Big brother Owen

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To give care.

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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...
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More time.

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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...
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Letter to Dermot

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"Letter to Dermot" Dermot, I’ve been trying to put off this letter for quite some time. I just gave birth to your little brother and have realized how heartbroken I am over you. I look at pictures of you and get a tinge of sadness where I should get joy. I see the things you cannot do and the things you won’t be able to do. I’m so sad about it. I feel responsible, so much more than anyone else knows. I look back on the day you had your first seizure and I’m so angry with myself that I didn’t know what was happening. I feel like the length of time was my fault and that it caused more damage to your brain than was necessary. I’m so sorry. I know that you deserve the best in everything for your life and my regrets run deep. God has a plan for our family, I know. All of the challenges that you go through help make us stronger, but I wish more than anything that I could take all the pain away, all of the drugs, all of the therapy. I sometimes imagine you as a normal little guy get...
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