never fully-clothed or intentionally misinforming

Either just after he was born or while I was pregnant, Susan gave me an idea to set up an email address for Dominic and to write to it periodically. So I've been doing that for awhile now. Today, while I was drinking coffee at the cemetery, I thought I ought to start telling future Dominic some things about his Tee-Tee. Today's email: My Dearest Dominic, I'm sitting at Highlands Memorial Garden Cemetery in Ocala, FL. I say that because who knows where I'll be when you read this. Who knows where we might live. Where YOU might live. You could be grown for all I know.  I'm visiting you Aunt Susan, my sister, your Tee-Tee. She passed away March 22, 2019 - just past your fourth birthday.  And oh my god did you love her.  The bond you shared with Tee-Tee has never been replicated, not even between you and your dad and I. It is extremely rare and special.  The day you were born, she was the first to hold you after me. And from the moment she knew you existed, w...

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...