and it's too chilly. She got angry and said she was going to go anyway. So she headed for the pool and Dan went after her. While he took the ladder out of the pool, she hopped in over the side... splash! A while later I went looking for her and she was on top of the shed. I have no idea why she was up there.
Of course it wasn't until after the pdoc (psychiatrist) appt. that she pulled the pool and shed thing and I figured out she was hypo manic. I described some of Acadia's behavior, but I just didn't feel like I was able to give a good objective perspective of what her mood is like right now. Sometimes I just get so confused. I wish we were at the point where they could just do brain scans whenever we went in and then treat her based on what her brain activity looked like. They are getting close with research, but it's still off in the misty, mysterious, untouchable future somewhere.
The doc and I talked about this clinical study we're pursuing. She feels strongly that Acadia should qualify for it, and that it would be helpful for her. But the research assistants said that the study was for bipolar kids who had distinct depressive and hypo manic episodes that last at least 4 days. I had told the research team that I thought her episodes were shorter than that, and even switching a couple of times in one day. The pdoc agreed with that but said that she also has the longer episodes and mixed episodes. So now we have the pdoc telling the researchers one thing and the scatterbrained mom telling them another! I feel like smiling and nodding. I have to put the whole research thing in God's hands. I really have no idea if it's the way we should go or not, but it may not end up even being a possibility, so there's no point in worrying about it. Reminds me of a song. Hmm...Susan Ashton maybe?
It's in my father's hands
and I have no fear
There's no point making plans
When His hands can steer
So why should I so small and frail
Carry life's demands
When He can see where I might fail
And where I might stand..
It's in my Father's hands.

Saturday, September 15, 2007

Apple Pickin'

Glorious day yesterday, so after we finished school, we headed off to the apple orchard.
One of those nice big ones, where you can actually climb the trees!
Look at these two perfect apples I found!

Friday, September 14, 2007

The Sovereign Surgeon

I was starting to worry this morning and turned those thoughts into prayers. I was praying that God would guard and protect my daughter's hearts from emotional trauma and pain, and then I realized... that was not really what I wanted to pray for them. We all need experiences of pain over the course of our lives to make us deep, feeling, knowing, and loving people. And yet, some kinds of painful experiences can be be so devastating in a young person's life. They can be disabling and haunting. As I prayed for my girls, I asked the Lord to be the heart surgeon in their lives. That every cut that must be made, would be made by His expert hands; precisely, lovingly, for their good, and for His glory. Amen

Tuesday, September 11, 2007

Stay At Home, Mom!

Our homeschooling got off to a late start this morning because Little House on the Prairie was on TV this morning. Our whole family was glued to it. "No Pa, no, don't climb that tree you'll.....fall! Oh no, how will he get his crops planted now?".
After we finished school work I went over to the library and ended up discussing my job, pay, etc. I came home and Dan and I discussed whether or not I should keep working. I've been frequently overwhelmed by this and have wondered if the time would come to stop working. It was only five hours a week, but it was taking a lot of my energy to plan and prepare for these four programs I was running. This afternoon I finally made the decision and went and told the librarian that I was done. I'm a home schooling , stay at home mom and in order to do that, I really have to be at home. I need that time and flexibility to give to my kids, my home, Dan and myself. And on those bad days that we have fairly often around here, I need to not have that extra commitment to try to work around.
There. It doesn't feel good right now, but I know it was the right decision, and I will feel good about it later (thanks for telling me that Anna).

Monday, September 10, 2007

The "manic" picture

As I was going through Acadia's records last night I came across this picture. This is what I call her "manic" picture. She's about 5 in this picture. She had made this crazy "dessert" from all this stuff in the kitchen, and then we had to try some after supper. Her eyes were so wild, and her ideas were so big!

I had to compile her records to prepare for a research study we are applying for with the National Institutes of Health. It's kind of a scary endeavor, but we are just going to take it one step at a time until we have all the details to make a final decision about it. I had a phone meeting today with a research assistant and I'm supposed to hear back from them in a couple of days about whether or not Acadia meets the criteria for further evaluation at NIH.

The advantage to getting involved in research is that we would have access to the most cutting edge mental health care in the world. What they are doing with kids right now, psychiatrists will be doing maybe 10 years down the road. It's not anything experimental, just testing, evaluation, and stabilizing with medication.
For today though, Acadia did well with school, and she was laughing so hard tonight while playing PlayStation with Dad. Not manic, just a good happy laugh!
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Friday, September 7, 2007

The last 9 years

If I go backwards on a rollercoaster will I fall off on the loops? We'll see!

My life the past 9 years has been nothing I expected, and everything I could ask for. I gave birth to Acadia after 12 hours on my knees because I couldn't sit or lie down with back labor. It was a good way to start my life with this child! We had prayed for a baby for so long and we were going to have to keep praying for her. She wanted to be held and entertained constantly. She was very sensitive to stimulus, but wanted to always be moving. She cried a lot. I wore her in a baby sling and walked her around. We headed off to Missions Institute in Kentucky and I reluctantly put her in the nursery. When she would get crying, she couldn't calm down, couldn't eat, couldn't sleep, so I walked her and bounced her and sang to her until she finally would stop. She took so much attention and energy that the staff told me I should spend less time holding her, and more time on my studies! That was an extremely rough year for us, but we pushed through and made it to Language School. We continued to try everything we could think of with Acadia, hoping that if we did things right she would do better. Now she was throwing tantrums but we thought it was that "almost two" phase. We headed back to Maine to start raising support to go to PNG.

For the first year in Maine, we lived in a little house in the woods with a pond, a big garden, and no toilet (it was called a "composting" toilet). It was rustic to say the least. But we were happy to get away from the "Institutes" and have our own place. I was glad to finally be able to stay home with Acadia. We enjoyed swimming, fishing, gardening, picking berries, campfires, potty training and walks. We worked on contacting churches and individuals and started scheduling meetings. Dan started doing masonry to make ends meet while we raised support. Lily Pearl was born, and labor was so different that I didn't call my midwife soon enough, so she barely made it for the birth. Acadia was playing in the sandbox when Lily was born, so she didn't hear me yelling to everyone to hurry up 'cause this baby's coming! After Lily was born I held her and thought that there was nothing else in the world I wanted, it was one of the happiest moments of my life.
We'd had enough of rustic, so we moved to an apartment in Stetson, where our family lives. The next couple of years are really a blur to me. Lily was a sweet baby, but not quite easy. Dan did masonry full time, we visited churches all over Maine, and did a mailing campaign with a series of notes, brochures and letters. We took a few trips to PA, KY, MI, MO, FL, SC, etc.

Meanwhile...Acadia turned 3, 4, 5, but the tantrums never stopped. Traveling with her was a nightmare. We took a plane to MD for a family reunion, and missed a flight, so we had to wait for hours in the airport. That was one of the worst days of my life. After that trip I began to seriously doubt that we could take this child overseas. I knew that missionary life involved a lot of travel, waiting, and flexibility, and Acadia did not seem to be able to do any of that.
At home, we were trying everything we could think of. We tried different parenting/discipline methods, thinking "What is wrong with us?". But that thought gradually changed to "What is wrong with this child?" Acadia was having extreme sensory problems, not being able to stand wearing most of her clothes or shoes, changing many times a day, and chewing on everything. She was climbing high on top of things and just sitting there, running barefoot in the snow, and covering her whole body in water, sand, mud, whatever. She was hiding behind things and inside things, and tearing paper into tiny shreds. The list goes on, and I was getting worried. So I started reading. Autism is a big scary word and one that started to nudge me. But the more I read, the more I thought it was something else. Finally we decided that whatever it was, we needed to get help for her. I decided to start with her sensory issues. The summer she turned 5 she was diagnosed with a sensory processing disorder, which gave us something to work with but not many answers. We started going to occupational therapy and also doing it at home. I had high hopes, and though some things she seemed to like, we didn't see any results. In fact, her sensory problems became less of a concern when her mood seemed to plunge. She started saying that she hated me, every single day. She said that we didn't love her. She cried and screamed and told us that she wished a lion would come and eat her up, or that we would put her in a box and mail her far away so she could never come back. My 5 year old didn't want to live. Is that possible? How did she even know about this stuff? My heart began to break. She was raging, angry, sad, and out of control. At other times she was hyper, impulsive, made huge messes and couldn't focus on anything. I kept reading and finally came across the book that I didn't want to find answers in: The Bipolar Child. Finally I scheduled a psychiatric evaluation for her. At first she was diagnosed with Major Depression. We did neuropsychological testing to see about ADD and Asperger. While the ADD was a possibility, Aspergers, Autism, and other developmental problems were pretty much ruled out. The Dr. that did those test agreed that based on family history and Acadia's symptoms, Bipolar was likely, but for now she would diagnose her with Mood Disorder Not Otherwise Specified. Are you counting, because we are getting into some serious alphabet soup with this kid now! I welcomed whatever labels they wanted to give her, because each one gave us a clue to what was going on in this poor kid's brain!
The diagnosis also allowed us to get medicare and other and support for her which was a big help. We started giving her medication, but this was to be just the beginning of a long process of finding the right meds for her.

At this point we had a big decision to make. We had only raised about 30% of the monthly support we needed to go to PNG. That was "promised support" which meant that the majority of it we were not even going to get until we left for the field. We had been raising support now for 3 1/2 years. God gave us peace to let our dream of tribal mission work go. We had to hang on to our daughter right now. We sought counseling for this decision from our family, supporters, and pastor. Still, it was a hard choice to make. Stay home and do what? We hoped that we would find a new direction to move in, but for now, it took everything I had to take care of the girls, and everything Dan had to do masonry work full-time.

Where was Lily you ask? Well, that depends. When Cadi was in a "fun" mood, Lily joined in all the antics. They started to get along really well and have lots of fun playing together. But when Cadi was nasty, Lily learned very quickly to get out of the way or get hurt. I had to watch them carefully and be ready to come to Lily's rescue. One time Acadia was banging a teddy bear with a chair saying "I want to hurt this little bear, I want to make him cry". I didn't know what to do with that except explain why that was not okay, and make sure she and Lily were always safe. Safety became the #1 priority. The worst never happened. Other than a few shoves and smacks, Lily survived in one piece! Clean bathrooms, folded laundry, even trimmed fingernails and clean teeth got shoved way down the priority list. I started to grieve the life I couldn't have with my kids. There was so much we couldn't do, so much that I wanted for Acadia that she couldn't have. So much sadness that it began to swallow me up with it. I got a lot of support from my wonderful family, cried out to God, and started taking medication for my own depression.
My life was the same, but I began to cope.

We decided to buy a house and God provided one that was perfect for us, only about 10 minutes from our families in Stetson. We love it! Big old Maple trees out front, big yard and plenty of room. Lily found an old garden gnome somewhere in the yard. She picked it up and started carrying it around. She called it her "Grass baby". It was so funny because it had a beard and everything. She would wrap it up in baby blankets and put it in her cradle. We had Lily's 3rd birthday in our new house, and in the fall we started homeschooling again ( I had started with Acadia in Kindergarten).

Acadia continued to have a lot of mood swings and we were trying different medications for her. One of her issues was impulsivity. She would get into things and spill them or spread them over the whole house. One day, she "decided" to drink a bottle of cold medicine because "it tasted good". I called poison control and they told me to call 911. An ambulance came to take her to the emergency room, but I had to find someone to watch Lily and borrow a car to get to the hospital. When she left in the ambulance, she wasn't even scared. She told me later that she was thinking about how interesting it all was and that she might want to be an EMT someday! They kept her for a few hours to monitor her, but she was perfectly fine, so I was able to take her home. I moved all the medications and anything potentially poisonous to a locked cupboard. A new psychiatrist diagnosed her with ADD and tried targeting that with medication. I was willing, but it ended up being the worst thing we had tried so far. It had the effect that she would be okay when we gave her a dose, but then when it began to wear off she would plunge into horrible depression, just laying there crying, and then after about an hour, she'd be fine. The third day, when the dose began to wear off, she was sitting at the table with Lily and there was a pair of scissors laying on the table. She started talking to Lily about how she was going to take those scissors and cut herself so she would bleed. I came over and calmly asked her why she wanted to do that. "So I can die". "But you've cut yourself accidentally before and you didn't die", I reasoned, trying to find out why she thought she would die. "I want to cut myself all over my body so that I bleed so much that I will die and go to heaven." I don't remember what I said after that but God gave me something to say and I held her on my lap while she cried. Later, when she was calmly playing with her toys, I called a crisis line and said "My seven year old just told me how she was going to kill herself". A counselor came out to the house and talked to us, but by then the drug had worn off and she was fine. We took her off that medication immediately. This was a huge red flag for bipolar disorder. My nephew (who is bipolar) had a similar reaction to this medication. It's so hard to make the right choices for your child in these situations because the risks of not medicating are so awful, but the medications can be so crazy to work through too. I have learned to take it one Spirit-led step at a time and be open to anything that might help my daughter have a chance at a healthy childhood. I decided to take a class about mental illness in children. The class was a great encouragement to me and I got a lot of information. It helped to step back and look at the problem of mental illness and how it impacts the brain of a child, instead of only dealing with the "in your face" day to day drama of it.
After we moved, we also found a new church, and God began to heal our hearts with the grace that we found. We had struggled against legalism so much in our old church, but it's hard to leave the church you've grown up in. Once we did, we couldn't believe the amazing difference it made for our family. We felt like we could be real, we didn't have to be "Dan and Kathryn the Missionaries" here. We could struggle and hurt and still praise God for His sustaining love. I soon got involved in the music ministry and found myself right at home singing and playing the keyboard with a fantastic praise team.

The last couple of years fell into a more familiar pattern for us, although Acadia's highs and lows were a part of that daily reality. She continued to see doctors and therapists, who worked on adjusting medications and teaching her skills to learn how to ride her "waves". The sensory problems that she had as a little girl faded significantly. More neuropsych testing confirmed dysgraphia, a handwriting disorder, and also that she was starting to fall behind in her schoolwork because of her moods. I was not surprised. I knew that we had been really just surviving and that there were a lot of days where she was not able to accomplish much of anything. I've been so glad that we are able to homeschool, even though it is very hard. It has allowed her to work at her own pace, and have the individual attention that she needs. Acadia is very smart and that helps her learn quickly during those times when she is able to. We treasure those moments that we have and I wouldn't trade them for the convenience of sending her to school. (I also know that I would have a whole new headache trying to get her the education and help there that she would need!)

Dan continued to do masonry work for a total of 5 years. Then a new opportunity came up for him to take a new job distributing books. Although it required considerable financial sacrifice to switch jobs, Dan had long struggled with the physical effects masonry was having on him. He also struggles with depression, so we felt that a job that was better suited to him was an opportunity not to miss. Because the book job is only during the school year, this summer he started his own business doing "decorative concrete surfacing", using concrete to create surfaces that look like brick or stone. It's quite amazing. Dan is able to use his artistic skill and his masonry experience together and really enjoys doing it. He hopes to launch this as a full-time business next year.
Oh my goodness, I'm almost caught up to my present life! I have a little 5 hour a week job at the public library running book clubs for kids of different age groups. Earning a little money is nice, and I love working with books and kids. Sometimes I get overwhelmed and think "Why am I working again?", but most of the time I like doing it.

Lily is doing great. She's six and so very sweet. She is a Mummy's girl and loves to climb in bed with me in the morning and cuddle. She is also a lot like me, loves to sing, and make up songs on the piano, play with her dolls and read books. Acadia is 9, loves horses, Eyore, superheroes, and swimming. She went to Camp Cherith this summer for a week and did very well, we weren't sure how it would go, but it was fantastic. She loves going places and doing things, picking out books at the library (and sometimes reading them), listening to audio books, and playing on the computer. She has a great sense of humor and makes us laugh. God has given our girls a special bond with each other, they love to sneek into each other's rooms at night and have "sleepovers". They have a lot of fights, but they have just as many times when they are best friends.

Acadia has recently been diagnosed with Bipolar II, which is depression and hypomania rather than the real high mania. I felt relieved that she was finally diagnosed with what I have always felt was accurate. But I also felt sad. Bipolar is something you live with the rest of your life, and the journey does not get any easier as it continues. Acadia's medications have made her gain a lot of weight, but without them her brain is one big storm. The hardest thing has been the depression that is always coming back. Life looks so dark during those times that she wishes she were dead. She can't feel love, or hope, or wait for anything. But they are like tides that go in and out, these moods. She also struggles with overwhelming anger and rage, threatening to kill me, or herself, and at times we have to isolate her until she calms down and regains control. But so far, by the grace of God, we have managed to keep her out of the hospital. I have family and friends that I can call whenever I need them, and I do. I do not hesitate to ask for help, because I know we won't survive without it. There are no easy decisions, no quick fixes, only step by step walking with the One who made her, and who made me her mother. He has provided for her time and time again, and I know that He will always be there in the midst of our storms.

That's my rollercoaster, although I'm sure I left out some big chunk of my life in here somewhere. I didn't fall off, although you might have by now, if you've read this entire thing! I am excited to be able to use this blog to write about the highs and lows, ups and downs of our life together. Thanks for swinging with me!

Prelude to my blog...

I found an old friend this week, and by reading her blog I was able to "catch up" on the last several years of her life. It was an amazing thing. I found a few more old friends and now I need to catch everyone up on my life. But life goes on and does not leave me much time for catching up. I decided I need a blog. And here it is. A place to put my favorite pictures and write about what's going on in my life and my head and my heart. I'll start by catching my old friends up.