Our last supper

Paul and I decided to take his mother Martha out to eat for one last Mother’s Day celebration where we can all be together.

A quick recap…Martha has stage 4 lung cancer that has already spread to her brain. This will most likely be her last Mother’s Day. Plus we were able to go out with all of our kids. This will also be the last time the kids are all living at home since Angel will be in college next year several hours away. So this was the big hurrah!

We took the family out to a Japanese steak house for hibachi. Martha doesn’t get to enjoy fine dining often and was very happy for the opportunity to go out. She was very sick earlier in the day from her chemo, so we weren’t even sure the evening out would happen. We thought about just cooking a nice meal at our house. But since this is the last time, we decided to go to a small quiet restaurant and make it memorable.

We had a wonderful hibachi chef. Arabella even tried some raw tuna sushi to get ready for her trip to Japan this fall. She is very brave. Martha was wearing a baseball cap to cover her bald head. Paul made sure that she received a special chef hat that they reserve for birthday parties. I took a lot of pictures.

When we received the bill, we were told that Martha’s supper was paid for. Someone at the table next to ours covered her bill.

Paul went over to the table and thanked the man. They embraced. Later the man followed Paul into the parking lot. He told Paul that his mother passed away a few months ago from cancer. He wanted Paul to pass on this generosity someday to another person going through the same thing.

Once again, the two grown men embraced. Total strangers sharing a moment of sorrow over their dead and dying mothers on Mother’s Day weekend.

Together they wept in each others arms.

I have never seen two big masculine men sobbing together in a parking lot before. Complete strangers for a brief moment sharing the same pain.

It was very moving.

 

Is my run over?

I feel like I am letting go of my dreams.

For a long time I held a handful of colorful helium balloons. Today I let them fly off into the air. Maybe I still grasp a few in my hands. But they are shriveled up like oxygen got in them….breathe…I can’t let go of all of my hope.

Saturday I had a wonderful run. I ran 18 miles without stopping except for a short bathroom, gu, and water break. I was fast. I had the stamina I spent months training for. Life was good. At the end I felt a twinge of knee pain, but it went away after a day.

Yesterday was my first run of this week. I ran 12 miles. The first 6 miles went pretty good with my knee brace on. I had to walk 3 out of the last 6 miles. Afterwards, my knee felt fine.

Today, I decided to go for a 6 mile run but only made 5. The first mile or two I felt a twinge of pain in my knee with my brace on. Then it started getting worse to the point that I needed to walk. I was afraid that by pushing on I would get hurt. At this point, I was halfway home regardless of whether I decided to keep walking or turn around. I tried calling my husband to come pick me up but he didn’t answer.

I was feeling so angry that I wanted to take my arms like a baseball bat and knock over mailboxes. I also wanted to kick over the garbage containers that littered the side of the road. But I convinced myself that further injury probably wouldn’t help my cause. It probably would piss off the neighbors, provide them with entertainment, or I would end up crossing off going to jail off my bucket list.

The marathon is 3 weeks away. I am going to try to take it easy for the next week or two and see what happens when I try running again. Right now I am not even fit to run a 5k.

I am so disappointed. There is no way that I am going to be able to run a marathon if I can’t even run a few miles without pain.

The real kicker is that my knee feels fine right now.

Feeling my age

Today it started. I am starting to feel old.

I had my yearly physical today. This year I didn’t even need blood work, pap, or mammogram. Easy breezy, right??  I have always had low blood pressure and cholesterol. I have the cholesterol levels of a runner. So does my dad, but he never ran. So I don’t think my heart will be failing me anytime soon. My blood work was so good last year that they didn’t even bother checking it this year. 

The doctor asked if my parents were still living. That was one of the scariest questions she asked.

One little thing that I didn’t tell you about my 18 mile run on Saturday was that my knee started hurting again. My endurance was great. I didn’t have to stop and walk. But with endurance and speed comes knee pain for me. It was the same pain that I felt during my first marathon, just not as bad. Besides wearing my knee brace, there is not a lot that I can do. I am worried about the marathon next month. I can clearly see the writing on the wall. The doctor asked me how badly I wanted knee replacement surgery. I told myself and her that if I have knee pain with this marathon, this will be my last. 

I feel like my body is failing me. 

Then I was hoping to decrease my acid reflux meds and instead my dose was doubled. Apparently after treatment I was not supposed to have any acid reflux break through at all. Supposedly, I should not have to take massive doses of Tums and liquid antacid on top of Prilosec. So she doubled my dose and said that if I am still having symptoms in 6 weeks that I will have to be scoped. 

I don’t want to take medicine. I don’t want to get old. I want to have some control over my body. I don’t want my body to control me.

Monday’s dirty laundry

I started the week off by having to buy a new washing machine. The last couple of weeks it sounded like a gun range in my house every time I threw in a load of laundry. Bang, bang, pop, pop, pop. Then this morning it almost started on fire. Good thing I didn’t throw in a load and leave for work. Stinky smoke billowed out of our utility room. I sure hope this is not an indicator of how the rest of the week will go. Lol. 

Yesterday my mom came over for supper. We spoke about my mother’s childhood years. She said that as the second oldest girl, without older brothers, it was her job to assist her dad in his work. His job was very labor intensive. She spent the summers picking cucumbers to sell to help support her family. She had to help her mother wash clothes, including cloth diapers every day, in a basin with bleach. They did not have a washer or dryer. It sure makes me appreciate my broken washer, or should I say being able to afford to buy a nice new front loader. 

I wish that my mom would write down her stories so I could understand her life more. Just like I hope someday my kids will read my writing and understand me more.
Then we talked about Matt and parenting an autistic child in the late 70’s. She said that she was thinking about writing down everything that happened to help herself heal. At times like this, I am so tempted to tell her about my blog but didn’t. She said that she is helping herself heal by helping others that are struggling. She has more compassion than anyone. She said that she wouldn’t have been able to make it through without her faith in God.

We spoke about the abuse that Matt suffered at the hands of the school. She said that she only saw Matt cry twice in his life. He cried when he spoke of what happened at school. It was absolutely barbaric. The teacher had him sit underneath her desk while she sat at her desk. If Matt touched her, she would kick him. One teacher held him face down on the floor while the other sat on his back. He couldn’t breathe. That is the story he cried about. There was a disabled child that died that year from a teacher that used the same discipline method.

We spoke about my mom’s church friends. I was not aware of this, she said one time when Matt swore in church her friend hit him. Another friend told my mom that they needed to beat it out of him. Oh, my dad did try to beat it out of him. It didn’t work. My mom spoke of when my dad kept hitting Matt over and over trying to beat it out of him. I told her that I remember that day clearly because it was my first childhood memory. I remember the screaming of my dad and Matt. I remember the plunking noise of Matt being knocked back and forth against the cupboards in the kitchen.

My mom said that Matt crawled around on the floor like an animal. He spent a lot of time screaming after he quit talking. 

Later on he became fixated on hurting little girls and I just happened to be the only little girl around. My mom said that she felt terrible that I had to suffer. She spoke of the birth of her first grandchild, my daughter Angel. She said that she was excited and filled with joy the day Angel was born. But her second feeling was horror because she knew what that might mean.

Matt did hurt Angel. What I didn’t tell you was that the two years leading up to the attack, Matt became obsessed with the thought of hurting Angel. He ruminated about it. He asked questions about what it would be like if he pulled her hair, twisted her arm, hit her, or held her head underwater when we were together. My mom and I were worried. I had to take a step back from Matt.

When Matt hurt Angel on her 4th birthday, my mom went in the other room and cried. She was so upset that she didn’t talk and was inconsolable. Luke took Matt home and the whole time it was like he was possessed. He laughed. The voices in his head were whispering over and over out loud. I almost forgot about his maniacal laughter after hurting someone. I could only describe it as evil or demonic.

My mom was at her breaking point. We had to part ways. She quit going to church for the next 3 years. She was angry at God for allowing this to happen. 

We have forgiven Matt for all of the things that happened. But it has been a long road and painful process.

Tomorrow I am going to start another autism series. I have a copy of Matt’s clinical diagnosis report from the early 80’s. I have been holding on to it for the last 20 years. I am going to share it with you along with my feelings about what was written.

The role of the dice

Tonight I will be out playing Bunco with the girls. It will be the first time that I went after my neighbor Sharon passed away. I will be playing with her friends. I really haven’t wanted to play the last several months without her, but haven’t been able to anyway.

If you are not familiar with Bunco, it is a dice game that is totally based on luck. The only challenging thing about it is keeping score after a drink or two. I was first invited to Bunco when Sharon was hosting it at her house and needed an extra player. That first night I won big time. Beginner’s luck they said. Month after month, Sharon called me to tell me that they needed a sub. Eventually, I was put on the permanent player list. Sharon always insisted on being the driver. She liked to smoke a cigarette on the way to calm her nerves. She rarely, if ever, had a drink. She liked to pick everyone else up. One time we ended up having more people than room in her car, but she squeezed everyone in.

I have finally reached the point of accepting that she is gone. I don’t think that she is going to drive by and wave. I don’t think she is going to come out of her house after a long winter and visit. I don’t think she is going to come over to borrow an egg and send back a batch of cookies. She is gone.

Sharon was an extreme extrovert. She loved people. She used to work at a local gas station and grew up in the area, so everyone knew her. After giving people directions to my house, several people asked me why I didn’t tell them that I lived next to Sharon. So I started telling people that I lived next to Sharon. She had 1,000 people come to her funeral. 

Sharon loved to entertain people by telling stories. My favorite story was about a bear that visited her up north. Sharon and her family owned a lot up north that they put a couple of campers on. She told me that one day a bear visited them while they were cooking out. Later that night, Sharon was having an intimate evening with her husband. The next morning her little boy asked her if the bear came back. He said that he heard her screaming like she was scared and the camper was rocking like the bear was trying to get in. I never laughed so hard.

Sharon had the world’s biggest heart. Her husband had children from a previous marriage. Although she treated his children as if they were her own, she was never able to have children. They decided to provide foster care with the intentions of adopting. Their first two foster children were abused by their previous adoptive foster parents. They were in the process of adopting these children, but it fell through and they were returned back to their previous adoptive parents. Sharon was absolutely heartbroken. 

A couple of years later, Sharon became the foster parent of a baby that she later adopted. She eventually adopted his younger sister when she was 2. The second child was more of a challenge because she was in foster care for the first two years of her life. She decided to make it an open adoption. The birth mother was on drugs and had all of her children taken away right after birth. She just wasn’t mother material. But Sharon kept her land line so the birth mother could call her anytime day or night. She was very loving and not at all judgmental. She even loved my children like they were her own. 

Sharon always called me at work if a strange vehicle was in my yard. She was always keeping an eye on the neighborhood.

The last couple of times that I saw Sharon, she was in bad health. She had a couple of very serious health conditions. Her husband quit his job to become self-employed and they didn’t have health insurance. Previously, her husband was on the road a lot. Sharon was afraid to be home alone without her husband. At night, she slept with every light on in the house. Once in the middle of the night, there was a motorist that broke down near us. She went to Sharon’s house for help because all of the lights were on. Sharon was terrified when her doorbell rang in the middle of the night. So her husband decided to start his own business to be home more.

The last couple of months, Sharon complained about not feeling well. She said that after the kids left for school, she would go back to bed until the afternoon. She couldn’t afford to get the treatment she needed but always told me that she would go to the doctor soon. Then she came down with a simple case of pneumonia. She very unexpectedly died at the age of 45 leaving behind two grade school aged children.

So tonight I will be hanging out with her friends. I wish I didn’t have to go without her.

Until we meet again

Grandma, I know you said it was your time to leave. I want you to come back. I long to hear your voice. We should be sitting in a small town restaurant celebrating your birthday today.

Remember the time that Matt poked me in the eye? I cried and cried. You rocked me in your arms and sang to me. I wanted to hurt Matt back. You held Matt tight in your embrace. You comforted him. You taught me to love when I wanted to hate.

Remember the night that baby Luke was born? I was 4. You put the straight section of the circular green Davenport, as you called it, against the wall for me to sleep on. I told you that I was going to sleep with gum in my mouth. You told me it was a bad idea, but you didn’t stop me. I woke up with sticky gum all over my face and in my hair. You were right. Then you slept on the other part of the couch. The street light shining in on us through the window. Grandpa loudly snoring upstairs. 

Remember the doll house you made for me? You painted the walls, made curtains out of old lace that you thumb tacked to the walls, and used buttons as light fixtures. You squeezed your big fingers in the little material to make my doll clothes. Remember my doll stroller? Remember the doll that had buttons, zippers, and ties that would help me learn how to dress myself? Or giving me your hand towels for blankets when my dolls got cold? 

Remember cooking for me? You would send me off with a jar of cookies. You would prepare a feast when I visited. Remember me asking if my stomach would explode after eating too much of my favorite soup? Then when my kids were little, you gave them a tea party with juice in little tea cups. You had little plates of cheese and grapes for them. They were so excited.

Where would I be without you? You brought peace, comfort, and stability into my chaotic life. 

I will think of you today and remember all that you have done for me. I will celebrate your life! The candles are lit without a cake. I look at your picture as I smell the sweet fragrance of your favorite perfume. It is my ritual every year. For a brief second, I pretend that you are still here. I will never forget you.  

Happy birthday, Grandma! Until we meet again…

A sibling’s viewpoint on autism awareness  

April is autism awareness month as quite a few of you are aware of. I have been seeing a lot of arguments lately about autism awareness vs. trying to find a cure. I’ll be honest, it is pissing me off. The comments seem to be all about accepting people the way they are (which is great) vs. changing the way people are. As if by trying to find a cure, we are somehow not accepting people the way they are. That is ridiculous!

I have an analogy for you. Let’s play a little pretend. For a second, let’s pretend that autism is depression. Perhaps you have a sibling with a mild case of depression. His depression made him a great artist. Some days he can paint and create wonderful masterpieces. The next day, he can’t get out of bed. When you take him out to restaurants he cries and that embarrasses you. You don’t want to take the depression away because then he might not be a great artist. But you want everyone to know he is depressed because sometimes he acts in ways that are not socially acceptable.

Now I am going to paint another scenario. Perhaps you have a sibling that is depressed. But your sibling has one suicide attempt after another after another. It tears your whole family apart. 

If you lived out the first scenario, good for you. I’m glad that you were able to go to restaurants and do things that other normal families get to do. I can understand why you might be holding the awareness and acceptance card. But we lived out scenario number two. 

When my mother got her first black eye and bloody lip, it was autism.

When my brother banged his head against the wall over and over, it was autism.

When my brother rocked himself to sleep until he got blood on his sheets, it was autism.

For the scars people could see, it was autism.

For the scars people couldn’t see, it was autism.

When I lost my best friend, it was autism.

When my brother was lead out of school in handcuffs, it was autism.

When family and friends turned away, it was autism.

When my brother was ridiculed and mocked, it was autism.

When he chased me with a knife, it was autism.

When my parents had to find a caregiver to attend my wedding, it was autism.

When my daughter was attacked, it was autism.

Of course, I want a fricken cure!

May God have mercy on all those that suffer from this. I am hoping that someday autism will be a preventable.

You have no idea how terrified I was to have children. Or how nervous I was when my brother Luke had children. Or how much I worry about the possible future family of my brother Mark and his new bride. I don’t know if any of us have the strength to live through that again.

My mom always said that my brother Matt did not do these terrible things, it was autism. 

Autism you suck! Why did you do this to my brother?

 

Training like a warrior (oops, I meant worrier)

The dishes are done. The laundry is folded and put away. I just put on my pajamas and am sitting on the recliner with my feet up. Lazy? No way, I took a half a day off of work to run 20 miles. I did it and it went better than I expected. The last couple of miles were dreadful, but I did it. I admit I was a little worried. This has been the most miles that I ran since the marathon last summer. My endurance hasn’t been what I wanted it to be lately. I almost feel out of shape. Treadmill running is tough, but I am satisfied with how I did today. I was wondering if I don’t have what it takes anymore. I am not getting any younger.

I thought that after I was done running that I would feel better, but I don’t. I feel edgy, worried. I feel like the pattern is off. Some detail is out of place, but I can’t figure out what is wrong. I feel like something bad is going to happen. Call me crazy, you wouldn’t be the first. Maybe it is the rain. It hasn’t stopped raining in days. 

Or maybe I feel a little self-conscious about opening up to you. Things are getting a little too personal and I want to step back. I want to pull away. You are starting to find out who I am. Maybe you won’t like the real me. Sure, I can tell you a lot of good things about me. I could tell you stories of how I like to save birds or give people their lost wallets back. But what about the bad? I feel vulnerable and afraid. I am not leaving, but sometimes I want to.

Or maybe I feel edgy because this morning I got a text from another mom warning me of a new potential threat. We just severed Alex’s ties to his druggie friend last week just to have another come walking through the door. If my son wants to do drugs, there is nothing that I can do to stop him. I wish I had full control. I like to play God instead of trusting Him. 

I need to relax…Grrrr.. Tomorrow I made lunch plans with my mom. Then we are going to get a massage. I thought that it would be great to get my long run in today so the massage tomorrow will feel even better. I am not in a lot of physical pain, just the normal aches and pains of a long run. No knee pain which is great. Then tomorrow night I will be watching Angel perform in her last high school play. I am so proud of her, I always have been. She got straight A’s this quarter. Paul and I always told the kids that if they got straight A’s we would take them out to a restaurant of their choice. It has been close, but this is the first time it happened. Finally some good news!!

P.S. I decided to make some split pea soup with the leftover Easter ham. I put yellow split peas, carrots, and potatoes in the slow cooker all day along with the rest of the ham on the bone. It was the first time I made it in the slow cooker. It was the best batch that I have ever made. It was more soupy than thick. Yum. I didn’t eat much all day with running so I had two bowls. I hope I don’t regret that tomorrow. 

Last(ing) things

Last night I woke up in the middle of the night crying from a nightmare. In my dream, Paul and I were in some sort of clinic. Someone we knew was close by and received good news. They were expecting a child after years of trying. But we received bad news. I dreamed that Paul had cancer too. We were going to watch his mother die, then he was going to die of the same thing. It was all very horrifying. I woke up upset and crying. I reached over and held onto Paul tightly.

Back in October, Paul’s mother Martha came out to Alex’s confirmation. She had been sick for over a year at that time. She had a cough that would not go away which her doctor said was caused by medicine that she was taking. She was always sick with sinus infections or bronchitis. When we saw her in October, she was wheezing, short of breath, and gasping for air. She looked horrible. We told her to go back to the doctor.

In November, the doctor found a tumor in her stomach and lung. They thought that the tumors were the same kind, that they  would be easily treated with a pill. She was going to be okay. Martha already survived breast cancer 15 years ago. 

Then in January, the doctor found out that the tumors were two different unrelated kinds. In February, Martha was diagnosed with stage 4 terminal lung cancer. The cancer filled one lung and was moving into the other. Then last week, she found out that the cancer had moved into her brain.

Martha is now taking a combination of chemo and radiation. Last week Martha lost her long shiny hair. I haven’t seen her yet without hair. That is going to hit us all hard. I am glad that Paul was given some forewarning to take the time to say good bye. I have to forgive her for all of the past hurts. 

Our relationship with Martha has always been volatile, especially in the earlier years. When Paul and I bought our first house, Martha wanted to help me make curtains. We went together and I spent more than I expected to on material. We started the project, but before we could finish Martha got into a big fight with her son and left me with unfinished curtains. My grandma helped me finish the project.

There were countless times that Paul and Martha would fight. Martha screamed at Paul and kicked him out of her house anytime that we had to discipline the kids. She would show up late for holidays. It has been years since we celebrated any holiday with Martha. Sometimes she would cancel out at last minute or not show up at all.

One time Martha and I were going to take the kids to a water park. She was running late to the point where we weren’t going to be able to make the trip worthwhile. This was the only time that I confronted her. She didn’t talk to me for a year.

Martha often called and spoke of gambling trips that she took with friends then complained that she didn’t have money for gas to come see the kids and their events. Our relationship was marked with a lot of anger, hurt, and resentment. She is a difficult person that likes to argue and say hurtful things, and now she is dying.

This week she called Paul and asked him what we were doing for Easter. We have plans with my family. Today is Matt’s 40th birthday. My whole family will be getting together to celebrate Matt’s birthday on Saturday and then Easter on Sunday. We are able to see each other as a group a couple of times a year. I told Paul that we could cancel the Easter plans with my family to see his mother. It most likely will be her last Easter. Paul decided to keep our plans as is. 

I forgive you, Martha! I will try to remember the good times. When you weren’t crabby, you were always so much fun. Your fun loving, upbeat, optimistic attitude is hard to beat. You provide a lot of excitement. There was never a dull moment with you. You are always happy with the littlest things. You are content with what you have. You try to make the most out of situations. You always had good intentions. 

By far the best gift that Martha gave me was her son. She made the right decision when she decided to keep her unwanted pregnancy. For that, I will be forever grateful.  

 

Letting go of a broken wing

Yesterday as I was heading back to work after my lunch break, I noticed a peculiar sight. There was a robin hanging from a tree branch in my front yard. At first, I thought she was dead. Then I saw a flap of a wing, a bit of a struggle.

I noticed a nest starting a few branches higher. But something went terribly wrong. There was a black line, like fishing line, wrapped around the tree and around the wing of the bird. Every time the bird tried to break free, she wrapped her wing around the small branch again and again.

I approached the bird in a panic wondering what to do. I was afraid of the bird. The bird was afraid of me too. I spoke quietly panicked F words to the bird. I went back inside the house and grabbed a scissors. I started to cut away the line entrapping the bird. As I cut closer, the bird shrieked loudly. Panic took over my body. The tunnel vision started, my stomach acid built, and I started shaking. I was terrified to cut closer to the bird’s body, but I couldn’t leave it there to die.

So I did the next best thing after wimping out. I found someone to help me free the bird. He cut the line that was wrapped tightly around the wing. The bird fell to the ground and quickly ran away too injured to fly.

Then I started ruminating about horrible things. I thought about the nature shows I’ve watched where sea animals are caught in fishing nets. Or of all the animals that I hit with my car. Maybe some were pets. The dog that looked like mine that I saw dead along the highway years back. The pets that I lost. The fish that swallowed the hooks.

By far the worst thing that happened was a few years ago. I almost hit a deer at dusk. I slammed on my brakes just missing the deer. He ran quickly past me to the woods that was surrounded by a fence. The deer hit the fence at full force and did a flip. It was kind of comical at the time so I laughed. It felt good to relieve my nerves from the stress of almost hitting the deer. The deer was stunned from hitting the fence, but seemed to be  fine. So I left.

A few weeks later I was driving down the same road when I looked over at the area where I almost hit the deer. I noticed a dead deer that was tangled up in the fence. I knew it had to be the deer that I almost hit, that he didn’t end up being alright after all. I felt so horrible. Maybe I should have stayed longer to make sure the deer was okay. I felt guilty for my laughter. Things didn’t turn out okay like I thought they did at the time. It had to be the same animal, right? I NEVER would have left that animal there if I knew it was hurt or in any pain. It really bothered me.

Today when I came home for lunch, I saw the injured bird. Paul armed himself with a fishing net and I carried the cat carrier. We trudged around the neighborhood in attempts to capture the injured bird. I want to tell you that we caught it and brought it to the wildlife refuge like I planned, but we couldn’t catch it. The bird escaped into a muddy field. Now it probably would’ve been amusing watching us chase a bird in knee deep mud, but we had to give up. We couldn’t even catch it while on solid ground.

I can sense the storm approaching. The temperature dropped and the winds are ferociously howling. The ominous threat of a blizzard lingers. By tomorrow we are supposed to have a foot of snow whipping around in 40 mph winds.

I can’t control everything. I can’t protect everyone. I did the best I could. I am just going to have to let this go…