never fully-clothed or intentionally misinforming

Today I had a really rough time. Last night I couldn't sleep. Because I made the mistake (it's not reallly a mistake) of reading my Instagram DM chat with Susan and reading my Facebook DM chat with her too. Goddamn I miss her. I ended up sleeping in until 10 AM while Dominic watched cartoons in my room. We got up, I made him a weekend breakfast, did some around-the-house projects, and then packed a lunch and headed to Green Lantern Antiques for the afternoon. There Mom, Dad, and I talked about Susan a lot. And we all three cried. It's so hard to comprehend that she's not just someplace else right now - like we're not just waiting for her to get back from somewhere. Goddamn I miss her so much. We went home from the shop around 5 PM. Mom and Dad headed home too. And from that point, my heart was just so tremendously heavy. I made Dominic some dinner, we showered and bathed relatively early so we could snuggle up and relax for the rest of the night. As we wer...

It's a strange sensation - that of death crossing your path. I honestly don't think it can be summed up in singular words. I can't just call it chilling, because I'm boiling with rage. I'd never call it sad because the word has lost its meaning to wilted flowers and sappy, tragic love stories on the Oxygen network. I could call it catastrophic, but even that word is overused in this fucked up reality - what with genocides and humanitarian crises across the globe. There's just nothing that compares to being toe to toe with Death. There's nothing like it at all.  Maybe the closest I've come to figuring out a word for this sensation is unpredictable . I wake up each morning and I don't know. I just really haven't got even the most remote idea of what the day will look and feel like. Right now, for instance, I just got back from visit Dominic at Harmony. It's the end of the school year and today was Water Play Day. He was having so much f...

I had a nap on the couch. I just woke up to a phone call from Patrick. And while I was laying here trying today decide if I should go back to sleep, I remembered my dream. Last year, Susan came to Dominic's year-end performance for Harmony Learning Center. During the nap, I dreamed that she came to the one this year. I was running late and when I got there, I first sat down in the back. And then I saw her a few rows up, with no one sitting on either side of her. I quietly moved up and sat down with her. We held hands as we watched Dominic do his last school performance with his classmates at Harmony.

In ink on my wrist you're permanently affixed. You and I, always.

I had a dream right before I woke up and if I don't write it down, I'll forget. Susan and I were together in a hair supply store like Sally's. We were looking at hair dyes and talking about how she gave herself a cut and color once. And she loved it and I loved it and some people made fun of her for the harshness of the black she chose. We hugged so hard in the dream I could feel it in my sleep. And when we we're hugging she told me softly that all her fish hooks we're missing. But she smiled when she said it, like maybe she knew it didn't make much sense. Or maybe she knows someone swiped them from her room to keep as a memento. (I thought of Dad.) I will remember the feeling of that hug and the smile on her face all day. Edit: I have thought more about Susan mentioning fish hooks. I wonder if it's some kind of symbolism. Not that someone literally took them, but that maybe she's missing the ones she needs in order to catch something or someone. It...

I feel like my heart is broken - or maybe like a piece of me is missing. This whole Living Without Susan thing is going to take some getting used to for me - I imagine for all of us. Honestly, I could come here and tell all of you all about Susan, the adventures we shared, the memories I have, the love she held in her heart for each of us. But we all know Susan - that’s why we are all so sad. So, I’m going to talk about me instead. I’m going to tell you all how profoundly l ucky I am. And how honored I am to have spent 34 years living in Susan’s light. I learned so much from her. I learned courage and tenacity from Susan. And I learned unwavering dedication, loyalty, and strength from her as well. I benefited so greatly from her presence. It’s hard for me to comprehend that I can’t do that anymore - that I can’t just bask in her radiant light anytime I want. I think there’s still a protective layer of disbelief in my brain - and maybe that’s self-preservation, I don’t know. But...

"Whenever my head starts to hurt Before it goes from bad to feeling worst I turn off my phone I get down low I put my hands in the dirt" --Jason Mraz We made a memorial flower garden for Susan today. JM and I took Dominic for breakfast and then to Lowe's where he picked out each flower he wanted to plant in Tee-Tee's garden - careful to include at least one from each color of the rainbow.  It's a beginner level garden and Dominic is looking forward to the responsibility of watering and loving the flowers. He also knows he shouldn't pick them.  : While we were planting, we had a visit from a lucky lady bug. She came by quite early in the garden-making process and when we checked in at the end, she was still on that little purple flower. Hi Susan!

Ray Charles once said "I was born with music inside me. Music was one of my parts. Like my ribs, my kidneys, my liver, my heart. Like my blood. It was a force already within me when I arrived on the scene. It was a necessity for me - like food or water." Susan believes the same about herself. She believes it so wholly that the entire quote is tattooed across her ribs. Fitting, right? I am confident each of us connects music to our memories of Susan. And honestly, we'll all p robably connect different kinds of music to her. She was beautifully open-minded about music just as she was about people. She found something to appreciate about just about every kind of music she heard. My big brother Jeff has created this playlist. It's wonderful, eclectic, and thoughtful, which is exactly how she would have made it herself. I am listening to it right now and it's making me happy. If you're missing Susan like I am right now, give it a listen .

For anyone coming Friday and Saturday to pay tribute and celebrate Susan's life, I feel it's important to encourage you to wear whatever you feel best represents you for these moments. Susan accepted everyone for exactly who they are. She was so vibrant, full of life, unique, and fun. And equally as important - she embraced those qualities in others. I know she cherished and embraced the individuality of her friends and loved ones, so it only makes sense that we express our individuality in her honor.

I have been putting off posting this one. Something about it being an obituary  feels so permanent and all and I really don't think I'm ready for that. Mom, Dad, Jeff, Kelly, and I wrote this. We sat together and we struggled with almost each individual word. And you know what I realized about halfway through? It doesn't matter what words we use or what we talk about, nothing we could ever write would be enough. Nothing could fully encompass the breadth of Susan's life, her a ccomplishments, or the things that make her Sooz. So this is where we landed. I love you, Sooz. I'll see you on the other side.

No one ever told me paying for a funeral is among one of the largest expenses of a person's life. And when your life has the breadth of medical impact as Susan's, no insurance company is willing to help you shoulder the cost. Susan tried. She sought insurance options. She either found blunt rejections due to her existing health conditions or an offer occasionally, but with a premium so high she couldn't afford it. Mom and Dad spent their lives loving and caring for  Susan , just as any parent would. And now they're retired. And they are burying their daughter. And they're using their savings to do it because what other option is there? Fundraiser

For the rest of eternity, we're all going to honor Susan's life and legacy. But for these days in particular, our wish is for everyone to come together and celebrate her life with us. Please share this post with your friends and families. **UPDATE** We did have to change the location of the funeral. Everything else stays the same. If you shared this outside of Facebook, please let everyone know the funeral address has been updated.

There was this girl … She was born into this world to change it. And she did. As evidenced by every individual who has reached out to our family already, everyone who has written their own testament to her legacy, and all those who undoubtedly will, she did it. Susan changed the world. My whole life I have marveled at her strength, longing so deeply to possess it myself. I studied her patience, her perseverance, her optimism - and yet, after 34 years of close, intense observation, I still haven’t found the source. But in all those years and the adventures they held, I did discover the depth of my sister - so full of love, radiant with light, so accepting, funny beyond measure, so joyful, and so unapologetically herself. Right now I have so much anger - there’s just this visceral rage inside me. But it comes in waves and it’s fleeting. The feeling that is steady and sure - the base of all this grief of mine - is peace. I have such peace in knowing that, in spite of her obstacles...

I was sorting through a box of stuff on the conference table at work. We had just moved back into our building after repairs were completed. It felt good to be back in our space. I wanted the conference table to be cleaned off before Bill got here - a symbol of our progress. The office phone rang, Willy answered it on speaker phone in his office. Rachel looked up at me and said, "if Ralph Scott is your dad, he's calling." I stepped toward Willy's office when I heard my mom's voice. She said, "Bill?" And Willy replied with "no, it's Willy." And as I was walking toward his door, she asked for Bill or John. My gut knew it was bad news before my brain did. I felt my stomach twist into a knot. He told her neither of them were here. She said, "I need you to get Alison into your office. I have to tell her something." He told her I was there. I said hello, I asked her what was going on. She said "we had to call paramedics for Sus...

I haven't done a single thing today other than shower, sit with L&B outside for the five minutes it was actually sunny, and grill some hamburgers for me and Susan. I don't mind it this way. I really don't. It's been pretty damn nice actually not having anything to do. But I want to talk about Thursday. I got on some kind of thrilling energy swing on Thursday. I did 100 wall push-ups and 20 crunches AT WORK. After work, I took the dogs for a 15 minute brisk walk around the neighborhood, then went for a four mile bike ride before running my errands. And then! After my errands I went the gym to sweat out in the sauna and do ten power laps in the pool. I've never felt so powerful.

1. Today Travis, Heidi, and Susan are coming over to the house to have cheeseburgers off the grill and play some board games. We like wholesome fun like that. 2. My boss is going to a meeting tonight to officially approve reimbursing me the $350 for the web programming class. If you've been following awhile, you know what that means. That means I've launched the new site for the labor union and am finally the webmaster here. When I created the site, I thought it was awesome, but the more I look at it now, the more I think I could have done more. But consider it just launched at the beginning of the month, it's probably best to not refurb it so soon. =] Here it is if you want to take a look: www.ibew222.org . 3. I am 100 % satisfied, and quite pleasantly surprised with the new design of my blog. It's way cooler than anything else I've used or had or made. =] I'm hoping some time soon I'll have something legitimately worth your while to say. But for now, I...