The first fire

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.

I never wanted the dress

Last week the girls and I went prom dress shopping. I didn’t expect it to trigger emotions in me, but it did. I am so easily triggered now it seems.

My mom and I never went prom dress shopping together. One day she just brought home a prom dress for me. It was the ugliest light pinkest thing you ever did (or in this case, you didn’t) see. I hated it, but wore it anyway.

That evening at prom a “friend” told me another girl wore the same dress last year and that my boyfriend was planning on breaking up with me. I should have never went out with this guy in the first place. He was a complete jerk. During study hall, he would sit at a table in the library with his friends instead of me. I guess that wasn’t a big deal. But sometimes he sat at the table with a girl “friend” he flirted with constantly. She was way out of his league and had an obsession with polka dots. After that I hated everything polka dots when I should’ve hated him.

But anyway, sometimes when your dad doesn’t care about you or who you are dating you pick guys that are emotionally distant like your dad. The night of prom started out rough. Now I can’t totally blame it on the dress. Or maybe some would. My boyfriend’s step-dad really liked my dress and grabbed my ass when no one was looking. The whole night was a nightmare.

Then after prom, my boyfriend and I were headed to a party but got into a huge fight instead over the rumor he was going to break up with me. It was raining and we were pulled over at the side of the road arguing. Several people stopped to see if we were okay. It happened so many times that my boyfriend just told the concerned citizens we were fighting.

Why don’t normal things ever happen to me??

But anyway, the dress. I felt like I didn’t have a choice. I didn’t pick the dress out. I didn’t even like it. I felt guilty for wanting something else, so I just wore it. My mom did spend a lot of money on it.

I felt that way a lot as a teen, though. I didn’t have any choice, although it seemed like I did. When my autistic brother Matt was home bound, my mom pulled my younger brothers out of school as well. I was entering 8th grade when this happened. She told me I had a choice between homeschooling and going to school. What I heard was…are you going to choose your family or your friends? I didn’t feel like I had a choice. I had to pick family.

Instead of spending my last year of middle school with my friends, I stayed home in isolation. Then I spent my first two years of high school at home as well. The chasm widened between my friends and I, my peers and I. For three years I rarely left the house. I became a recluse. My mom became my best friend. My mom was jealous if I had other friends beside her. It’s still the same today.

When I turned 18, you might think I would’ve left home as fast as I could. But I didn’t even consider it as an option. How could I leave behind my best friend when she needed me? But I don’t have any regrets. Do you know why?? Because I never lived. I was never allowed to be a child, a teenager. I had to be an adult when I was a child. I had to emotionally support my mother. I had to take care of my violent autistic brother.

Mom didn’t want me to play the piccolo, so I played a flute instead. I wanted to take singing lessons, but got piano lessons instead. When mom didn’t like my boyfriend, she set me up on a surprise date with an ex-boyfriend she did like.

When I wasn’t perfect, I was punished. I couldn’t be perfect, but I could be manipulated and controlled. I could be guilted into doing things I didn’t want to do. I hated not having any control over my life. My mom even read my diary. She was mad at me for the things I wrote in it. I never felt accepted for who I really am and for the decisions I made.

Part of it was my fault. I thought it was selfish to live my own life. I never stood up for myself. I never said I didn’t like the dress. I never said I wanted to go to school. I just wanted to be independent and live my own life.

I wanted to play piccolo. I wanted to be a singer. I wanted to choose my own clothes. I wanted to choose my own boyfriends.

I have a hard time as an adult making decisions and having choices. I sometimes still feel selfish doing what I want to do. But if I learned anything from this experience, it is to let my adult children live. Let them have their regrets. Their lives are not mine to control. But I will give unsolicited motherly advice.

On being a mother, their mother

I had a pretty low key Mother’s Day. That’s the way I wanted it. The last thing I wanted was to take my teens somewhere they didn’t want to be surrounded by hordes of whining little kids. Been there, done that…

Instead, Paul grilled ribs and we played yard games.

My mom stopped by with Matt for awhile. He is slowly starting to get better. Now the doctors think he may have had a virus. No one really knows for sure..but he is starting to get better which is all that matters. I was worried there for awhile.

My daughter came home from college for the summer. It seems like yesterday that I told you I was dropping her off. I can’t believe the year went by so fast.

My baby turned 14 a few days ago. We had her last middle school choir concert. Soon she will be starting high school. The first of the lasts for her, the last of the firsts for us.

Time seems to be whirling by fast for the young folks, but here I am still the same.

At church on Sunday, we decided to sponsor a boy from Africa. He looked so skinny and sad that we turned in the money pretty quickly. The paperwork said that he is an average student. My son is pretty happy that I will now be nagging someone else about grades.

My son wants to get a motorcycle. He will be 17 next month. You better get your grades up son! If I let him get his temps now, maybe he will develop good habits. If I make him wait until 18, he might just say that he is an adult and can do what he wants…blah, blah, blah..

Even though my kids are all teens now, they still keep me on my feet.

But I am happy to be a mother, their mother.

 

 

A special (needs) Mother’s Day

Last weekend I told you that my mom left early before she could celebrate my son’s accomplishments at state by going out to eat with us.

What I didn’t tell you was by the time she got home my brother Matt was sick. He was sick enough to lose 9 lbs in less than a week. He couldn’t keep down any food. He was also having involuntary movement of his jaw. He was anxious and restless without much sleep.

My mom scheduled a doctor appointment for Matt after he was sick for several days without improving. The doctor thought that he was going through withdrawal.

Last month Matt’s liver was showing signs of stress so it was decided that he would go off of his anti-psychotic meds that he was on for almost 20 years.

Apparently his psychiatrist took him off his medication too fast. Then he retired and moved to Florida without a replacement.

I feel really sad about everything that happened over this past week, not just for my brother but for my mother too.

I really want to spend Mother’s Day with my mom tomorrow but it seems like she is too busy mothering.

Is it selfish of me to want my mother to myself? To want her to fully participate in my kids events?? Should I want that when my brother needs her so much more??

When I was on speaker phone with my mom a few days ago, I could hear Matt throwing up in the background. I could hear the pain in my mom’s voice.

To be honest, I just want to run away from the whole situation..

I want to be able to spend the day with my mom tomorrow, but at this point I am not sure what is going to happen..

Sometimes I even feel guilty for wanting my mom’s time.

Mother’s Day is the least of her concerns right now, but that doesn’t mean that I don’t want it to be special for her…and not in the special needs kind of way..

What I truly want for Mother’s Day

What I truly want for Mother’s Day…

Baby, I want to hold your tiny hand in mine one more time.

I want to gather you back into the safety of my nest.

I want to be able to kiss your owwies and take away your pain.

I want you to still think that I have all of the answers and that the world is a good and magical place.

I want to sit you on my lap and read your favorite stories…I can’t seem to remember the day it all ended.

I want to laugh off the people that say it goes by so fast as I hold a crying baby in my arms.

What I truly want for Mother’s Day…

Mother, I want to see the excitement in your eyes as I give you my scribbles on a piece of pink construction paper.

I want to see the beauty of your young face and the natural color of your hair. I don’t want to see signs of you slipping away from me.

I don’t want to think that this could be our last year together like last year was for my husband’s mother.

I want to think that the little things I do or say give you lasting happiness more than flowers or a card someone else wrote on this one day of the year.

What I truly want for Mother’s Day…

Grandma, how I long to hear your voice again…to hear you sing like a bird…to tell you that you gave my daughter your gift. I want you to fully understand the influence you have had on my life and how that impacted my children.

I want to smell fresh cookies as I walk into your house and know that you made a special batch just for me.

I want you to answer the phone when I call.

I long to see your house again, the way it was before the new people moved in.

I want to smell your sweet perfume, even the scent that remains in the half empty bottle is beginning to fade.

I wish you could walk alongside of me on this journey again..

This is what I truly want for Mother’s Day.

The little waves that rock my boat

I don’t feel much like writing today. I have been feeling somewhat down and unsettled lately. I’m not even sure why.

Why does it seem that when I lack motivation the normal everyday things seem twice as hard to do and half as enjoyable?

The weekend started out good. Friday night I fell asleep watching a movie. Apparently my body’s idea of relaxing is falling asleep. I also argued with my son that he needed to spend the night at home instead of at his friend’s since he was performing at state the next day.

Saturday my son performed wonderfully by playing a very difficult band solo at state and receiving a perfect score. After playing, the judge asked him if he thought about music as a future career.

It wouldn’t be our first child to receive a perfect score at state and decide to go into music. Oh, just what I need two unemployment musicians living in our basement. I did my part of trying to talk them out of it..LOL. It’s exciting to see them perform, to see where it might take them..

Then there is child number 3. She dropped out of band this year. She is starting to feel pressure from everyone to live up to her siblings’ success in music. She laments over being average.

Friday night I called my mom to see if she was going to watch Alex at state. Of course, the day before is too early to tell which way the wind is blowing and make a decision about whether or not to go. When I called my mom she was in crisis mode. Someone new is working at the group home and neglected to fill my brother’s prescription before he went home for the weekend. My mom went to pick Matt up and was notified of this 5 minutes before the pharmacy closed.

My mom did end up going along to state. She was my back up recorder of the performance. Good thing since my phone crapped out and decided not to record anymore after about a minute. I wanted to take my son’s instrument and smash my phone but that would be rather distracting.

After Alex performed at state, we decided to take him out to eat at the restaurant of his choice. We had a group going including Alex, our youngest Arabella, my husband Paul, his step-dad Darryl, my mom, and the accompanist. For our large group, we had to wait awhile for our table. My mom left right away stating she had to give Matt his medication and feed him. We all wanted her to stay. But no one else could take care of Matt like she can, not even my dad who stayed home with Matt, so she left.

I felt a little sad that she left. I watched Darryl and the accompanist laugh and have fun and thought that it should be my mom too. She shouldn’t be tied down for life.

Maybe that is the point that everything ended for me.

I felt hurt that my mom left. I took everything personally that people said to me.

My husband and son teased me about hanging towels on the clothes line. They don’t like their towels stiff, but I do. I was probably overreacting, but their comments upset me. It made me feel unappreciated. I felt like they wanted me to change the way I do things which I refuse to do. I find myself to be just as stubborn, stiff, and unbending as the towels.

Things spiraled down from there.

It is hard to live in a house where everyone knows my weaknesses. I am a bit of a control freak. I already told you that I have this ‘rule’ to turn the lights off in every room after I leave it. Sometimes people will do things to bother me like leave the lights on in an empty room or turn the lights on after I turn them off.

Why should I be allowed to control the lights in a house other people live in?

How can I remain calm in life’s big storms and still let little waves rock my boat?

It’s ridiculous I know…The meaningless things that I do to feel like I have an iota of control over my life. My crazy rules helped me through times of chaos and discord. I can’t seem to let go now even though I don’t need them anymore. Taking the little bit of control I have away from me or complaining about the stubborn way I do things really bothers me.

Who wouldn’t like a lady with a laundry fetish?

What they don’t realize is when they take my security blanket of control away from me I feel like I am once again that frightened little girl. No one seems to understand. I barely understand it myself.

Will I let my relationships get wrecked over lights and laundry?? Probably not, I can’t even fathom why it would bother me so much.

 

Autism’s sibling, journal 3 part 2

One time when mom’s old friend stopped by, Matt threw rocks at her car and she left..

What I don’t understand is why the nice friendly Christian ladies at church didn’t offer to give us an hour break from Matt. We never got a break. I only had two friends that lived with me, my two cats. But Matt was mean to them and they eventually ran away. Life with him has been hell. Even though Matt is small, he is very strong.

I also have a lot of nausea. Once my depression and nausea got so bad I couldn’t eat. Nobody cared about me. Nobody cared about Mark either. They cared about Luke because he was a troublemaker and got a lot of attention. Sometimes he would even be as bad as Matt.

What I hated most was talking to relatives. They always asked how Matt was. That really hurt because it is like I don’t exist. Usually people ask how you are. But imagine if they asked about your brother and not you. It hurts to know that people really don’t care if I’m alive.

I remember when the three boys were wild at the table. Mom had to feed them. Mom and dad would fight. Mom would get upset and go upstairs to cry. I was her best friend. I would talk to her and tell her that things would be better tomorrow, but it never did. There were always more problems or more doctor bills. Things are better now, but I still feel the pain and it’s holding me back from being happy.

I had a friend that stayed over once in awhile until Matt kicked her. She never wrote back to me after that.

Alissa, 1990

Isolation…being completely alone…emptiness…a cold barren winter devoid of color….loneliness…the crying of the wind…sadness…the darkest days of the year.

Isolation…for three years Matt had a school teacher come out to the house to educate him. He was deemed too violent to attend school. My mom took a leave of absence from work and pulled my younger brothers and I out of school as well. Sometimes we only left the house once a week to go to church. I spent a lot of time alone in my room writing in my journals.

Emptiness…Robbed of joy and childhood magic…My dad couldn’t handle the stress…he was there physically, but he was gone emotionally…I had to step up to the plate…the firstborn…the caregiver…the fixer…weighed down with adult worries…numb to pain, numb to joy…Pushing all feelings away…left empty inside…Not able to feel anything.

Loneliness…Friendships were severed. When friends came over, it was a disaster. We only had people over once or twice a year and it usually did not go well. My mom and my cats were my best friends. I had more pen pals than actual friends, it was safer…the friends we had went away and never came back…

Sadness…My mother, the kindest and most compassionate person that you would ever meet. I think that it truly hurt others when they had to kick us out of public places because of Matt’s violence…he hurt someone…I have to kick you out…you are welcome back again, but give it some time…Those were the years when I saw my mother’s tears more than I heard her laughter.

Isolation…being completely alone…emptiness…a cold barren winter devoid of color….loneliness…the crying of the wind…sadness…the darkest days of the year.

I spent three teenage years completely alone..Those were the darkest years of my life. Years that I don’t talk about.

 

Our cancer journey (what to expect)

I found myself crying, anxiously waiting by the phone, and having far more questions than answers after getting the initial phone call that a loved one may have cancer. I received that call from my own mother, but she had surgery and survived. We received the call from my mother-in-law twice, the first round she won the fight against breast cancer. The second battle she courageously fought and lost.

I found myself trying to find answers regarding cancer online. I found a few totally factual sites. This is what happens in stage I, etc.. I learned everything I needed to know, but really didn’t know what to expect.

My mother-in-law Martha passed away last week from lung cancer.

For the first year and a half before diagnosis, Martha was ill. She had this cough that wouldn’t go away. At first the doctor thought it was a side effect from her medication. Then she was put on round after round of antibiotics for sinus infections or bronchitis. Eventually, she coughed more, seemed short of breath, and was wheezing. We told her to see her doctor who gave her another round of antibiotics. The day after the doctor visit her doctor called her up and said he couldn’t sleep all night because something seemed off. He wanted her to go in for more testing.

The tests revealed two masses, one in her stomach and one in her lungs. They did a biopsy of the mass in her stomach as it was a lot easier than doing a lung biopsy. They found an easily treatable form of cancer and started treatment assuming that the lung mass was also the same.

There was some relief that she was going to be okay.

But after treating the stomach mass which shrunk, they realized that the lung mass grew. After doing more testing and a lung biopsy, they discovered that she had stage 4 lung cancer. She had two different types of cancer at the same time.

We went from easily treatable right to no cure within a couple of months.

This is the time we wanted to make memories with her while she was up to traveling and doing things. We talked about flying to Vegas or a road trip to Chicago to see relatives. Martha didn’t want to do it though.

This is also the time to encourage your loved one to plan out their will or grant the power of attorney to someone trusted. But at that stage, it is hard to look death in the eye.

Then the Chemo started. Martha had to go in every 3 weeks. The first week after Chemo, she was the sickest. She couldn’t eat and threw up a lot. She was too sick to go anywhere. She needed someone to drive her to appointments and take care of her.

She also had to quit her job and had more medical bills which put upon them a huge unexpected financial burden.

After the first couple rounds of Chemo, they did more testing and found that the cancer moved to her brain which they treated with radiation. Martha had beautiful dark brown curly hair that was down to her waist. Her hair started falling out in clumps.

We started doing last things with her. We celebrated her last birthday, her last Mother’s Day..

Every time that we visited she got weaker and weaker. She lost more weight. Sometimes she was afraid that being around us would make her sicker. Sometimes she didn’t want us to leave.

Then there were days when she would eat and you could almost trick your mind into believing she was getting better.

What I remember the most now was the end days. The cancer starved her body. She lost about 100 lbs. It is hard to see someone down to skin and bones. After she could no longer have any more treatments, her hair grew back in wiry mismatched patches.

She collapsed on her way to the doctor appointment. The rescue squad took her to the hospital ICU. We had to wear gloves and gowns to visit. All of her dignity was stripped away.

She started getting blood transfusions. Afterwards, she almost seemed like herself. She looked better.

Then she moved from the hospital to a nursing home.

She could no longer walk. Sometimes when we would take her out of her room in her wheelchair, she would throw up.

At times she seemed agitated or anxious. Other times she was confused and would call us by the wrong names. At the end, she was not able to stay awake for our whole visit.

The visits were difficult. They typically ended with feelings of anger, sadness, or guilt.

She started gasping more for breath despite the oxygen. She stopped drinking, but had an IV in to hydrate her. The CNA’s had to come into the room every 2 hours to re position her because she could no longer move. She started sleeping more and more of our visits. She slept more than she was alert.

The last few days, her words were slurred and they didn’t make a lot of sense. She seemed restless and agitated. Her body started to get bruised and swollen.

The last visit, she didn’t wake up at all. She didn’t open her eyes. She tried to turn her head and open her mouth when we spoke to her, but didn’t seem able to.

The next day, she was gone.

We thought that there would be relief when her suffering came to an end. But it was really hard to get the last couple weeks out of our minds. My husband said he felt like he had post traumatic stress from watching his mother suffer. We saw her age 30 years in 3 weeks. She dropped a lot of weight in the last couple weeks too.

There was no hope that she was going to get better and that was hard.

It seems with each day that passes, we are able to let go a little more of the bad days and hold on to the good times.

 

Time, slipping away

Despite our best efforts, we didn’t make it on time.

Yesterday morning Darryl and Paul went to the nursing home to be with Martha. They each held her hand and spoke of what to do next. The nurse came in and said that she had 3 days left if they left her IV in and about 24 hours if they took it out.

They called Martha’s remaining siblings and family in for a final visit last night and decided to keep the IV in until the family came for one last visit. Then Paul and Darryl left to tie up some things at work intending to return later.

The kids were on their way home early from school and we were going to leave once they got home.

Paul received the call while we were still at work that his mother had passed moments before we were ready to leave.

We thought we would have more time.

When we got to the nursing home we went into her room and said our final good byes. It seemed so surreal. I tricked my mind into thinking she was still with us. Martha looked like she was asleep.

We had a little good bye service in the nursing home chapel.

While this was all happening, my son became seriously ill (I think he will be okay now). It was horrible timing. I was debating whether or not to take him to the ER.

I felt terrible ignoring the family to deal with another crisis.

It was one of the worst days of my life.

We almost got into two car accidents. Someone came close to sideswiping me and someone pulled out right in front of us. Then on the way home I called the doctor’s office, almost hit a fox all while driving on empty.

I felt like I was on empty too.

It was late when we finally got home.

I made a doctor’s appointment for my son first thing this morning.

I feel so sad.

My family is having a hard time dealing with this. My husband feels so lost without his mother. He said he misses her so terribly much already.

This weekend we will be picking our daughter up from college for the funeral. She is on tour right now with the music department. She was going to surprise her grandma by having the choir sing her a song, but there wasn’t enough time.

I had to stop myself from crying at the doctor’s office this morning.

I feel so confused. I’m forgetting the details which rarely happens to me. I feel like I am running on auto pilot without thinking.

I missed planning the funeral arrangements because I was at the doctor’s office.

Then I needed to stop for groceries. We have nothing to eat in the house. We have been making the hour and a half round trip to see Martha almost every day this week. There hasn’t been time to take care of all the little things.

At the store, I saw a daughter helping her elderly father shop. I almost started crying again.

This has been so emotionally and physically exhausting. We haven’t been sleeping well.

At least Paul had the chance to say good bye. Last week, he had the opportunity to visit his mother alone. He told her he loved her, that she was a good mother, and that he appreciated the sacrifices she made for him.

He said it was one of the hardest things that he has ever done, but it was a very special moment.

He wanted to put it off, thinking that he had more time.

But time has a way of slipping away faster than we can keep our hands on it.

 

 

 

Family time

We haven’t been stopping to see the birds anymore..

Since we last talked, we have been to the nursing home twice.

The first visit was the hardest. Martha drifted in and out of sleep. When we talked to her, she responded with answers that didn’t make much sense. She seemed restless.

The absolute hardest part that night was leaving. When we told Martha we were leaving her eyes snapped open and she gave us the saddest most terrorized look that will forever haunt me.

I have been trying to get Martha’s last look out of my head but I can’t seem to do that. It was like she was pleading with us to stay. When I start to forget, something reminds me. Yesterday I was on the way to the gym and I saw a van with her nursing home’s name plastered on the side.

If I couldn’t fix things with my mind, I wanted to fix things with my might. After the nursing home reminder, I felt so angry. As I was working out, I imagined that I was taking cancer into a dark alley and kicking the living shit out of it.

So far I have found that fighting and fixing hasn’t helped anyone cope but myself. It just gives me a false sense of control over a situation I have no control over.

Last night’s visit was much more peaceful. Martha did not wake up at all. She seemed totally oblivious of our presence. We still spoke to her and played songs of Angel singing. I feel bad because Angel is really busy at college right now. She will not be able to make the 5 hour drive to come out to say good bye. She doesn’t even have a car there. But we were able to face time her while her grandma was still up and talking.

We are hanging in there, but it hasn’t been easy..

Since this original draft, we received word that it is time to call in the family. Tonight after the final good byes, they are going to remove her IV. It won’t be much longer after that.