- It’s been one of those weeks and I want to think everything that happened worked out for the best.
- My son’s girlfriend was having issues with a guy harassing her at work which has been resolved and she is able to keep her job.
- I met my friend Jen out for lunch. She had her yearly cancer screen this week and her cancer has not progressed and continues to remain stable which is great news.
- This past week I redeemed the spa package I won and had an afternoon of pampering with my daughter Angel.
- I got my new glasses.
- Volunteering with my husband and going out to eat afterwards with the center’s manager and his girlfriend. We all seem to get along really well.
- Paul and I went out to eat with my brother Matt for his birthday along with my mom and his autism group and care staff. I’m grateful that he is involved in a really great program that goes out into the community to work on social skills.
- Ladies group.
- Paul and I went out to eat and saw a local favorite Pink Floyd tribute band perform.
- Tickets to a comedy show.
- Angel had her annual work review and they gave her a hefty raise.
- I attended a volunteer orientation webinar through the U.S. Fish and Wildlife service to volunteer this summer to do restoration work.
- I set up an appointment this week to get my third tattoo.
special needs sibling
The squeaky wheel
Last Wednesday my mom came over. She walked in saying she told my dad she was going to move back into my house if he didn’t take a shower. In an instant I felt more stressed. She lived with us I would guess somewhere around 4 months. My dad showering was always a fight. If it was up to my dad he would never shower again. One time he didn’t shower for a whole year. It is a topic of marital conflict that I would bet most of your parents never have had.
It wasn’t long after my mom showed up that the police called her. She found out not only one, but two of my brother Matt’s caregivers in his group home stole money from him and his roommates. It broke my mom’s heart because she really liked one of the caregivers because she was good to Matt. Not only that, but my mom found out that someone most likely a caregiver stole my brother’s cell phone. My mom got a cell phone bill for hundreds of dollars on Matt’s phone for texting and data. My brother doesn’t read nor write. He said he couldn’t find his phone for the last couple of weeks. No wonder why, it was stolen.
This was very upsetting for my mom. She is going through so much. Sadly, it’s nothing new. From what I heard the police were going to arrest one of the women as they have a low tolerance for people that steal from the disabled. My mom needed to go to the police department the following morning to sign a subpoena to get the cell phone records. It never ends for my mom. The week before Matt was exposed to COVID and his roommate had pneumonia.
As my mom was dealing with some major problems with her special needs child, I was dealing with some major issues with mine. I knew that my mom was not as concerned about me in that moment as she was with everything going on with my brother. I spent my whole childhood pretty much used to that. My mom always said the squeaky wheel gets the oil. Some way or another, Matt was always that squeaky wheel. The other three tires never made much noise in comparison.
The last year and a half Arabella has been that squeaky wheel. Lately, she is all we ever talk about. She was sending me upsetting texts while my mom was busy with everything going on with Matt. Lately Angel picked her maid of honor for her wedding. She was excited because she was also picked as the maid of honor for that friend’s wedding. We were happy for her, but then the conversation quickly switched back to the problems we are currently having with Arabella. Angel said it wasn’t fair. She was doing great but no one ever focuses on her.
I understand totally as a special needs sibling. Tonight Paul and I are taking Angel and her fiancé out to eat to thank her for keeping a good eye on the house and pets while we were on vacation. We try to celebrate the good, but in all honesty everything going on with Arabella is bringing us down. There isn’t a lot of joy in my life right now. On a scale of one to ten I would list my joy rating at a zero. One of the only things that is keeping me from jumping off a cliff (or should I say the Kennebunk bridge) is looking forward to my daughter’s wedding.
Arabella’s time at the hotel was running out. She wanted somewhere to stay and didn’t want to stay with us or with my parents because the environment was way too unhealthy. She wanted to stay with my best friend’s family. Cindy has an 18 year old son living at home. I told my best friend not to let her stay there. If my daughter makes false allegations against her son, or husband for that matter, it could ruin their lives and I couldn’t live with that. Would she end up living in a car? Winter is coming. Then she ‘accidently’ sent me a text conversation she had with someone which detailed her overdosing. Maybe I’ll share that tomorrow. It’s hard to read though as a parent. Every day I expect a phone call telling us she is dead. That’s my life right now.
She doesn’t want anything to do with us, she said. But then she asked me if I would take care of her frogs. I have been but I don’t want to. I feel sad because every time I look at them I think of how they were a gift to her to show her how much we care. I don’t want her to take them because I am afraid they will die because she can’t even take care of herself. As I went to the pet store last week for more crickets, the guy who worked there forever commented to me how happy he was to see pets in good homes like mine. I almost started crying. I have a good home?? It’s so easy to doubt that anymore. I’ve been told how awful I am that I am almost starting to believe it or think that others see me that way.
How do people view me? Am I still the kind calm person with a sad smile? Or do people just see me with the weight on my shoulders that brings me down? Do they see the angry lady who beats her fists against the walls? The sad lady that almost cries in pet stores? Or do they see the real me in there somewhere? The me I can’t even see anymore. I’m so beyond broken at this point. Dealing with this stress day in and day out is killing me. But I’ve been through hell before and kept on going.
Threats of imaginary monsters??
I was never safe. Matt was autistic/schizophrenic. He was the most dangerous when he was hearing voices. You could almost always tell when he was hearing voices because he would mutter back to them. Sometimes he would laugh in a way described as purely evil like a villain in a superhero movie except without the superhero. He was in his own psychotic world he couldn’t easily be pulled out of. He would become incredibly agitated in this state. His ears would turn red and his eyes constrict as if possessed. He was small but had superhuman strength in those moments. It was a matter of time before he hurt someone. Those were the days when we couldn’t leave the house with him. It was too dangerous.
Matt was also violent when the voices were silent especially when he had to do something he didn’t want to do. The most common thing he would do was pull someone’s hair, mainly mine. When I say he pulled my hair, it was more than a little tug. He would latch onto a fistful of hair and yank while his victim screamed trying to get away. I would’ve thought I would’ve lost more hair than I actually did. Typically it would take at the optimal two people to restrain him and try to peel his hands off of their head. I’ve done it many times. I’ve also been the victim of his attacks countless times because I was the only one in our house that was little and had long hair.
There were also times Matt would attack for no apparent reason. Here are some of the things I’ve seen him do as a child to myself and others, some strangers. He gave black eyes, bloody lips and noses, head butts, scratched up arms, pulled hair, kicked, poked eyes, slugged just to name a few. I was often seen sporting bruises and clawed up arms. He threatened me with a knife. He tortured my pets. He was so violent that he was not allowed in school for several years, the school sent a teacher out to our house. Hence the home school years. The police were called when he went back to school. He was arrested. Somewhere there is a mug shot of him.
Matt being violent was a common (at times multiple daily) occurrence throughout my childhood. He ran around like a wild child. We were not safe day or night. My mom took him to every doctor she could find in desperation but it wasn’t until he was in his 30’s that an anti-psychotic medicine removed his violent tendencies and rendered him docile.
Being autistic, Matt was extremely hypersensitive. He could not tolerate his teeth being brushed. This was very problematic because his teeth were rotting. My parents tried the best they could but he usually screamed every night when it was teeth brushing time. Sometimes my mom couldn’t do it and asked my dad for help. My dad would get angry, manhandle Matt and forcibly brush his teeth. This made Matt incredibly agitated. He didn’t dare attack my dad because my dad would give it back. A lot of times Matt would harm himself mainly by beating his head over and over with his fist.
There were journal accounts written by my mother of Matt attacking our sleeping youngest brother Luke. Imagine a little child awoken from sleep by being hit with a fist. Sometimes Matt would come into my room at night when I was trying to sleep with his fist raised at me.
But here is where I was lucky. Matt and my two other brothers had to share a room. I had my own room. But being a child, I was too frightened to sleep with my door closed and locked. There were demons and monsters hiding under my bed and in the closet. There were murderous dolls in my room just waiting for me to close my eyes. There were kidnappers outside the window. There were things that could get me if I slept with my door closed. As a child I was so afraid of the imaginary things that I was unable to protect myself from the real threats.
Now I am an adult and have long outgrown the threats of imaginary monsters. When I am up north with my extended family I am usually the last one to go to bed and the first to arise. Unconsciously I must feel safer that way. To this day I am a light sleeper and awake to every noise hyper-vigilant of every possible threat. I wish I could say that I outgrew the need to protect myself like I outgrew the threats of imaginary monsters. My body never overcame the fear that I was not safe.
But I am safe now.
Gratitude week 86
- Arabella has recovered from COVID and is back at work.
- Everyone else in our house tested negative.
- Just to be on the safe side, I cancelled the plans I had for the weekend and had a nice weekend at home.
- I finished a couple of books this week. It’s been a long time since I could say that I read more than one book in a week. I really enjoyed My Sister’s Keeper. Although a piece of fiction, it really made me think about what life was like with a disabled sibling. The disability aside, I remember feeling as if I didn’t matter. There was always something more important than me. I’m not saying that it was always a bad thing that my mom favored Matt, he did need her more. But things were always chaotic. Nothing could be planned or counted on in case Matt was having a bad day. Unexpected change is very triggering for me. I’m trying to have more compassion for myself in that regard as I read stories of other siblings having a hard time cancelling plans they were looking forward to because their sibling was sick, etc. I’m starting to go deeper to the more subtle effects the little things had on my life. It makes more sense why I respond the way I do if I start delving deeper.
- I ordered 4 more books, three of which are memoirs about people struggling with mental health issues.
- To a great weekend spent with my daughter Angel at home reading, writing, swimming, and watching movies.
- For having an adult daughter that is more like a best friend.
- Indian takeout food. Angel and I both ordered cheese naan and chicken tikka marsala. It was excellent!
- Summer!
- For health and healing in general. Last week was really hard because I didn’t know what was going to happen with the sickness in my house.
The full story…coming soon
I got invited into the popular group once in middle school. They gave me a handful of candy. I threw it away.
I could never bring them to my house anyway. The outside of the house was brick, big and beautiful. But inside was another story altogether. I couldn’t do slumber parties and sleepovers.
My dad roamed the house in his underwear. He answered the door that way. On occasion, he mowed the lawn that way. Sometimes he would even get the mail that way. The truth is that he was more interested in porn than his own wife and kids. He never hugged me, held me, or told me that everything would be okay. Maybe it was a good thing he had an aversion to touching me.
Our house was a hoarder’s paradise. Piles of magazines and papers littered all seating surfaces, our table, and floors. My mom hoarded food so there was always rotting food in the fridge. There were cupboards full of food, a fruit cellar, freezer upon freezer, refrigerator upon refrigerator. But we knew the newest food was always in bags on the dining room floor. There was always a stack of unwashed dishes on the counter full of you guessed it rotten food. The whiff of rot hit you as soon as you entered the door.
If that wasn’t bad enough, there was always pee on the bathroom floor and a dirty sink. My dad was a greasy guy in more ways than one. He rarely showered and criticized us for showering daily as if we were the strange ones. My dad didn’t brush his teeth but wiped them on the hand towel so I always had to strategically plan where to dry my hands in a spot I thought would be the cleanest. I don’t know how I ever survived the 8th grade hand washing compulsion.
Then there was my brother Matt. He was the school ‘retard’. That’s what my classmates called him anyway as they mocked his bizarre behaviors. He heard voices that told him to attack other children and he listened. He ruled our house and my mother bowed down to him. Anything for Matt. Never mind her three other kids.
We had crazy rules to live by for the sake of Matt. For example, no one could come into our house that was wearing perfume. That is why you could find me before middle school started ratting my hair in the middle school bathroom along with the girls that changed their clothes into outfits not allowed out of the house. My unscented hairspray had too much scent. For awhile we had to brush our teeth with peroxide and baking soda. We had to shut the windows if there was an east wind blowing auto exhaust fumes into our house. We didn’t have A/C back then. My mom even took down her brand new curtains because of the formaldehyde and hung old blankets on the windows. We had to take shelter if a neighbor was spraying his fields. The air purifier ran constantly. But none of those things stopped the voices or the attacks.
So you can see I had to reject the popular kids before they had the chance to reject me. I hand selected a few close friends but in the end I lost them anyway because of Matt.
I hated my life. I didn’t belong. To make matters worse, kids looked at the outside of my big brick house and thought I was richer than they were. In high school I drove a bright red Firebird. I was an exceptionally beautiful child voted most likely to be a supermodel by the graduating class which did nothing to help me fit in when boyfriends of potential friends flirted with me. People envied and hated me for the things they saw outside. Things that I didn’t have any control over. In a heartbeat I would’ve given it up to just have a normal healthy family.
The kids at school could never see the pain and sadness inside of me. After awhile I stopped caring about what people thought. I hated small talk and following all the stupid rules anyway. I said screw them and became a rebel, strong and unreachable. When I got hurt, I retreated to the corner and licked my wounds alone. I had to take care of myself because no one else really cared.
I am still the same person. I try to play the best game with the hand I’ve been dealt. On the good days, I thank God for all my blessings. On the bad days, I reject God because I feel he has rejected me. I can’t sing that God has been good to me all my life when I don’t believe it. Why do I feel like God hates me when I try hard to be a good person? I spent a lot of my life trying to be perfect but it didn’t matter.
What is the purpose of pointless suffering? How has it made me a better person? How does it help anybody else? There will always be a part of me that feels alone no matter how many people are around. Maybe God will always be off in the distance and uncaring just like everybody else. I can’t seem to reach him either. I could never find a way to connect to normal people. My life has been way too crazy. I’ve had very different life experiences.
I will never be the motivational speaker that others seem to be. I am not the one who will tell you my anxiety went away by praying more or that my depression was cured by positive thinking. I don’t have the answers, just more questions. I am a broken person that will never be put back together right. Before my brain finished developing I experienced trauma more than compassion and love. I didn’t have that one teacher who made a difference in my life.
What can I say? I have a lot of trust issues. Who else has my back better than me? How am I supposed to trust?
Maybe someday I’ll get it right. Maybe someday I won’t feel angry anymore. Maybe even someday I will trust. But one thing I do know for sure. Soon I will be telling the full story. And it’s far from boring…
Gratitude week 69
- I’m grateful that my tattoo healed nicely.
- I’m grateful that I can now swim again. I had to wait while my tattoo healed. So basically I did not exercise at all since my tattoo. The weather has been cool and crappy. It even snowed a little since last week so I didn’t want to run outside. Plus I was busy taking my mom to appointments. I’m hoping for a better weather week and finding the time to exercise.
- Breakfast with my BFF.
- A mother-daughter date with Angel to go thrifting. I didn’t find anything too terribly exciting but it was nice to get away.
- My brother Matt came over for the weekend. Although I stressed about it, things went better than expected. It was nice to take some time to myself so I don’t go absolutely crazy.
- For rides on the 4-wheeler with my husband while he does the spring clean up on the yard.
- That my daughter Arabella seems to be making a lot of progress in residential treatment.
- This is a big one…I’m grateful that I survived getting a crown this week with minimal pain. I had laughing gas for the first time. Can you believe that instead of laughing I cried? I’m grateful for a dentist and assistant that went out of their way to be compassionate towards my history of experiencing dental pain and trying to make me comfortable through the process.
- The things I was really stressing about this month, the tattoo and crown, are over. I’m grateful for the relief that I feel that the fear is behind me.
- I’m grateful that my mom, Paul, and I were able to play a game last night. Things have been incredibly stressful since my mom moved in so it was nice to have a break from the heaviness.
Gratitude week 26
- After doing an iPhone update my phone started glitching out. I thought I was going to have to break the bank and buy a new phone. My daughter suggested turning the phone off and on again. I’m grateful it worked and I don’t have to get a new phone for awhile.
- Summer!!
- My mom ended up in the hospital this past week. I’m grateful that routine bloodwork for her physical caught a problem before it became a bigger problem. Because of her health concerns, I took my brother back to his group home for the first time since the pandemic. I’m grateful because that means a little less stress for her.
- My daughter didn’t come home for Father’s Day weekend because she was concerned she may have been exposed to coronavirus. Thankfully the COVID test came back negative and she was able to come home this past weekend.
- We took a ride around town in my daughter’s new Jeep with the top and doors off. It was a lot of fun. I’m grateful that I can still have fun even during hard times.
- We had a bon voyage party for our foreign exchange student Estelle who will be going back home the end of this week. All she wanted to do was light off fireworks for her birthday but we couldn’t because of the weird tropical storm that hit Wisconsin. We were supposed to get severe weather on the night of her going away party but just got a few sprinkles so we were able to light off fireworks.
- I’m grateful that I was able to spend time with all my kids this weekend laughing and talking.
- I’m grateful we were able to take a young lady with cancer sailing. She had two wishes, one was to go horseback riding and the other was to sail. It was a perfect night to make her wish come true. She was so happy that it felt nice to do something to make someone else happy.
- I’m grateful for a long conversation with my brother Luke. It really is nice to have someone to relate to.
- I’m grateful that our new business is doing well.
Caring for Matt
It’s been at least a decade since I took care of my autistic brother Matt in my house. A few things precipitated this change. Initially I stopped providing weekend respite care for my parents after Matt was violent towards my daughter.
There may have been a few times I took care of Matt and my mom took my kids although it wasn’t much of a break. It was difficult raising 3 little kids without having much for family support. My mom had to take care of Matt. My brothers didn’t live close. My mother-in-law could barely handle raising the one child she did have, my husband. I found myself bitter towards parents that could dump their kids off and get away every now and then.
But the biggest change for me as a care provider for Matt was when my parents placed him in a group home. I was no longer needed to help out, until now that is. Matt’s group home was closed since the virus started. It is now open but if he goes back this month, he is not allowed to leave.
Originally my mom wanted me to stop by the house every night to make sure Matt was okay under my dad’s care. I told her it would be easier for me to have him stay with us for almost a week which is longer than he has ever stayed with me before.
I told my kids that Matt was coming to stay here for awhile but they wouldn’t have to adjust their lives around him. If it didn’t work out, Matt could always go home and I could check in on him everyday. One of my kids called me selfish for saying that our world didn’t revolve around Matt.
As a child my whole life revolved around Matt and if I had to tiptoe around him in my own house it wasn’t going to work. No other family member is willing to step up and offer to take him in for almost a week. That should count for something.
The whole experience went better than I expected. Although Matt is no longer violent, caring for him is not easy. He is on a special diet. I needed to make separate meals for him. At certain times of the day his medicine needs to be ground up and put into applesauce. He doesn’t have table manners. He farts and belches at the table. Sometimes he gags on his food especially if you bring a napkin near him.
He has poor hygiene. He is a messy eater and soils his clothes. He often wears his clothes inside out and/or backwards. He doesn’t change his clothes often. He refused to shower which he would need assistance doing. He wouldn’t ask for help after using the bathroom and made a mess on the floor. I had to floss his teeth and big clumps of food came out of his mouth which made me feel nauseous. He made a total mess out of the bathroom he used. In all honesty, it did trigger feelings of hopelessness in me.
Not only are my parents hoarders, but they rarely cleaned the house. Cleaning up after Matt would be like fixing up a house before you knew a tornado was going to hit. I didn’t even feel completely relieved that everything was clean after I cleaned once he left. I can’t always clean up messy feelings inside by cleaning the filth in my house.
I felt guilty when I wasn’t spending every minute taking care of him. Most of the time he would sit on the couch and stare off into space when I wasn’t interacting with him. I felt the ingrained need to please him because his life is so sad.
I found his favorite movies and put them on for him to watch. We went on walks together. I talked to him about the shared good memories from childhood. I talked about places and loved ones that long since passed. I talked to him about the things only a sibling would know. All these things helped ease his separation anxiety from my mom. I think things went really well, as good as I could have hoped for.
As a sibling, I worry a lot about what life will be like for Matt when my mom is no longer here. My parents are getting old. It is comforting to know that maybe he will adjust with my help. Matt will probably never be easy to care for but I think he would do well with me. I was impressed with how well he adapted to his new environment. It felt good to be able to help my mom out. In some ways it was nostalgic and strangely comforting for me as well.
In health
Yesterday I had my first Craniosacral therapy appointment after the start of the pandemic followed by an appointment with my therapist. Afterwards, I felt great. I finally feel like I am making some headway with my healing process.
Fixing myself has been hard because I’ve been broken so long I got used to the cracks. It’s been an adjustment. It’s created some problems I’ve never guessed it would. Now that I am healing I’m starting to notice the brokenness around me more. For example, I find myself more critical of my husband because I feel like I am in a healthier place than he is. Before he was always the healthier one.
Since I started seeing the therapist a year and a half ago, I’ve gone through several crises. My therapist wants me to focus on letting go of the original trauma that I hold locked inside my body and mind. She thinks that once I do this all of the other stressors will flow through. I liken it to Tetris. If you clear out the bottom rows before everything starts piling up, it will be easier for everything else to flow through.
My therapist told me that with three teenagers in my house life realistically won’t be stress free anytime soon. What she says is true. Teenagers are stressful even when they aren’t trying to be. For example, our foreign exchange student Estelle wants to join in the protesting. I told her that she couldn’t because I couldn’t guarantee that it would be peaceful. I am in charge of someone else’s child and I want to feel reasonably sure that the activities she is involved in are safe.
Then Estelle said she wanted to run a mile every hour for 24 hours to raise money instead of protesting. Her idea was that she was going to run alone on country roads by herself day and night. She was rather upset when I said no to that idea too. Then she asked if she could run laps around the house at night and I told her it would be perfectly fine.
I think Estelle will be frightened running around the house at night. I took my brother Matt for a walk today and we saw 4 deer. We saw the cutest baby fawn. My autistic brother Matt is staying with us for a couple days. My mom is going up north to visit with her sisters for a couple days. I’m proud of her for not living her life in fear.
This means that I will be helping Matt with daily living. I will be fixing his meals separate from ours since he is on a special diet. I will have to help him shower, clean up himself after going to the bathroom, floss his teeth, and give him his medication. He is quite used to getting his way so I want to see how he will handle being with my family for several days. Someday when my parents are gone I will probably take him in once a month to stay with me if this works out.
If it doesn’t work out, I will take him back home to stay with my dad. I will just run over every day to check on him. My husband thinks it’s funny that my mom trusts me more than my dad to take care of my brother. But he doesn’t understand that is always the way it was even when I was a child myself. I hope this experience is not triggering. But I am mother henning right now which isn’t entirely unsatisfying since it is the last thing my teenagers want.
I am in a good place right now and hopefully I can remain here for awhile.
purpose
What is the purpose of struggling?
I’ve felt sick like this many times before. There were times in my childhood where I was in so much pain that I didn’t eat much for several days. I was deemed a picky eater. My parents yelled at me, at times forced me to eat until I threw up, and threatened to take me to the doctor. I really wish they did. Maybe I wouldn’t be in the predicament that I’m in now.
Maybe if I was an only child things would be different. My brother had special needs so mine were ignored. It was selfish of me to take care of myself. I mean, look at my brother.
I can’t blame my parents for everything. I once told a doctor about the things I was experiencing and she told me it was all in my head. Maybe it was all in my head. Maybe it still is. I have that fear. Maybe I will go in for the colonoscopy and they will find nothing wrong with me. But if it is in my head, you better lock me up because I can’t live this way much longer.
At its greatest intensity, the stomach cramps feel like I am in labor. That being said, I didn’t really get a lot of sleep last night. I was in too much pain.
What does this mean for my life going forward? I’m thinking about giving up running. I am not well. My running really took a downhill (or uphill) turn last year. But I did finish a 50k. I achieved everything I wanted to. Oh my gosh, will my life come down to walking and yoga? Shoot me now!
I have to think this physical struggle with my health has some purpose. I have to think my childhood trauma had some purpose too. Why is purpose so meaningful to me? Without it, what is the point?
My husband has been very supportive. I want to thank him for giving me the best years of my life. I know we annoy each other and fight sometimes, but I can always count on him. I guess that is as close as I can get to trusting someone in this life.
I have been struggling because I want to write about what happened last summer with my husband. But I don’t want to hurt him because he is a good person. He did give me the green light, but I would choose him over being transparent with you any day if I felt it’s what I needed to do.
The whole purpose of having a personal blog is sharing my story. The ups and downs and the bumps along the way. Maybe I can help someone else in this journey. Or maybe it just makes me feel better.
My story is the only thing that cannot be taken away from me. Unless I end up with dementia, of course, which I am convinced will be my demise. But until then I am going to keep writing.
Outrunning my demons 