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.

 

Image

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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.

“Paul.”

“Mareeeee….”

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.”

“Ok.”

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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Poetry about Paul

Paul’s Favorites:

Ketchup, hotdogs, Nickelodeon, walkie talkie’s, the words- spandex, psych, sorry…, Sorbet, bowling, swimming, apple juice, bars (frozen fruit bars), Shania Twan, Drake and Josh, Carlos, iCarly, oldies, giggles, basements, order, Mom, Hockey, saying “I don’t know.”

Mary’s Favorites:

Homemade applesauce, swimming, newness, laughing, ice cream, chocolate, MTV, talking to Mom about life’s little instructions, Michigan, driving, comfort, sleeping.

 

11/26

I often think that I have

a secret sibling connection

with Paul.

Other people talk to him

but no one else came from

the same two people.

 

 

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Everything Changes… Everything CHAAANges

It’s been awhile friends.

I haven’t fallen off of the face of the earth, although in some ways it feels that way. The spring semester always hits me in a different way. Sometimes it is just fatigue, other times it is the realization that winter is ending and new things are blooming. Either way I have noticed the changes, especially with my family.

It used to be that I would have to ask my parents to include me in Paul issues. They wanted to shield me from the “burden” of being a sibling with having a brother’s care looming over my head. Lately, they have definitely included me in things. We had a meeting to see if Paul could get a liver transplant, I have been hanging with him on Fridays, and my father has let me in on a little bit of what he has to deal with day to day. We still don’t know if Paul is on the list or not, but it is a good sign that we had the meeting at all, as in the past it wasn’t even an option.

A more emotional detailed post to follow, but I am excited about the future and the team that my family is becoming. Watch out for the Lesch’s!

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Beautiful Video About Down Syndrome Struggles

Just go and watch…

 

More discussion to come.

So many people abort people with down syndrome because they think that down syndrome people are “lesser than”. Paul was and is the best thing to happen to my life, even though sometimes he annoys the crap out of me. :)

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Plus 15 Campaign and My Sibling Video

A few days ago someone posted on my blog about a video contest for siblings. I investigated into the organization and found something brilliant.

The Plus 15 Campaign is a part of the Down Syndrome Research and Treatment Foundation and is focused on research that will improve learning, memory and speech for people with Down Syndrome. I know what you are thinking with the names for the DSRTF. I was afraid that when I clicked on it they would promise a “cure” for Down Syndrome. I don’t want Paul to be “cured”. He is beautiful and brilliant how he is and wouldn’t be the same without Down Syndrome.

It wasn’t. Phew. It is a foundation that is focused on improving the quality of life for people with Down Syndrome. This is exactly what I have wanted for Paul my whole life. He struggles with learning, memory and speech all the time. The name “Plus 15″ is so that people can help raise money to increase cognition by 15 %. They suggest telling 15 people or raising 15 dollars, etc.

They are having a video contest for siblings of people with Down Syndrome. There are 2 ways to win. Quality of video or number of “likes” to your youtube video. Here is my video below:

Please go to the youtube page and “like” the video. If you aren’t comfortable with that, you can go to the Facebook page and post on the wall. I will share it with Paul and hopefully this can eventually be a place for siblings to connect.

 

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