Thinking

I got to hang out with Rob last night. He has been practicing using a walker. He did a great job. I was nervous the whole time that he was going to fall. He uses his left hand to fix the fingers of his right hand into a brace on the walker. Then he stands on his left foot to swing his hip so that his right foot moves forward. He puts his weight on it and then makes a quick step with his left foot. That little bit of mobility must be great for him. His mom said that there is a brace he wears around his waist to connect him to the walker. It gives him some extra support.

He also had to sign his name on some paperwork yesterday. His mom wrote out his name and he would copy it. Some of the letters he remembered. But he was thinking 'f' when the next letter was 't', and things like that.

Learning to walk and learning to write... Things he's known how to do the last 26 years of his life he is beginning to piece together again. Ten days until his birthday! The big 3-0.

Yesterday he was upset because he was trying to understand a medication switch. He knew that he used to take four pills a day - one every six hours. And now he was to take three a day. So he was just trying to figure out how many hours between each dose. But his mom mentioned it might be good if instead of going all the way down to three a day if he took 3 1/2 for a while. That totally pissed him off. He is hardly able to express himself and to say what he is thinking. And to see him express frustration makes it so hard. I tried to turn the conversation back to what he was trying to figure out first and once we got that settled, we addressed the 3 1/2 pills issue.

I'm getting much better around him. I don't cry as much and I think he appreciates that I talk to him just like I always have. He was getting pissed that his mom brought him vanilla icecream when he wanted 'black'. He told me to throw it away but I just said, 'Quit your bitchin'. This is all we have. Do you want some caramel on it?' And he ate it.

I am lucky to be here. I am glad he still wants me in his life. He brings me joy.

Las Fiestas

The last time I had a party at my house was two years ago. Rob and I had just moved into the house we bought. It was super fun. Lots of great friends all over the place eating and boozing and writing inappropriate phrases with magnet poetry on the wall. I had a great time.

So, I don't really know why it's taken so long to have people over again. For a time, after Rob and I split up, I really didn't have a ton of people who I would have invited over. I lost a ton of friends during the split. And now, I'm back on my feet and feeling great about life and love. I am grateful to have such incredible people in my life who have stood by me through all the terrible and seen me through to today... which has its own triumphs and struggles. But it's time, isn't it? To celebrate these people, to celebrate life and summer, to celebrate new people and neighbors, to dance on the grass and to blow smoke into the night. To stop. To take a moment to love the people around me. It's time! So I will fill my belly with mojito and watch the firelight dance across the faces of people that I adore. It is them that make my days alive and I love them.

Beer and Tiki Torches and Music

You are officially invited. I will set up tiki torches in the backyard. I will grill meat. I will make you drink beer and play around the world ping pong or something. We will play loud music and invite the neighbors. We will sit on the grass and stare at the stars. We will watch the little girls dancing and we will dance too. We will hear the bugs chirp and we will see the lightning storm in the distance. We will eat and breathe and love. We will sing and laugh. I will catch your eyes in the middle of it all and we will smile.

It's summertime.

Saying Goodbye - Part III

I showed up at Rob's house today. I thought we were going to go catch a movie. When I got there, Rob mentioned he was scared to go in the car with me. Because I would have to lift him into the car and lift him out into his wheelchair. And he didn't trust me enough not to drop him on the ground. Fair enough. When he was first sick, he weighed less than me. But now he is on steroids and carrying him around might be a pretty tough task. So, we went together down the street to a little Cuban restaurant. There was a table near the door that we sat at. And when the menus came, Rob asked that I read the menu to him. He held his finger on the one he wanted so he was able to order for himself.

Independance. It's got to be so hard. When he wants to call me, does he need help finding my name? Fuck. He can't even pee without help. I don't have a clue of what it takes to be his caretaker. I used to. I used to inject heparin in his hickman - a port that was inserted into his chest to take medication through. I would care for his wounds. Get him into bed. Advocate for him. Help him up the stairs. Make his meals. Clean up his emesis bucket. Help him into the shower. Keep track of his medications and chemo. Call the Medicaid bastards to get them to pay for his treatment. Now it is very different. He needs help dressing. He has braces on his legs. How do you provide support in this situation without doing too much? Or too little? It's a fine line.

He mentioned how frustrated he was with his mother. She apparently said something to the doctors that kept him in the hospital an additional three days. At least that is his point of view. She is so loving and caring that it stifles him sometimes. But it's so hard to understand what he wants or what he needs. So when we made rootbeer floats and she brought out some chocolate sauce, he nearly flipped because he didn't want it.

His mother asked me if she could take my picture. They are making a speech board for him to use to communicate when he begins to lose even more speech. Fuck. Are you kidding? I've worked with special needs kids at school who use these boards. And now you are telling me that the man I married... the man who pulled my garter off my leg with his teeth... who led five pitches to the top of Independance Monument... who traveled halfway across the world to trek across Russia has to now point to words to tell me what he means?!?!

God in Heaven,
He said he wants to make it to his 30th birthday. That is fifteen days away. This man wants to survive fifteen days and not a day more. Today he said he just wants to stay at home and die. Do you hear this, God? He is ready. God listen to him! Before he loses more. Before he loses the use of his left hand... his left leg. Before he becomes totally trapped within his own body. He needs to be released from this body and this world. Please.

Letting Go

Wow. My heart feels super light. I woke up this morning almost drowning in tension. I had a long drive home to think about why I was conducting my life in this manner. And it all boiled down to expectation. A big concept in my life in the last year has been the idea of obligation. No one likes it. You know? I don't enjoy feeling obligated to take part in something. I want to take part in it because it enriches my life or because I give something of value to it. Whether it is a relationship or an activity or a job... whatever it is, I want absolutely no sense of obligation surrounding any of the choices that go into it. I know that's not logical all of the time. But I can certainly choose to live my life in a manner that decreases both the obligation that I feel and the obligation that others feel towards me.

So today, I let go of some ridiculous expectations I had for someone important in my life. Frankly, I don't even know what some of these expectations were, but I just felt a sense of constriction that wasn't positive at all. And as soon as I released him from these expectations, my tension disappeared. My heart was light. And I was ready to live my day in a beautiful way.

This is going to be a very good lesson to hold on to.

I'm Out

Today I just wanted to run for the hills. I don't know why. I wanted to throw away my cell phone and grab my dog and head for some beautiful rock. Climb. Eat. Sleep. That's it. I know it's not logical, but I kind of wanted to go by myself. Totally solo. I really want to go somewhere in South America. I've wanted to go for a year now. And just bury myself in the culture. Dance. Eat. Drink. Talk. And soak in life somewhere else. Not that my life is bad. It's quite good. I just got restless with it for a second and I wanted to exhale it all out and breathe in something new.

On another day, I would love to take someone wonderful. To see new things with them. But today I just want to leave alone. A book. A pencil. A camera. I want to wander along the beach and splash my feet in the water. And sit. That's it.

Saying Goodbye - Part II

I went over to his house today. I've been wanting to share all that stuff with him that I wanted to say. But time keeps ticking by and instead of making excuses for why I couldn't do it, I just did it. The first thing I see as I walk in is his wheelchair. There are baby monitors around just in case he needs help. There's a special seat over the toilet. There's a wheelchair ramp. His face is puffy from steroids and the right side of his face droops. His right arm lays next to him almost like it wasn't part of his body anymore... a noticeably thinner arm than the left. The muscle tone is disappearing and his skin is softening.

I wonder how he is feeling and what he is thinking. And I don't know whether he's able to share that with me. I don't know whether he wants to share that with me. How must it be, to helplessly watch your own body wither?

I couldn't even get through five minutes without tearing up. And so I cried. And I told him a few things that I had wanted to say. And there were things I forgot to say. And things I wasn't ready to say. I wasn't ready to say goodbye. That's for sure. And maybe that's something I should never say until he is laid to rest.

It breaks my heart that he is dying. I wonder if his mother is scared each morning when she wakes, wondering if she will find her son has passed away. I wonder if he is ready. I wonder if she is ready. You know, when you are in a situation like that, you just do what you have to do. And abnormal situations become normal. When you have no choice... no alternative, you have to embrace the only situation you have. And his mom is doing really well. She is amazing. And I know it brings her joy to be able to care for her son.

God... it looks to me as though there is no coming back from this. You know what is going on. So please consider it all. And let him pass on in peace, away from pain and away from heartache. Away from frustration. Thank you for him. For his love and patience and faithfulness. And take him Home.