Month: December 2015

The darkest days of the darkest years

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Isn’t it funny that Christmas comes during the darkest days of the year, the time of the year that we so desperately seek out light. That was all that I wanted those darkest years, to be able to see a ray of light, a glimmer of hope. But all glimmer of light was gone. I had lost my hope. I fell into a time of deep despair. I was angry with God.

Those are the years that I don’t talk about to even the closest of new friends. Nothing. Nada. Zip. Zero. The darkest years happened when I was in middle school. My autistic brother Matt became increasingly violent. So much so that he was not allowed to go to school with other kids. He had to have a teacher come out to our house. When Matt got “kicked out” of school, my mom took my brothers and I out of school too. My parents had us 4 children in less than 5 years, with me being the oldest. I was homeschooled between 8th and 10th grade. While my classmates attended prom and homecoming, I was at home in isolation.

Through the darkest years, my dad totally checked out emotionally and became very depressed. My mom became desperate to find a cure for autism, taking Matt out of state to a hospital that did extreme allergy testing. She thought that if he avoided certain foods and allergens, it would curb some of his violent outbursts. When they came back everything changed for us.

Matt was allergic to everything. My parents got rid of their wood furnace and put purifiers throughout the house. My mom took down her bedroom curtains because they had formaldehyde in them. She used old sheets and blankets as curtains. If the local farmers were spraying their fields with pesticides, she would call them screaming if she didn’t get notified first and Matt would have to wear his charcoal mask. If they did call her to notify us, we had to pack up our car within a half an hour and head up north for a couple of days until things gassed out or it rained. My parents had to park their cars at the bottom of the driveway so exhaust fumes would not come in the house. If my dad snow blowed the driveway, he was not allowed into the house with his snow gear on and had to shower immediately. I wasn’t allowed to wear perfume, hairspray, or nail polish. Those were just a few of the changes that were made in attempts to control Matt’s violent behavior.

It was very hard that year at Christmas. My mom said that Matt was allergic to Christmas trees, even the fake ones. It was at that time that we no longer had a Christmas tree in the house. No decorations. No lights. Nothing. Even my grandma was instructed not to put up a Christmas tree. Instead she put little bows on the wall in the shape of a Christmas tree. It was horrible. Matt had meltdown, after meltdown, after meltdown. Day after day he attacked me. He kicked me, punched me, scratched me, hit me. Ironically, taking away all of the things away from Matt (and the rest of us) did nothing to tame his aggression. It seemed to hurt us more than it helped us.

But how could I be angry at my mom for trying everything she could think of trying? How could I be mad at my brother who wasn’t bright enough to read or write? I fell deeper and deeper into despair like a small flower buried under the cold deep snow.

One last Christmas of magic

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I remember one Christmas where my dad played the part of hero. But was he really?

Christmas at my parents house is kind of a blur now. I remember having two or three Christmas trees before it got to the point that my parents didn’t celebrate with a tree in the house anymore. One year I got 2 Cabbage Patch dolls, that was memorable. Another year Luke took a little earring box that I had and put a couple of pennies in it under the tree. I opened it before Christmas and wrapped it back up again. My mom found out and I got in trouble for that. But the most memorable Christmas was the one that my dad played the hero. I don’t think that my brothers will remember ever celebrating Christmas in my parents house. I will have to ask them.

It was Christmas Eve when our dad was a hero to us. My younger brothers and I had our Christmas program at church that evening. My dad stayed home. After we did the Christmas program at church, we received a bag of goodies which consisted of an apple, an orange, and peanuts. We came home that evening to find that my parents bought us an Atari gaming system. My dad had it all hooked up when we got home and was playing on it. He let us play on it too. We thought that it was really cool. Wow!

We thought that my dad was really cool to surprise us with it. But was he really? He didn’t come to our concert and watch us perform. Through  adult eyes, I don’t think that was very cool. He didn’t play the part of hero very often in our eyes, so I will give him that little small moment. On that one magical evening, he was a hero to us. It was the best and last  Christmas memory at my parents house.

Handing over the Christmas baton

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After decades of Christmas perfection, little tremors needled away at our  family tree structure creating (gulp) change. The Thanksgiving after Paul and I got married, Uncle Harold passed away. A few years after that my grandpa passed away. My brothers grew up and moved away, with the exception of my autistic brother Matt. I started to have children of my own. Grandma struggled more and more as she aged with doing all of the cooking, cleaning, and decorating involved in having a family Christmas party. We tried to help her as much as we could. Then one year it all ended. My grandma had open heart surgery the summer that I had my third child. It was at this time that my grandma handed the Thanksgiving and Christmas baton to me.

At the time, we were having my in-laws over every Christmas Eve. Year after year it was pretty much the same. My in-laws would show up 2 to 3 hours late. The table would be set. The food would be cold. The kids would eat supper at bedtime. The kids were tired and hungry which made them very crabby. They would cry and have meltdowns. This upset my mother-in-law which resulted in an argument between her and my husband over her being late. At this point, Paul’s stepdad and I would look at each other across the table with a knowing look that said “here we go again”. One of two things either happened. Paul’s mother would disown him and take off for awhile. Or Paul’s mom would scream at my husband and he would kick her out of the house. Eventually she would come back in both scenarios, the gifts were opened, and the kids would go to bed.

After receiving the Christmas baton, Paul and I did what most reasonable people do. We combined our families to make one big happy family Christmas. Insert thoughts of the National Lampoon’s Christmas here. It did go pretty good for quite awhile. Whoever showed up, showed up. We ate at 1:00 PM. If you were late, there were leftovers. Things went pretty well, although after awhile it seemed that my mom and mother-in-law started an unspoken “best grandma” competition. My mom won that one hands down because she could afford nicer gifts and spent more time with the kids. Then my in-laws started to find excuses not to come for Christmas. Either someone was sick, or my personal favorite was that Paul’s stepdad scheduled a colonoscopy the day after Christmas. Priceless.

Oh family, you bring laughter and tears but we love you anyway.

Then a couple of years ago, Luke and his family bought a house that was bigger than mine. I handed him the Christmas baton. All problems solved.

What frozen tundra?

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It has been raining a lot since yesterday. Water pools on the green grass and harvested fields. Wait, what? Green grass? Isn’t the tundra supposed to be frozen this time of year in Wisconsin?

The constant dripping of the rain like a tapping on little drums awakens me from my slumber. Yesterday I awoke to the rumble of distant thunder. It was as if my grandpa woke me up on the 15th anniversary of his death to reminisce about summer. Think of the better days…the days when we were all together, not of the dark days that I have been gone..

I have never heard of a thunderstorm here in December. It should’ve been a blizzard. On very rare occasion, I have witnessed snow thunder probably two or three times in my life. Snow storms and thunderstorms usually don’t mix. But we didn’t get any snow yet, just rain. It has been very warm for this time of year. This month we broke some record high temps and are on schedule to have the 5th warmest year ever recorded. Yesterday I even saw geese flying north. The birds seem as confused as we are. I am not complaining. I was able to run outside several times already this December. I have never been able to run outside in December before.

The ice fishermen are complaining though. In about two weeks, the ice should be thick enough to walk on. In January, you should be able to drive a truck on the ice. But this year the ice hasn’t started forming yet. Some people have been desperate enough to get their boats out of storage. It’s a shame, we could’ve gone sailing. I’m sorry, if I’d known that buying cross country skis last year would have this kind of effect on our winters, I wouldn’t have done it. Geez.

On these dreary days, I just want to sleep or curl up next to the fireplace with a good book. Except I don’t have a fireplace. So I will settle with curling up next to the Christmas tree with a good blog.

Tomorrow I’ll get this write

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Do you ever have one of those days when you have a lot to say but your words look like indecipherable hieroglyphs? The words clash. I sound like the one person playing a different tune in the orchestra. 

This is crap, I say. I’ll just delete this blog and walk away. I’m going to bed. Maybe tomorrow I’ll get this write. 

Christmas with the in-laws

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It is Christmas Eve in the year 2000, my baby and I are sick. I haven’t been able to leave the house. That prompted me to write in this journal even though it has been almost 5 years since the last time I wrote. It has been a hard Christmas this year. Aside from having a 2 year old and a baby, my grandpa passed away a week and a half ago. I haven’t been able to sing in church this year because I lost my voice and ended up changing a lot of plans for the funeral.

Tonight my in-laws came over for a Christmas Eve supper. We made cornish hens, mashed potatoes, corn, stuffing, bread, bars, and cheesecake for the meal. My in-laws arrived over two hours late. They brought their outdoor dog with them because it is very cold outside tonight. While I was eating supper, I found a dead flea like bug in my corn. It made me lose my appetite, but I didn’t say anything. Later I threw out my corn.

After dishes and presents, it was time to put the kids to bed. While I was doing that, their dog peed all over the carpeting in our new house. My in-laws fought about can openers. Then my mother-in-law said she wasn’t going to church for Christmas because she needed to make slippers. Her husband told her that she needed to get her G. damn priorities straight then promptly fell asleep while Paul read the Christmas story out of the book of Matthew.

They finally left around 11:30 PM. We spent a half an hour cleaning up the 2 big piles of dog crap that we found. After this Christmas, I don’t know whether to laugh or cry.

Still the classical music plays

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My mom called me in the say that Mr. Smith died today. Tears fall from her eyes but all I want to do is go back outside to play. The snow is over my head and I want to go back to my little hill to sled. My little brothers are busy ants digging underground tunnels in the snow. It is cold and quiet outside. Sometimes I sing a song to hear my voice echo back to me. Then I don’t feel so alone. I am always alone. None of my friends are allowed to come over and play. Matt scares them away.

My mom takes me over to see the really old people in town. She said they like it when little girls come over to play. They don’t have any family and are all alone. I like Mr. and Mrs. Smith. Sometimes Mrs. Smith gives me cookies and one time she took me upstairs to see the dolls she used to play with. The dolls are really old and I can’t play with them. Mr. Smith showed me his card shuffling machine. I really liked it. Mr. Smith is sick. He coughs a lot. Sometimes he doesn’t get out of bed when we visit. Mom said Mr. Smith died today. Maybe I’ll see him tomorrow but right now I really want to play.

Mom keeps crying. It is making Matt upset. We can’t sleep. Matt rocks back and forth in his bed. He rocks until his face bleeds and blood is on his sheets. My little brothers can’t sleep because Matt is making too much noise. My three brothers share the room next to me. Mom cries. The day Mr. Smith died, mom put a record player in the hall at night. She thought that the classical music would soothe us to sleep.

Night after night, the classical music plays. But it doesn’t relax me. Instead I feel afraid.

 

 

Childhood Christmases in a (chest)nut shell

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Childhood Christmases in my mind were perfect. Except for that one Christmas that we aren’t going to talk about today. It was as if everyone knew how difficult the rest of the year was so they did everything possible to make two days of the year perfect for my brothers and I, our birthdays and Christmas.

My grandparents had a small Thomas Kincade like house. It was warm and cozy on the inside while cold winter storms raged outside. Icicles hung from the porch and garage roofs dripping droplets of shattered ice onto the walkways, one last obstacle against the warmth that beckoned from within. Upon entrance, steam whisked away into the frigid air from the kettle of boiling potatoes next to the open door. The aroma from the ham cooling on the stove top next to the potatoes was intoxicating. Grandma had a counter full of food, homemade pies and cookies too. Every year grandma had a chest cold. She coughed and coughed though she didn’t seem to mind. Soon Aunt Grace showed up with her brother Harold. Aunt Grace always brought cranberry sauce and the fruitcake that my brothers and I didn’t like to eat.

I was always first to ask if we could open our presents right away. Grandma always said “no”, but we could look inside our stockings that were hung over the fireplace. My brothers and I each had a stocking that contained our favorite candy. There was a tiny stocking for grandpa hanging in the corner that held one peanut. What drew our attention the most though were the boxes of wrapped gifts under the tree. We were always peeking in hopes of finding a big box with our name on it. My grandparents cut their own Christmas tree from their tree farm. It stood on top of a large round end table in front of a big picture window. The tree was always lopsided in some way or another, but we never noticed. Grandma always covered the trees with tinsel and old fashioned ornaments.

After lunch, we all sat in our places that we sat in every year to open gifts. Uncle Harold sat in the rocking chair near the fireplace. He always laughed a lot on Christmas day. We didn’t see him a lot the rest of the year because he was always working. I sat on the love seat near the tree. In my memory, there was always 3 feet of snow on the ground with an inch of playful snow that swirled around in the wind. After we were done opening gifts, we would have a fire in the fireplace. Christmas day was the only day of the year that my grandparents used the fireplace.

We always stayed at my grandparents until it got dark. We played with our new toys. The men slept in their chairs. Aunt Grace always made sure that the dishes were done. Grandma put away the extra food and took down the fancy table with the red tablecloth. It was Christmas perfection in a nutshell. Even if Matt had a meltdown on Christmas day, I never remembered that. I couldn’t remember that. To me it was always perfect and magical.

Christmas stalkings

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The first time that my mom met my husband Paul didn’t go all that well. The year was 1995. We met for lunch at a cheap pancake house. We sat in a booth in the nonsmoking section. The conversation flowed up until the point that my mom asked my new boyfriend what his beliefs were regarding God. I warned Paul before lunch that if religion were to come up that he needed to change the topic. But Paul didn’t, he went on and on about how he believed in evolution. At this point, I started kicking Paul under the table as he droned on and on about atheism and the rational mind. So my mom did what any devout Christian would do. She set me up with my ex-boyfriend, Brad.

I met Brad a little further back in the days of ratted hair and tight rolled jeans. Brad was in the military. He was the one who had the same personality as me, was also a first born, both are left handed, and we shared the same religion. My whole family loved him and thought that I would probably end up marrying him someday. But after over two years of being in a long distance relationship, we decided to call it quits right before Brad left for a year commitment on a Navy ship. Right around the time I met Paul, Brad finished his time in the military.

One day, shortly after she met Paul, my mom invited me out to lunch at a pizza place. When I got to the restaurant, my mom was waiting for me at a table with Brad. Brad told me how much he missed me and loved me. He was home to stay and wanted to get back together. My mom chipped in every so often about how wonderful that would be. At one point in the conversation Brad started crying. He grabbed my hands and pleaded to get back together. But it was too late. After the meal, I took Brad back to my apartment a couple of blocks away. I gave him back his class ring and all of his pictures. I was so mad at my mom. My mom took things into her own hands, but God had other plans. Funny how that works.

Last week, I told my mom that after Paul had a conversation with our daughter Angel’s stalker that he seemed to back off. Angel’s boyfriend ran into her stalker a couple of times on campus and he nervously walked away with lowered eyes. I told my mom that I thought our stalker days are behind us now. That is when my mom reluctantly told me to watch my back.

Brad recently accepted my mom’s friend request she sent him five years ago on facebook. Last month Brad’s wife passed away. He sent my mom a message asking if I was happy in my marriage. He told my mom that besides his wife, I was the only other woman he ever loved. He told her that he still loves me a lot. The conversation freaked my mom out enough to take a screen shot of the whole conversation. Way to go mom!

So every time I attend a public event that people know I am at, I am hyper vigilant for stalkers now. Seriously, call me paranoid but my life is just that crazy.

 

Demons past, present, and future

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Every couple of months my mom and I take the day off of work to spend the day together. This usually involves going out to eat for lunch and getting a massage. Last week we had our mother-daughter day. This time it included a back burner task. I decided that we needed to take in all of our old family videos to be saved onto a hard drive. Silly me, I thought that we could drop off the old VHS tapes and be out of there in a half an hour. We ended up being in the store over an hour talking about not only converting our old family videos but also eventually taking the old family photos in to preserve them.  I know that I have at least 3 large bins full of pictures to scan. This is going to be a big project.

It was at that point when it really hit me that my parents are getting old. It seems like yesterday that I was going through all of the old pictures with my grandma and great aunt Grace trying to put names to faces. All of my grandparents are gone now. I have only one great aunt left. My mom is the oldest living sibling. My parents are close to 70. Now is the time to work on this huge project with my mom.

It is also the reason that I don’t want my mom reading my blog. She is getting old. I don’t want this to be a reminder of the most difficult times in her life. She finally has a sense of freedom that she never had before. She doesn’t need to be reminded of the hard times. I don’t need to remind her of the day that she was trying to stop Matt from hurting himself during a meltdown. That was the day that she ended up with a black eye and bloody lip. It would be very painful for her to have to remember those days. It is very painful for me. Her life has been very difficult, I want her last years to be happy.

Matt also went to my daughter’s choir concert this past weekend. At one point he became separated from our mother. He became very anxious and agitated pushing through the crowd to find her. I calmly reassured him that he was alright, that mom was close by. But what happens when she is no longer with us? How will I not only get myself through it but help my brother through when he cannot process change? Every time I spend time with my mom I reassure her that I will help take care of Matt when she is gone. It will be alright, I can do this.

I decided that I will write a book about the journey of life with an autistic sibling. It will be hard. It will be painful. Next year I will dig out the old box of journals written during the darkest years. I will share it with you. I will start the process. Maybe I will even find out why I can’t relax. Why I always have to stay busy. Relaxing makes me nervous. Why does my skin crawl listening to relaxing piano music? Why does quiet meditation fill my soul with terror? Time to face my demons. I can do this.

Why do I torment myself with this? Do you know how easy it would be to delete this blog and walk away like none of this ever happened? But I can’t seem to let it go.