childhood

3 days

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Today I found out all my closest friends will be attending the wedding. I am pretty excited about that. You know what they say, friends are the family we choose. I have a lot of family I consider wild cards. You never know what you are going to get.

My mom said my brother Luke won’t like the music. There is no doubt about it. After he stopped drinking, he became addicted to faith and very legalistic. He does not listen to any music that is non-Christian and neither does his teenage homeschooled kids. I know he looks down upon my family and views us as a bunch of savages. I also know that religion is where he feels safe from all the crap we experienced so I try not to take it personally. It’s not even that I disagree with him, I totally understand and think it is better for him than drinking too much. But he has a tendency to judge instead of support, the latter something we were never taught to do either.

Luke isn’t the only one questioning the music and other choices regarding the wedding Angel and Dan have made. I told Angel that I trust her judgment. What she really has a problem with is people not trusting her. She’s got this. Music is her thing. She has a music degree and a job in the industry. I can understand why it is so important to her. She said she doesn’t want to take requests because they bog the DJ down when she has a well thought out playlist already made. They will have jazzy dinner music from 6 to 8, dance music from 8 to 10, and club music from 10 to midnight. At the ceremony, they will have several singers and a pianist that hold the minimum of a Bachelor’s degree in music. I told my daughter I think she has this handled and validated her feelings of frustration over people questioning and criticizing. It’s their wedding. Angel said she is starting to feel more excited about the wedding than anxious today.

Other than that, I ironed my son’s shirt for the wedding. If it was up to him it would probably still be sitting in the bag I bought it in laying around somewhere. I can’t remember the last time I ironed. Yes, I have an iron. I got it for a high school graduation gift from my aunt. I remember that because when I opened the gift I was excited to see what was really in the box and it really was an iron. Our house has an ironing board built into a drawer in our kitchen island. It looked well used but it was the first time I used it.

As I was ironing, I started to think about ironing. When did that stop being a thing? I missed the smell of ironing. I started to think again of my grandma who was always ironing it seemed. She had a glass soda bottle with a little sprinkler on top to put little drops of water on the clothes before ironing. If you think laundry is a hassle now, try ironing everything.

My mom also gave my grandma laundry to iron. I remember my mom saying the smell of ironing also triggered my brother Matt’s violent outbursts. In the summer, my mom would iron outside. When she couldn’t do that, she sent it all over to my grandma’s. I had forgotten about that, but it all came back to me today. My mom thought if we could perfectly follow all of the crazy rules then Matt wouldn’t be violent anymore when in actuality all it took was the right anti-psychotic medicine. It’s no wonder why my brother Luke fell into following rules so easily and becomes upset when they are broken. I have to fight against it myself with my thinking if I do everything right I won’t get sick, etc. But hey, nothing about my childhood was normal, except maybe my grandma. To think ironing could trigger violence. How flipping crazy is that?

Anyway, I am excited all my best friends are coming to the wedding. I’m happy for the family members attending, even the wild cards. I’m glad Angel is starting to relax a little and enjoy the last couple of days before the wedding. I know it’s going to go by fast now. I’m glad to report everyone is healthy (except Arabella with mono but she will be there!). Only 3 more days to go…

Gratitude week 107

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I’m not going to lie, it’s been a shitty week. I started the week out with COVID and ended the week by putting my dog to sleep. So…I think I’m good on my share of problems for awhile. Oh, if I could bet against my luck I would be most fortunate indeed. Anyway…

  1. About the only good thing about having COVID is now I don’t have to worry about getting COVID.
  2. I’m glad my kids were all able to say their final good-byes to our dog. They all gathered around our dog when the vet came out to put him down.
  3. I’m grateful all my children are in good relationships and their significant others really helped them through the process.
  4. The vet who came out to our house was kind and compassionate. She did everything she could to be gentle to ease our dog’s suffering and our own.
  5. I’m grateful for the 14 years we got to spend loving our dog. I feel at such a loss, my kids lost their childhood pet and their childhood is over. It’s a strange feeling, the regret of not being able to go back. It’s over. It’s final. But it was good.
  6. I’m grateful that Arabella’s boyfriend is going to be taking her pet frogs home to his house today. I have been taking care of them since she moved out and it will be nice to give them back to her.
  7. I have an appointment to get my haircut today and just got my nails done for the trip.
  8. I am getting excited to get away for a couple of days. I seriously think betting against myself would be a wise plan in Vegas. But I’m not much of a gambler.
  9. I was FINALLY able to get a good night’s sleep last night.
  10. It will be nice having high temps in the mid-60’s for a few days. Right now the wind chills are below zero.
You will be missed, my puppy!

Trips to the dump

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I thought of my grandpa the other day as a baby bee brushed against my fingers.

Things fell apart the summer I turned 13. My grandpa fell trying to get out of bed in the morning and spent the summer in the hospital trying to walk again. It was the year after my brother Matt spent the summer in the hospital. My grandpa wasn’t the same after that. He was diagnosed with a rare autoimmune disease. Before he came home a wheelchair ramp was added and the bathroom was remodeled to accommodate a wheelchair. He never walked again.

Maybe that was the year things got harder for me. My grandma was one of Matt’s biggest caregivers and now she needed to take care of my grandpa. That put a lot of pressure on me and I stopped my social life before it really even started to help take care of my brother.

But before grandpa got sick, we had some good times together. He used to take me fishing. I must have talked his ear off because he told me I was scaring the fish away with my incessant chatter. Many years later I found out this wasn’t true.

We also had our occasional Saturday morning trips to the dump. Grandpa would back his truck into our driveway to pick up our garbage which wasn’t a lot since we had a burning barrel and a compost pile. My parents are hoarders, so only true garbage was thrown away like used cat litter. Although sometimes that was used in the winter on the ice. Everything had a use or purpose even when it didn’t. Some rooms of the house and even the garage were dedicated junk piles. It was one of the zillion reasons I didn’t have friends over often. Apparently most people seem to find hoarding off-putting.

But anyway, the trips to the dump with my grandpa were wonderful. He was friends with the dump man who was also a hoarder. I swear the guy would go through everyone’s garbage to find treasures to take home. There were bags of garbage everywhere, some were burning in a big pit.

The dump was sandy and smoky. It wasn’t a good place to be on a windy day. But when there wasn’t wind, there were bees. The dump man said I didn’t need to be afraid of the bees. He told me to put out my finger and the little bees would land on it. I did and they tickled my finger. Since then I’ve never been afraid of bees or wasps and they have never hurt me. Of all the things I am afraid of, I’m not generally afraid of animals. My dad was afraid of spiders so he never used them to terrify me. Win, win I guess.

My grandpa and I made several trips to the dump because we were looking for the perfect bike. The dump man started setting aside the bikes for us that others threw away. Then one day we found the perfect piece of junk. Grandpa lovingly painted it purple, my favorite color. He put on a new chain, new tires, and a new sparkly purple banana seat.

One day I outgrew the little one speed bike. My last birthday before grandpa got sick, he took me to the store to buy a bike kit so he could put a ten speed together for me. It meant a lot because he bought it new and also because he took me to the store to buy it. That was the first and last time I remember my grandpa going inside a public place. He refused to leave the house after he was wheelchair bound. We had to fight with him to go to the doctor when he needed to go. He didn’t even go to my wedding. He would even panic if grandma was gone for more than an hour or two.

So when I saw the little bee buzz by the other day, I put out my finger to say hello. It instantly took me back to the trips to the dump. How crazy to have the trips to the dump be one of my fondest childhood memories. I am thankful for that though. My younger brothers barely remember the good times with grandpa before he was in a wheelchair.

 

 

The first fire

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I never heard my mom cry like that before. It was the deep howling sorrow that was saved for behind closed doors. I could almost peak out the window she was staring out of if I stood on my tiptoes. The night sky a glowing orange haze in a hue I never saw outside before. Together we watched her childhood home burn down.

I went with my mom once to see her old house the year before when I was 3. I’m not sure how I remember it. Strong emotions of my mother typically elicited sparks of memories in me. There was a long dark inside staircase that went upstairs to the main floor of the house. There was a bright average sized kitchen with a window above the sink that I could imagine her mother standing at with her back to me. I never saw my grandmother’s face before but I was told my mother looked just like her.

We had to walk up one step to go into the living room from the kitchen. I found that rather strange. I saw the bedroom my mom shared with her sister Jan. It looked as small as a closet. I imagined my mother playing in that room with her one doll. Mom always said that Aunt Jan was messy and my mom was the clean one. They seemed to have switched roles. Aunt Jan never entertains because people get her house dirty. My mom never has people over because she is embarrassed by her clutter and hoarding.

I wonder now if she imagined her mother was still alive inside of that house cooking supper, washing dishes, or just living a normal life every time she used to walk by. That was the only house she remembered her mother living in. Her mother died and her family moved far away, but she remained in that small town.

My mom more often than not on nice days took us for walks by her old childhood home. Every day the memory of her mother was still alive inside of that house. I’m sure she thought of that when she took us on walks to visit her husband’s mother.

Until one day the house burned down and even those memories faded away. She couldn’t imagine her mother happy inside the house when the house was no longer there. It was almost like she lost her mother again.

Especially special

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Several weeks ago I attended my daughter Arabella’s first choir concert of the school year. It was our foreign exchange student Clara’s first choir concert ever.

I sat down in the theater only to have a teenage girl with Down Syndrome sit in front of me. In all honesty, sometimes I get triggered by people with special needs being a SN sibling. It brings up a smorgasbord of emotions.

The girl was so excited about the concert that you might think she got front row tickets to see Justin Bieber or whoever the hottest pop star is now. She waved her arms, clapped loudly, and cheered for every performer. Her family catered to her the whole show as if the show was about her. I didn’t find it too annoying, just triggering.

At this point, I thought, “Well, that figures!” because a few days before I was trying to free up some of my repressed anger related to being a SN sibling.

I personally think it is wrong to sacrifice for a SN child at the expense of the other family members. Children should be treated as equally and fairly as possible. It’s not fair to SN children to treat them like something is wrong with them either. I understand that SN children oftentimes need special care. I’m not talking about that.

I’m talking about parents that expect you to treat your sibling like every day is their birthday. It’s almost expected by everyone that you treat them like royalty because their disability royally sucks! You are supposed to be the one waiting on the sidelines to cheer them on when they participate in the Special Olympics. You are selfish for wanting to live your own life.

We went when he wanted to go. We stayed home when he didn’t. It didn’t matter how long it was planned. He was the god we were expected to worship. The life of our family revolved around him.

You are expected never to fight with your SN sibling. What kind of monster are you? You are expected never to feel jealous when they get all of the attention. You can’t cry when they hit you because damn you are so lucky to be normal. It is almost expected that you become a special education teacher because having a SN sibling changed your life. How noble.

You shouldn’t feel angry because your parents couldn’t afford your swimming lessons because they had doctor bills to pay. You shouldn’t feel angry that you had to drop out of the show because your brother had to be hospitalized. Why are you upset you lost your best friend because your brother attacked her? You can make more friends. He doesn’t have any friends. Why don’t you want him in your life after he hurt your child? He is your family too.

You are so selfish to want to have your own life! Ungrateful! Look at him. Do you think he will ever have a life as nice as yours? What is wrong with you? Nothing, unfortunately, I am normal.

These things cross my mind when I see you cater to your SN child. Yes, I am selfish. Yes, I am a monster for feeling this way. I am not here to please anybody. In fact I might like you more if you hate me like I hate me. Just like everyone else and their damn expectations. Blah, blah, blah…

Blogging therapy is going well today. Yes, I can see that you are making progress processing your anger.

The show was over. Most people left the theater. After things cleared out, I stood in the aisle and took pictures of Arabella and Clara. The SN girl pushed by me and yelled at me to get the hell out of her way. Her family giggled as they passed me as if her rude comment was the cutest thing ever. Did I not notice the sparkly butterflies and rainbows that she farted out of her ass?

I would like to think that most parents would not shrug off their teenager treating a stranger rudely in public. But she is special, so she shouldn’t be corrected for her bad behavior since basic rules of etiquette apparently don’t apply. Isn’t everyone special and unique just like everyone else? I think I was taught that in school. Or is there a class of especially special specials??

My brother did things like this in public and worse. Sometimes he would physically attack strangers, children. Treating people poorly should never be acceptable. There should never be an excuse for that. That is what makes me angry. At the very least, teach your child it is not acceptable to treat people this way. Make them apologize. Apologize for them. Whatever, at least act sorry. I didn’t find it funny.

Of course, it had to be me that this happened to.

But I suppose if I was like everyone else, I would’ve brushed it off and forgotten about it already.

 

The path

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It’s very important. That is why I got up before everyone else did, so I could tell you.

I am on a narrow path. It leads from my house to the backyard where there is a clothesline that I can hang my laundry on. There are two people on my path, a man and a woman. They walk down the path twice a day at the same time everyday. I’ve gotten used to them, their patterns.

The path is very plain. I only have the things there that I need to survive. No more, no less. One day a garden light is put a little way off my path. I think the two people put it there because they are the only ones I ever see on my path. But I didn’t see them do it. I really don’t know because they never speak to me. They just walk in silence across my path in the morning and disappear until they walk back in the evening.

Nothing happens for days after I notice the change. When I think it is safe to veer off the path to look at it, it becomes a vicious snarling dog. Every couple of days I notice another garden light is added. I am curious, but I have to get used to it first. After a while it almost belongs there and feels safe. Maybe I can look at another one just outside of the path I must not stray from. Once I do, instead of a vicious dog I see a golden retriever. I am very frightened because I can’t seem to differentiate safety from danger.

I cry out in terror. Seeing the dog, any dog, triggers the panic in me from the vicious dog. The people show up at an unexpected time and laugh at me because I am afraid of a harmless tail wagging golden retriever. I feel frightened and alone.

It was safer to never veer from the path. Instead I needed to be more rigid and structured to feel safe and find comfort. I must follow the same routine, the same pattern. Everything must stay exactly the same. Nothing will change and I will be safe. I’m not sure the people are safe, but they are predictable if I stay on the path. If I try to leave it, they are not safe.

Every day there are more garden lights. I don’t even notice them anymore. I stay within the boundaries. But one day something scary happens. The wind blew my laundry off the line off my path. I was responsible to care for my laundry. It was part of the routine that must be followed. I now have a dilemma, a conundrum of sorts. I have to grab my laundry, but I am terrified to veer off the path. Maybe if I grab it as quick as I can and come right back then nothing bad would happen.

Nothing happened when I grabbed my laundry, except I began to notice the world outside. It changed me. I began to see things differently. I went back inside my mansion and noticed for the first time that I was only using a few rooms. There were garden lights outside of doors that I was afraid to even go into. There was so much more out there to see, to be, if I didn’t let fear stop me.

Anxiety has a way of trapping us in what we know. It was important to cling onto at one time in order to survive. Now I see a whole new world out there to explore. There are rooms in my house I have yet to go in. Fear always stopped me. I clung to structure and routine. But there is so much more. Maybe it will be safe now.

The dream awoke me. It all makes sense now. I must write this down.

The floodgates have finally opened and poured onto my paper. I can write again. I am back.

 

Unrest

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I don’t want to do this anymore, this whole life thing. I want to hibernate somewhere, hidden away under cover.

I don’t know how I got to this point. I’m just tired of it. I’m just tired.

I couldn’t fall asleep last night. It was after midnight before I silently fell into slumber. This happened twice this week although this type of insomnia rarely happens.

I couldn’t stay asleep last night. I slept restlessly. I awoke several times. At 4 AM I had to go to the bathroom. This is the type of insomnia I call home.

I had one of the most intense nightmares that I had in a long time. I was a little girl. I was brought to an empty house because there was going to be a lot of blood, my blood. I went willingly because I knew I had to be the sacrifice. I was afraid. I was going to be hurt badly, but I would live through it. Before anything happened, the owner of the house came back. She looked like a grown up me. I told her that she needed to leave because she would get killed for being there. She tried to help me, we ran away. She was killed and I hid in the closet terrified knowing I would be next. Now we both were going to die because she tried to save me.

I awoke at 5:30, less than an hour before my alarm was going to go off.

Today is the day that my video is being posted. I didn’t know it until this morning. I hate the video. I want to destroy it. I feel so anxious about it.

Why do I have this need to tell everyone about the things I’ve experienced? I just don’t want to do this anymore. I don’t want to write. I don’t want to blog. I want to disappear off the face of the earth like I never even existed.

I thought of strange things. I remembered the book my mom used to read to me about Toad and Frog. They left the door open and winter came in. They were cold, sad, and lonely. They made soup out of their tears. It was almost as if the hauntingly sad child me came for an unwanted visit. But to cast her away would destroy us both.

I struggled to find the motivation to do everything I needed to do. Some days are like that. I’ve been stirring up my demons. But I was able to make it through. It is hard to do when my body and mind doesn’t let me rest.

Maybe tonight I will sleep.

Unrest.

 

Done, done, and almost done

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I am so relived that all of the difficult things over my head this month are now done.

I finished my first 50k. I wasn’t sure I could do it. Being anemic and having a rough summer health wise made me really question my ability to get it done.

Today I sent in my video to the local autism chapter about what my childhood was like being a sibling of someone who was violently autistic. I also gave tips to parents on how to support their non-autistic children. I created a new Facebook account and a support page for siblings.

Making the video was very difficult, not just emotionally either. Somewhere in my mind I expected that I would look like someone on the news. I would be smooth, polished, and look like I was 25. The joys of being a perfectionist!

I found that I couldn’t make the video when other people were home. My husband walked in the room while I was recording and I had to start over. So I decided to tell everyone when I was recording to not walk into the room. But I could still hear the bass from my son’s music. The beat of the music banged in my head distracting me. I was paranoid that everyone could hear it.

Then I waited for the small window of time where I was completely alone in the house. I was still hoping that the dog wouldn’t bark. I created 3 fifteen to twenty minute videos on my phone. After I was finished, I watched the videos. They were okay. I was very critical of myself. Man, do I look old and tired. Look at those big black rings under my eyes. It was hard talking for that long in front of a camera without a script. Plus I was never one to like hearing recordings of myself singing or speaking.

Then I had problems sending the videos to my contact person because the videos were so large. It took me 6 days to figure that one out after a day and a half of actually making the videos. I wanted to wear the same shirt, hair style, and makeup to look like the whole thing was effortless. But trust me when I say it was not. I deleted more recordings than I kept.

Right before sending them out, I had a moment of sheer panic. It’s that awful feeling that you get before doing something risky, scary, but exhilarating. Would the videos be good enough? Would my best efforts suck? What would my family think? I feared success. I feared failure. My thoughts fluctuated between what I created sucked to everyone is going to know everything I never wanted anyone to know about me. I wanted to delete all of the hard work I put into this.

It is finished now. I sent them. Whatever happens, happens.

Next week I will go back to writing my book. I finished my research. I read about 40 journals written my myself, my mom, and the schools my brother went to. I read countless letters, notes, and articles about my brother. I even went back and reread my blog searching for clues. It’s done. I have everything I need to finish the book.

I am done, done, and almost done. If I heal and help other people in the process, it is worth it!

Hurt again

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I felt a burning fire rage within me today. I think it was the combination of a lot of different things that ignited the fiery red flame.

Yesterday I wrote in my book about one of my most painful early adult experiences. Previously in my writings, there seemed to be a separation between what I was saying and how I felt. There has been an insulation protecting me from the words. Yesterday it was removed and I felt angry.

My mom always told Matt that it wasn’t his fault he was violent. Sometimes she told him he was having a seizure after being exposed to loud music. Most of the time Matt was told that he was having an allergic reaction. It was an accident and not on purpose. The school told my mom that they wanted Matt to be told it was wrong when he hurt someone and to have consequences for his negative behavior.

That never happened. Six months later Matt got arrested at school for assaulting his teacher’s aide. She was pregnant at the time and it took 2 adults to get him off of her. Matt’s aide was my childhood best friend Shelly. I was the maid of honor in her wedding. We were best friends forever, or so I thought at the time.

When I got married, Shelly wasn’t invited to the wedding. I had to choose between my family and my best friend. My mom had the attitude of oh well you were growing apart anyway. But if we grew apart and the friendship ended it would’ve been my choice, but it wasn’t. It tore our whole friend group apart.

It was very painful to lose a best friend, all my close friends really because my brother attacked her.

I was rage cleaning this morning as a result.

I had to take a step back from running. My Boston marathon friend contacted me to go running again. We ran 8 miles together at breakneck speed. Then she told me that I really needed to work on hill training. I pushed it really, really hard and ended up hurting my ankle. Now just walking gives me pain.

Something else happened too. Someone I know told me the story of how her son recently fell asleep while driving and caused a fatal accident. After hearing her story, I started feeling anxiety driving again. It started by not sleeping well one night, then driving Arabella and her friends somewhere for her birthday. I started to worry that I would fall asleep and kill someone too. For the last couple of weeks, my driving anxiety has been back and I am worried that it is going to turn into full blown anxiety again. I worked so hard to get over it.

I have just been feeling angry and frustrated by the things I have experienced and the things I am experiencing. My son had some friends overnight and I waited until 1 PM to vacuum near them. I didn’t say one word to them but they seemed so terrified of my anger that they went from a dead sleep to packing up all of their stuff and leaving.

My son saw me rage cleaning and asked if he did something to make me so angry. I told him that it had nothing to do with him really. He pressed me for more details and I ended up telling him about my childhood for the first time. He is almost 19 and will know all about it when I publish my book anyway. We had a really nice conversation for almost 2 hours. In that time my anger dissipated.

I’m not sure what is going to happen, but I plan to keep writing no matter how hard it is or gets. Sometimes it is very hard to stir up my demons because I don’t know how I’m going to react. This has been my biggest obstacle so far, but I refuse to give up. After all, that is how I hurt my ankle. Sometimes I need to learn when it is time to ease up. That’s never been my strong suit.

It sounds kind of funny. Most people complain that they don’t have my determination, but all I want is the ability to relax and not be so hard on myself. So here I am, hurt again.

Allergy sufferers

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This morning my blog friend LA wrote a post that really hit the nail on the head for me about allergies. LA was on a train and sat next to a woman who said she was allergic to LA’s perfume. LA got up and moved seats. But should LA have catered to the allergic woman or should the allergic woman offered to move? Whose shoulders does that responsibility fall on?

All my life I had to cater to my autistic brother’s allergies. He would become violent if he was exposed to allergens. That is what I was always told and that is what I always thought. But as I have been writing my book, in retrospect I have been able to see the situation with my blinders off.

It’s not that I don’t believe that Matt has allergies. I find it hard to believe that allergies could cause someone to act violently towards another person. He doesn’t sneeze, cough, or break out in a rash. It is possible that an allergen could cause a physical symptom that causes him to be irritable and lash out. But I no longer believe that smelling someone’s perfume could cause him to be violent.

Matt acted violently because he was severely mentally ill. He needed to be told that his actions were wrong whether he was capable of controlling them or not.

Meanwhile, we did crazy things to cater to Matt’s allergies. I wasn’t allowed to wear perfume. My parents got rid of their wood stove. Newspapers weren’t allowed in the house. No one was allowed to park in the garage for awhile because of auto exhaust fumes. My parents replaced their new curtains (new smells) with old blankets. We had to evacuate if the neighbors were spraying their fields. There were many other things as well that were very inconvenient and extreme.

But, guess what? With all of our catering, Matt was still violent.

I don’t cater to everyone anymore. It was hard at first since it was so ingrained in me to do so. Now if I host a party or holiday and I am expected to do all of the preparation, I make what I want and tell people if that doesn’t work for them to bring what they can eat for themselves. Believe me I’ve tried and I just about went crazy. This person is gluten free, the other is dairy free, another black pepper free, pork free, organic only. I wish I was kidding.

I’ve learned that the best way around it is to tell everyone what I am making and if that doesn’t work for them they can bring their own food (or host the party themselves!). I’ve made peace with the fact that I can’t please or accommodate everyone.

I do feel bad for people who are miserable from allergies. But it is also inconsiderate to  expect others to cater to you if your allergy is not life threatening.