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.