Renewal

Yesterday afternoon Daughter and I dropped the cats at the kennel and headed to a camp and conference center for a conference we’ve attended annually for many years. We were greeted warmly by old friends. I sat down in worship for which I had no responsibility and allowed the music and Scripture to wash over me and renew me.

Each year I arrive here exhausted, having pushed myself all year. This year I had a funeral on Friday, a wedding on Saturday, and of course, worship on Sunday. It seems that each year, right before I leave, there are several demanding pastoral care situations. This year was in keeping with that tradition.

I slept well last night, and didn’t feel the need for massive quantities caffeine this morning. By the time we leave Friday, I’ll be ready to jump back into my real life, and will have new ideas and insights for my ministry.

This is a wonderful community for Daughter. People know her and understand her special needs. I will see her at mealtimes to help her manage her diabetes, but most of the day she will be on her own. Some close friends brought the 7 and 9 year old daughters of a friend, and Daughter has already taken them under her wing. It’s a win-win for everyone.
Daughter will be taking two classes that I carefully helped her select. One is taught by a woman with a MSW who had worked in mental health and MRDD. The other is taught by an old friend who is a special education teacher and the mother of a diabetic. Daughter loves her, and considers her another mother when we’re here.

I’ve already eaten three meals for which I had no responsibility. I attended class this morning and gained new tools, knowledge and insight into my ministry. I have the afternoon free to rest, visit, walk around the beautiful grounds, or do the work I brought along with me. This evening (and every evening), I will sit in worship as a participant. The music will be wonderful, the worship creative, and my soul and my imagination will be fed. This is my time for renewal.

Psychotic at 8

My daughter first began hearing voices when she was 8 years old. Parental rights had finally been terminated, the adoption was final, and I thought the worst was behind us. When the voices first began, I was concerned, but not panicked. She was seeing a counselor, who was monitoring the situation.

Gradually, fear began to take over her life. She began moving around the house to sleep, seeking someplace where she would feel safe. For a while, she slept in my closet (which was barely big enough for her to lie down.) Eventually, she ended up in my bed, and finally, she couldn’t sleep unless she was in full contact with me, which certainly didn’t help me sleep. Then she developed a fear of the bathroom. It got so bad that she wouldn’t go into it without me, and the only way I could get her to bathe was if I let her shower with me, and I stood between Daughter and the drain.

Gradually, Counselor found out the source of her fears. She thought she was going to be sucked down into the drain, where her molesters would be waiting. Finally Counselor told me I had to take her to see a psychiatrist. Counselor went with us, and introduced us to a supportive, compassionate woman. She started daughter on a low dose of antipsychotic. Psychiatrist told me I had to arrange different after school care for her, as the daycare home she was attending had lots of toddlers who were the same age Daughter had been during the abuse. She explained that was triggering her post-traumatic stress disorder. I also did battle with the school, to get her out of the regular classroom (where a boy had mooned her class and she thought snakes were living in her desk) and into the emotionally handicapped program. These changes brought a miracle. I didn’t realize how exhausted I had been until the first day I was able to take a shower alone. Her fear of the bathroom was gone, and she soon returned to sleeping in her own bed.

The anti-psychotic worked for about a year. We had moved to a different state, and she had a new school with a wonderful teacher. One day her teacher called me, concerned. Daughter was insisting that there were bugs crawling all over her, and especially on her back. The teacher looked at her back, and not only weren’t there bugs; there wasn’t any sign of irritation. When I told her new psychiatrist about her symptoms, he immediately ordered her admitted to the psych unit. He wanted to switch her from her older anti-psychotic to one that had just come out, and he wanted to do it in the hospital. She was 9 years old when she made her first trip to the adolescent psych unit. Leaving her there was one of the hardest things I’ve ever done. But the new medication worked wonders, and the bugs vanished.

I know there are many who don’t believe in psychiatric medications for children. I have had parishioners ask me how long I’m going to keep her on all those drugs. When she was diagnosed with diabetes and I saw headlines linking Risperdal to diabetes, I questioned if by allowing her to take these drugs, I had somehow caused her diabetes. A wise friend asked what the alternative would have been. Then I begin to remember. I remember the time the voices instructed her to take a knife to her bedroom so she could kill me and then commit suicide. I remember the nights she’s spent camped out on my bedroom floor because she didn’t feel safe in her own room. I remember the day she tried to hang herself in our front yard. I remember, and I give thanks to God that there are medications that can stop the voices and give her some peace.

A Magnet

Daughter was sexually abused in her birth family. Because I am serving in a very small town and Daughter has had so many problems, including a number of psychiatric hospitalizations, we have been very open about her history. I figure it’s better to have people out their armed with the truth than to allow the rumor mill to create stories to fill in the blanks. People have generally been supportive and understanding because they know some of the reasons behind Daughter’s challenges, which is good. That was what I had hoped would happen. What I didn’t anticipate, though, was that I’d become a magnet for all the people in the community who have the pain of sex abuse in their families.

I have heard stories from all ages. They know I understand their pain. There have been times when I’ve felt like everyone I come in contact with has sexual abuse somewhere in their past of in their family. There are times I feel like I see it everywhere I look. It seems that death often brings the pain of incest back up in powerful ways. While every family deals with it differently, it always impacts the entire family.

I remember dealing with a family where I knew 2 generations had been victims of one man. His wife never wanted to know all the details, and never understood how bad it had been. Her children loved her, and sought to protect her from the terrible truth. When she died, there was a display board at the funeral home with pictures from her life, including several of her school pictures. When I looked at those pictures, I felt a wave of horror. These were not the smiling pictures of a happy child. There was fear and a certain watchfulness preserved in those pictures. I knew the look on her face. I’d seen that look on my daughter’s face many times.

Understanding dawned. I understood why she hadn’t wanted to know all that had happened. I understood why she hadn’t been able to deal with it. I understood, and I grieved. There were at least 3 generations of victims in that family. I began the conversation with those who have not been able to deal with their anger and pain. It is a conversation that will continue. Hopefully the conversations will help end the cycle.

If any good has come out of Daughter’s suffering, it is that I have become a magnet, a safe place for others to come and face their pain. I wish I weren’t a magnet. I wish there wasn’t a need for magnets. But there is, and I will listen, educate, and grieve.

Working at Cross Purposes

Eight years ago Daughter was diagnosed with Type 1 Diabetes. It is a difficult and challenging disease, and on most days she checks her blood sugar at least 5 times and takes at least 5 shots of insulin. At all times she has to have certain essential supplies with her: a blood glucose meter with lancet and test strips (for testing her blood sugar), an insulin pen with needles and alcohol preps (so she can take insulin to cover a meal or snack), glucose tabs and packages of cheese and crackers (to treat low blood sugars). I carry a glucagon kit (for blood sugars so low she seizes or loses consciousness). She records her blood sugars, insulin she takes, and the carbs and calories in everything she eats (at least in theory—sometimes she forgets).

I have worked very hard at making diabetes a normal part of her routine. She doesn’t complain and say, “Woe is me,” when she puts on her glasses in the morning, and I want her to have a similar attitude towards the tasks involved with her diabetes care. When she is with me, she checks her blood sugar wherever we happen to be, and if she is eating and needs insulin, she takes it right at the table (with the pen she can be so discreet about it that some people don’t even notice.) If she is low, I tell her to take some glucose tabs and get on with whatever she was doing. She does have to recheck and complete her treatment with crackers back when she’s in range, or glucose tabs. Unless she has a severe or extended low, she can continue with her activities. Her last two years of high school, she carried her supplies with her and took care of her diabetes without supervision most of the time (there were a couple of times when she wasn’t being responsible and she had to be supervised until she was ready to be responsible again.)

Daughter attends the sheltered workshop, and is supposed to be developing the skills she needs for community employment. Unfortunately, we often seem to be working at cross purposes. They make her check her blood sugar in the clinic, which immediately sets her apart from her friends. In addition to checking before lunch, they make her check before exercise and before getting on the bus. If her blood sugar is below 120 at exercise or bus time, they make her eat crackers. At home we don’t worry about blood sugars unless they are below 70. At the workshop, they tend to panic if there is a low (and often these “lows” are actually within normal range). Daughter picks up on their anxiety and uses it to manipulate them.

Today she came home from the workshop complaining of having a bad day. When I asked what had made it so bad, she told me her blood sugars had been terrible. I asked what they’d been. They had ranged from 71 to 111. Those numbers are all within her target range and were remarkably stable. Of course, they had made her eat three times, and so she was trying to convince me that she didn’t feel good because she’d had such trouble with her blood sugars. I didn’t bite, and after I told her several times what good blood sugars those were, she dropped the pitiful act.

I keep wondering, though, how she’s ever going to hold a job in the community if she’s being taught that normal blood sugars are disabling. I’ve talked to the people at the workshop and told them to relax and explained that Daughter was using their anxiety to manipulate them. Her diabetes educator has done an in-service at the workshop, seeking to explain and reassure. I guess I should celebrate that they let her go to exercise class with a normal blood sugar today. They even let her ride the bus home! There was a time when they made me come get her any time her blood sugar was below 100 because that was such a dangerous blood sugar. I guess I'll celebrate the progress we've made, and hope that at some point we'll all be working to make diabetes a normal part of her routine that doesn't interfere with her ability to exercise, ride the bus, or maybe even get a job!

The Weekend It All Began

I still remember the night it began. My brother, who was in the navy, was visiting me. I was living in a 2 bedroom apartment and serving as pastor of an inner city church. My sermon was still in process, and Brother and I were relaxing in the apartment when the phone rang. It was a woman I had been working with for several months. She had taken her children and moved into a battered women’s shelter 6 months earlier. She was now back in the family home waiting for a divorce to go through.

She wanted me to come get her kids, as she was unable to care for them due to illness. I made some phone calls and found a family that was willing to take the son for a couple of days. I figured I could handle Daughter, who had just turned 3 and was a shy, retiring child with enormous eyes.

Brother and I got in the car and drove to a neighboring town to rescue the children. I dropped off Son and took Daughter home with me. My brother still remembers it as the visit when he “almost” got to sleep in a bed, as I finally had a 2 bedroom apartment. He had to surrender the second bedroom to Daughter and sleep on the sofa bed yet again.

It was supposed to be just for a weekend, but the weekend kept growing longer. Son had been placed in a therapeutic foster home, in the hope they could begin to address his severe behavioral issues. (He had stolen a number of items from the church family who kept him for the weekend. It was later discovered that he had been molesting Daughter.)

By the time I realized that Daughter was never going to be able to return to her birth mother, I was hooked. I couldn’t even consider allowing another family to adopt her. It took over 5 years for her to become free and the adoption to go through. As I look back on it, it’s a good thing I didn’t know what I would be facing, because if I had, I’m sure I wouldn’t have gone through with the adoption. I would have been convinced that I wouldn’t be able to handle it all. But I didn’t know, and God has provided the strength to get through each new challenge.

It’s been over 18 years since that first weekend. We’ve been through more hospitalizations than I can count (for both medical and psychiatric reasons). I’ve had more hateful words directed at me than I could have ever imagined. I thought that by now she’d be living on her own, or at the very least be capable of staying home alone. I thought that by now I’d have my freedom back. It has been nothing like I imagined. I am profoundly grateful for almost every moment of it. She has taught me about God’s love. I have become a better person and a better pastor. I’m glad I didn’t know what the future would hold that Saturday night I answered the phone and agreed to keep Daughter “for the weekend.”

The Incredible Bean Bag

An ongoing challenge for my daughter is her bedroom. She cleaned it yesterday, and when I wandered in this morning, I noticed some things shoved into a corner. It brought back memories....

When we first moved into this house, Daughter chose a large bedroom. It is a wonderful space, but I think it was a tad bit overwhelming for her. In our last home her bedroom had been small, and she was young, so I had helped her keep it clean. When we moved here 12 years ago, I decided she was old enough to take responsibility for it herself. There were daily reminders, but I soon discovered that she was often totally overwhelmed by the bedroom. I began breaking things down into smaller pieces for her: "Go find all the dirty clothes in your room and put them in the hamper." "Pick up the trash and throw it away." "Now put the shoes on their rack." There was always lots of praise when she finished one part, and occasional breaks to reward her progress.

It worked, at least to some degree. She would carefully pick up all the dirty clothes and hide them in the corner of her closet. Trash would find its way into the nearest drawer with some space. Over the years, I learned to not only check her room, but her hiding places. Each time I discovered a hiding place, she seemed to find a new one. If I didn't find the hiding places, and make her clean them out all of the items she had squirreled away in them would be vomited all over her bedroom the first time she couldn't find something.

I pointed out that it was just as easy to put the trash in the wastebasket when she was cleaning, and that then she wouldn't have to deal with it again. I pointed out that dirty socks hidden in a purse didn't get washed. I suggested that failing to properly dispose of syringes and insulin pen needles was dangerous, and reminded her of her grandfather's foot surgery for a needle that he had stepped on. Whenever she couldn't find something and trashed her room searching for it, I would point out that her life would be much easier if she would put things away properly the first time.

It amazed me how quickly she could trash her bedroom, and how long she could agonize over the cleaning process. None of my reasoning, support, consequences, or anything else seemed to have any longterm impact on her. Finally, after several years, things seemed to click. I could go hang up something in her closet without finding it full of mysterious bags jammed full with a fascinating mixture or school papers, trash, food wrappers, dirty clothes, toys, books, etc. I praised her, and enjoyed not having the daily battle.

Then one day I happened to notice that the bean bag chair in the corner under the two windows seemed to be growing. I had never heard of a chair that grew. Curious, I went over to examine the chair more closely. With a sinking feeling, I noticed something was sticking out from under it. With growing dread, I lifted the chair and cautiously looked underneath it. Under that chair I found trash, books, school papers, dirty clothes, shoes, toys, books, and all sorts of other things.

I think it was then that I realized what she was learning from all my work with her on her bedroom: she was learning to be sneakier! Eventually, I moved her into the much smaller guest room. I allowed her a bed, three door dresser, night stand, and lamp. She had 3 or 4 sets of clothing. I set up a plan that would enable her to earn more items in her room as she showed herself to be responsible. She managed to earn a mirror, and over the years books, art supplies, and various other things have found their way into it. Sunday night she was looking for something. I realized how many things had found their way back into there when she spread them all over her floor in her search.

At least she has learned not to ask for tv without cleaning her room. This morning when I wandered in and saw the shoes and pillow piled in the corner, I didn't say anything; I pointed to it and left. We have made progress. The battles over the room are less intense these days, and every so often I get a wonderful laugh when she requests to move back into her old room.
As soon as I begin to laugh, she drops the subject....

Are You Paying Attention?

Sometimes it's when she's being the most cooperative and responsible that I need to pay the closest attention. It's been a challenging week here, as I've juggled multiple ministry responsibilities including pastoral care in some very difficult situations. Several nights I ended up needing to run to the hospital for a visit to someone who was dying. Normally, these visits are done while my daughter is safely occupied at the sheltered workshop, but this past week there weren't enough hours in the day to deal with all the various needs.



My daughter is an old pro at these visits. She takes her ipod and/or an art project and waits somewhat patiently in a waiting room while I go attend to the patient and/or family. She knows that her reward will be a meal out, though sometimes it's just driving through a fast food place. This past week she connected with the family of the dying member, and had been very supportive throughout the disruption of our routine: "Mom, it's okay, you're a minister, and you need to be there for them."



Yesterday I dragged her to the hospital in the City with me, and then agreed to drop her off in Town so she could go to a movie with friends while I went to the funeral home for another family. I decided I'd save gas by following up the funeral home visit with a trip to the grocery store, so I wouldn't have to make another trip to Town to pick her up later. When we got home, she could tell I was exhausted, and encouraged me to go put my feet up, which I did. After dinner in the hospital cafeteria, she wasn't very hungry come supper time, so I helped her figure out insulin for chips, salsa, and cheese for supper. She watched a little bit of TV with me, and then went to bed early. (She had awakened at 3:45 a.m., and unable to fall back to sleep, had been up ever since). As I was preparing for bed, I went down to the kitchen, and discovered an almost full bag of pretzels was missing. I suddenly knew why her blood sugar had been so high when she checked before her bedtime snack. I went up to her bedroom and turned on the light, looking for the missing pretzels. Those were well hidden, but I quickly found a number of empty half cup ice cream containers, hidden in a lunch box. She woke up, and I asked her to give me the pretzels, which were hidden under a pillow.



This morning she was very cooperative (she heard me leave at 2:15 to go to the hospital in the City), and very apologetic. I was too tired to deal with the food issue then, though I did point out the extra ice cream would not help her in her quest to lose weight.



I know why it happened. I know why in the midst of being outwardly cooperative and supportive to the point of volunteering for extra household chores she was bingeing on food through the night. She was testing me: Could I still protect her and keep her safe from herself when I was in the midst of a busy and emotionally draining week? Did I still love her when my attention and energy were focused on several grieving families?



I also know that I cannot control her eating. It's taken 8 years of diabetes battles, but I've finally figured it out (so I'm a little slow....) I know I can't turn this into a power struggle. What I will do is have her write down the extra food in her record book, along with any blood sugars and extra insulin she took (she says she took insulin to cover, and I believe her, since her morning numbers have been pretty much in range). I will ask her t0 wash out the ice cream cups since there won't be room for that many in the dishwasher at once. I will offer to support her in her battle by placing the ice cream in the back porch freezer and locking it, if she thinks that will help. It is her disease, and she needs to take responsibility for it. I can support her, but I can't control her.



I will also wash her hair for her tonight. She told me this morning she had wet it down, but she hasn't tried to wash it and hasn't asked me, because she knows I've been too busy. I will show her by my actions that even when my ministry is very demanding, I still am paying attention to her. I still notice when she's not keeping herself safe, and I will still provide her the support and help she needs.