My life with the Sullivan boys

Stryker. That's the brand of all the hospital beds at Children's Hospitals and Clinics of Minneapolis. I know because that's what I was staring at when the pain and palliative doctor told us we had hours left with Dermot. We had discussed his healthcare directive, how aggressive we wanted his care to be, and what was off the table. The whole time, my gaze was fixed on the bottom of the bed frame. STRYKER. The doctor told us of the insane off-the-chart Procalitonin reading of 143.10, how he and his colleagues had never seen a number so high, and his CRP was 17.02, also off the charts. We discussed our options: do we say goodbye now, or give him  Norepinephrine   to  buy us some time to bring his brothers in to say goodbye? What? What the fuck is happening right now? Is this really happening right now? Wait, this is happening right now.  I thought about the house we're building. We'll have to change the design now, cut out the other half of the house that's dedica...

Noelle Jes Jess Mark Melissa Beauty Darci Lydia Lilian Erin Cynthia Zoey Amanda Beth Danny Talila Elin Mauvlette Lauren Kayla Anoma Shafali Duane Ashley Laurie Beth Donna Nicole Cate Brittany Abbey Dee Katie Tuujii Cari Clara April Eileen Emma Evalyne Cassie Isabella Meridith Mike Ashley Esther Elayna Larone Sharo Tonya Anne This is a list of some of Dermot's caregivers over the years. I'm sure I've forgotten some. This list brings up a lot of feelings. Gratitude, anxiety, shame, joy, sadness, longing, exhaustion, anger, frustration, and desperation You see, all of these people have been in and out of my house, all day, every day. They come and go depending on their dedication to their jobs and when the next step on their career ladder is met. Some I knew for years and still stay in touch. Some others show up once or twice, then ghost us, leaving us no explanation for their departure. They see and hear our family's conversations, our arguments, and they hear me when I f...

I have stuff in me. Stuff that needs to exit my body as soon as possible. stuff that makes my back seize up and my joints ache. Thoughts, ideas, judgments, emotions, resentments, longing, to-dos and worries, cravings, regrets. I often think about past relationships. One's I'd like to revisit with the knowledge I have now. I want to direct my younger self to respect myself, to say no more often. I want to actually hear when someone says they don't want me. To not waste any of my time second-guessing my choices and directions that my life might take. I want to tell that beautiful 23-year-old girl to move on. He's trying to tell you, and you aren't listening. You are not a victim in this life. Your choices are made by you. Going through life as a victim is a familiar place. It invites me in to sit in the familiar chair of longing, wishing I could be better but never getting off my ass to make anything happen. Victims think they are rational and sane. I didn't choos...

 As I stand in my decimated backyard with my leaf blower on, I think of the mom's group Facebook post last week complaining about her neighbor leaf blowing after 6:30 at night and how inconsiderate it was. To comment on this post would not be helpful. I walked outside my house this afternoon and was stunned by the stillness and the quiet. It's Easter, people went to church, had an egg hunt in the park, and are getting ready to attend brunch at the country club with friends and family. I don't celebrate easter. not because I don't believe in God. I just don't require a special day to talk with God. My sixteen year old got a shit ton of candy from Peter Cottontail and that's enough. I need to move, I need to accomplish something measurable today. The backyard is a big dogs' playground. All of the grass had worn off from the constant play between my Vizsla and my Doberman. The mud was so bad that I put straw all over the lawn to soak it up. Now, I tell myself, ...

 Suzy, I’m looking at a photo of you when you were coloring. I wanted to tell you a few things. When you grow up you will become a beautiful, strong, smart, funny human. Unfortunately, there will be a lot of pain in your life. I know right now mom just left. I think you know it wasn’t your fault, but I wanted to tell you again. Mom had her own demons to deal with and didn’t have the right tools to figure them out without hurting others. She loves you. I hesitate to say that because it’s still hard to believe that she would leave such a kind, creative little girl such as yourself. If I was your mom I would have squeezed you to pieces every day and been wildly proud of you. You have always had a level of compassion in you that came naturally. Your heart is big. I think that’s why it hurts so much when people let you down. You didn’t deserve to be forgotten or disregarded. Your light keeps getting dimmer because no one was there to be on your side and make you a priority. It happe...

What happened to me. parents divorce latch key kid alcoholic heartbreak dog runs away anxiety attacks depression what happened to you? death in the family get sober special needs child stay sober miscarriage special needs child dog dies kids are born latch key kid alcoholic special needs child anxiety what happened to you? fight with the school fight with the doctors fight to keep going depression got up stayed up can't breathe stay sober what happened to you? helped someone understood someone blamed someone forgave someone loved someone try to keep going got out of bed kept moving special needs child kept breathing kept loving helped someone enjoyed myself felt joy felt sadness felt heartbreak, in my gut discovered gratitude helped someone else helped myself discovered compassion special needs child stopped breathing remembered how to breathe taught someone else how to breathe.