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!

5 comments:

Suzy said...

well it's good to know you've finally gotten caught up on your life..haha are you still waiting for the "green arrow" ?
luvs

annamade said...

Wow! That is a very impressive post, well done. :) I reviewed your blog for this Blog Code site and guess what? Once I was finished, they informed me that another blog I might like to visit that sounded similar to yours was "Still Kissing Frogs."

Huh.

Ginny said...

My niece Faith will be 14 tomorrow, and she has many of your daughter Acadia's problems. Whenever she's with her cousins (my kids, who are much older), she shows her best side, so I've missed a lot of the tantrums and depression, but I know that my sister had at least one occasion where they missed a flight because of a tantrum. She has dysgraphia and some sensory disorders (I remember that she doesn't feel dizzy after she spins around). My sister has put her into the public school system, but she's moved around a lot to find schools that can deal with Faith's problems. I know Faith was diagnosed as bipolar at some point, but I think they've moved away from that again. I enjoyed reading your blog.

D and S said...

Hi there dear--Thanks for sharing this. It takes a lot of strength to be you. I often wonder why God gives some people what seems greater struggles than others and it's not necessarily our strength, but it shows how powerful HE is and can be through you.

Selena

Susannah Marie said...

i read this again today,(not without a few tears) It's all rather overwhelming reading it all through ( no kidding right?) a lot of it is all rather hazy in my memory. Anyways reading it all, it's really amazing the way God has always seen you through. It just really stuck me how He's always kept you all safe, even Acadia when she would want to hurt herself.
Haven't seen you guys much (my fault) Hopefully i will get over there sometime soon. I miss you guys
luvs