Ordinary Days


I was reading an article about life the other day, and one of the things that struck me is that one person who was dying wanted a “normal day.” I agree. There were so many types of days while Paul was struggling with his disease. Days on a diet, days at the doctor, days where he went to work and days where he was asleep as quick as possible. There were other days where we went to Disney World, and visited my Grandparents in Traverse City, and went on drives in the car. When I think back to hanging with my brother, I don’t want more vacation days or graduation days or party days. I want just a normal day. There can be so many expectations with the special days, when it is just a run of the mill day you just are happy to be yourself.

My favorite day was when we had a food fight with my brother. For years my brother had talked about food fights. He had seen several food fights on television and he wanted to do it in real life. We decided to do it. We got the food and invited several people to come over and participate. We combined the food fight with a water fight. Several people showed up and they were really excited. We go outside, his friend grabbed the mash potato container and right before she threw it at him, he said, “I don’t want to play,” and went inside.

Paul was definitely his own person. I loved that. There is something about the reality of a dream that is disheartening.


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Cars and Freedom


Last week my car had a significant malfunction. I had to replace the transmission. Everything worked out, and while it was stressful, it wasn’t a serious life issue. Most of the week I had to beg for rides, and it made me think about how grateful I have been for multiple things. The ability to learn to drive and the availability of mostly reliable cars since I have been 18. I connect cars and driving to freedom. I think about losing the ability to drive and how I would start to feel trapped by my surroundings. I think about the times before I drove and I remember standing on the porch of my house and wanting to go somewhere….just go..but I wasn’t able to do so. I am comfortable in my mobility and my independence. Sometimes I felt guilty for this ability when I thought about you.

The first time that I was behind the wheel you were in the backseat of our brown Ford Windstar. My mother had decided that I needed to drive at least once before driver’s school and she took me to a local high school to practice. She parked the car and we switched places. The first movement of the van scared me. I took my foot off of the brake and the car was moving without me telling it to do so. I put my foot on the brake again to get my bearings. Now, I was not familiar with the power function of the car and we all thrashed about in the brown bomber as the car stopped–inches from the place it started out. I took a breath. From the backseat I hear Paul yell out, “WE ARE ALL GOING TO DIE!”

That Paul and his impeccable timing.

Besides the idea that I was a failure at driving and I was never going to get the hang of this massive machine moving down the road, Paul had brought up in a joke that I could kill the family. I know that it was a joke and I was probably not going to harm them. The possibility was there. I was an impressionable and emotional teenager. What am I saying? I’m still a bit emotional.

Then he said to Mom, “Tomorrow I am going to learn to drive.”

My heart broke. Paul was older than me and was never going to learn to drive. We knew this. He did not.

Then the guilt set in. I was going through the throes of this freedom. He was not going to do so. How is that fair? He was always going to need rides. He was always going to be dependent on other people. His world of freedom would have to be created in his immediate surroundings. I would not. I still don’t know how to reconcile that. I still feel guilty. It was somewhat assuaged with our weekend drives and our singing in the car together. Overall, I still feel bad.

We will keep talking Paul. I will forgive myself for my able-bodied-ness. You loved me anyway.


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Finding Joy Again


The funny thing about depression is that it is the silent struggle– kinda like driving in a slowly arriving fog. You don’t realize that you have it until you are in the middle and something sets off in your brain that you aren’t thinking like a rational person. I didn’t realize that I had depression for real until my psychiatrist told me that she would never advise that I stop taking my medication. I had started taking anti-depressants thinking that they were a short time deal while I was living in Maryland. I had the belief that they would be stopped once I took myself out of the situation. I re-oriented my life in Lexington and was waiting for the moment when I would be able to “control” my moods like I had before I left and over-worked myself into a depressive mood. Then I had a hard time working myself out of the mood. I was still functional, but I wasn’t joyful. I asked my Dr. and she said that she wouldn’t advise it for someone who had “3 major depressive episodes” in a row. I took it hard. Suddenly I wasn’t someone going through a hard time, I was one of those “depressed” people.

Since then I have worked on trying to manage my emotions. No lie, the year after you died, Pail, was a very hard time. I spent a lot of Saturdays crying in my bed. I didn’t socialize because I couldn’t think about other people. I planned a trip and cancelled it at the last minute. I may have seemed happy, but it felt a lot like an act. I had to work to be okay. I missed you. I wasn’t sure what my life plans were now that I was not tied to Lexington and your healthcare for my foreseeable future. I kept going. I think that is the best thing to do when I am in depression. Don’t just drop out of life, even though that is the only thing that I want to do. Go to work. Hang out with people. Create art. Eat dinner with family. The worst part is when I sit alone and don’t see people. My mind just keeps digging a hole and I constantly fall into it.

Then more time passed. The first time that I felt “happy” without trying to be so was when I performed in the Thriller parade around Halloween. I had gone to some practices and dressed up as a teacher zombie. Another teacher and I were decked out and spent time beforehand laying on Main Street and scaring children. I let myself get completely involved. I was dancing, acting and giggling the whole time. It was the perfect combination of timing, movement, fun and friendship. I remember having the thought, “Oh yeah, life can be good again.”

Paul, I’m not telling you this to make you feel bad for me. I’m not trying to get people to pity me or reach out to help me right now. I just want to show you that I can be okay. Life is hard and there is pain. But life does go on. That is a wonderfully difficult and true thing.

I love you. We ate hotdogs for you yesterday. I could hear you singing along with us in 5 Guys.


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Two Years- Time to Start Again

It is hard to believe that it has been two years.

I can still remember getting a call from my Dad that morning. We had been going back to the hospital every day, and I still had the belief that it was one of those “Paul always bounces back” moments. Until the day before I hadn’t categorized this experience in my head as anything different than all of the other times that he had been in the hospital for pneumonia or bronchitis, or liver issues, or water retention. When my Dad told me that we had some time to say goodbye, I turned off the feeling part of my brain and switched into my “get it done” mode. I got up and went to the hospital.

The first person I talked to was the nurse. She told me what was going on. I talked to Paul even though his essence had disappeared the day before. I don’t remember the exact words, but I told him two things: I loved him very much and I would take care of our parents from now on.

We said our goodbyes and they started shutting off the machines. I remember they prepared us for the breath that his body took after his heart stopped beating. They didn’t prepare me for the wail of anguish from my mother. They didn’t prepare me for the way that his body looked completely dead after 10 minutes. They didn’t prepare me for how someone’s body can look like it is still alive after the machines are off, but everything that makes up the person has been gone for awhile. They didn’t prepare me for how this would change almost everything about my life concerning my family.

I know with my head that change is the only constant. That fact doesn’t make it easier. I miss him every day. I used to get a bit annoyed that he wanted attention from my parents, and now I feel like I almost get too much attention. Growing up with him as my lighthouse helped to make me who I am today. I care deeply for people and am really good about helping people do things. I have patience for lots of things and work hard. Paul taught me that. Things can feel like they will last forever, and nothing ever does. How do I hold onto the good times in my heart?

I miss my brother. I miss when we would take a little drive in the countryside and sing along to songs like, “You don’t know you’re beautiful.” I don’t miss the things that he would do for me, but the way that we felt when we were together. You don’t come across people who just let you be very often. We were always okay with each other. He was the first person that I came out to in my family. He was the first person that I told about being called Mel. He just understood without words. For someone that likes to talk a lot, it was wonderful that he just let me exist without expectation of anything. That is the feeling that I dream about a lot.

Paul. This journal is now for you. I’m still talking to you.

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Paul is Home

Paul passed away on April 24, 2013. I was in the room when he passed. I think back on it and still feel like I’m watching some horrible movie that I cannot turn off. I see all the machines and I can tell he is not there even before we turn them off. I try to talk to him, tell him that if he needs to go I would be ok. I will take care of the parents for him. I love him. I will miss him. He turns a bit towards the sound of my voice. Then the song “Yesterday” by the Beatles comes on.

While I prepared for my parents to get older and pass on, I never really considered this option. While Paul had a disease and was struggling he was always a fighter and would get through it. Maybe this was his way of saying “Enough.” I fucking miss him every day, in every moment. I feel empty and wonder if I will ever get back to feeling half whole again.

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I always go back to…

I hate when people apologize

-pity in their tone-

when I say that my brother has down syndrome.

He wouldn’t be Paul without it, 

and I wouldn’t be Mary.



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Baseball with Paul

It is the second inning and he wants to leave.

The game hasn’t even started yet

and he wants to go home.

In silent defiance

he takes a bathroom break every 6 minutes.

“Paul, can’t we stay until at least the

5th inning?”

“I just wanna go home. UUUh.”

“We just got here.”

He stands up again and heads downstairs.

He seemed so excited yesterday.

When he said that he wanted

to go to the game,

his eyes smiled.

now all he cares about is home and Nickelodeon.

He comes back,

sits down,

and sets his jaw.

You can’t argue with him,

and no one does.



I can always tell his angry look-

his eyes get big and don’t focus on anything.

Instead of his usual rock

back and forth

forward and backward.

He sits still.

His head is cocked and he has no eyelids.

“Maree, I just want to go HOME.”

“Paul can’t we just stay?”

“Mary, no.”

His hand is in mid air blocking my reply.

“Please Paul.”


Ten minutes after winning the fight we stand up and

head for the exit.

I don’t even really like baseball.

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