My beautiful boys


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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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Leaf Blowing on Easter.

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 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, ...
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Menu

We heard the menu just days after his discharge from the hospital. At the pulmonologist's office, we sat with Dermot, giving the nurse any information she requested. He walked in with a calming authority that I remembered from 5 years prior while in the hospital for a nine day stint. I trusted this man. 30 years experience showed by his ability of direct eye contact, and honest opinions. This was not his first rodeo. He spent the next 45 minutes explaining the pulmonary system to us and what happens to a child when it isn't functioning properly. I heard the words limited , constricted , suffocate , aspiration and reflux . Not particularly in that order, but ten weeks later those are the words that stick out. He made a point to ask me again if I had made an appointment with palliative care. I had not. He encouraged me to do so. "I thought that was just for kids that were suffering from chronic pain?" I asked. "no, they also handle putting together a plan for ...
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