The Murphy Boys

Dec.01
0

The love challenge – Day 1

Posted by in Ayrie, Love

I’m part of a pretty amazing Wellbeing program. I started it back in May of 2015 and I’ve met some truly incredible people through the program. One considers herself my heart because she represented my heart in an exercise we did together. I have to say, in the months since she started telling me, “I’m your heart. Pay attention to me!”, I have paid attention to my heart more than ever before. Yesterday she sent me a message: Nora – Text me about LOVE: XXX-XXX-XXXX I invite you to a December…read more

I am here

Posted by in Ayrie

Five years ago today I was boarding a plane with Ayrie for Boston. I was scared by Ayrie’s breathing. It was so hard for him. But I was expecting him to have nothing but another routine surgery. We had done this twenty times before. Hours later he tucked in for the night in a newly renovated room at MEEI. I was in the bed next to his, reading. I was in a PhD program at the time and always reading. I felt so good that we had made it to…read more

Sep.28
1

cremation

Posted by in Ayrie

One of the first decisions I had to make was about what to do with Ayrie;s body. I wanted to donate it to science, but for some reason they didn’t want it. I never asked why. I could have asked for an investigative autopsy, but that didn’t feel right. I didn’t have opinions on what to do with his body before. Somehow, even though I knew that he might die, I had never even spent one moment of time thinking about a funeral. Why not? It made no sense. And…read more

Aug.10
0
Nov.25
0

#BlackLivesMatter

Posted by in Ayrie

    I’m feeling like my brain and spirit are super-charged tonight. They are making connections that I’ve never been able to make before. Here is one of those insights: it’s important to know, in the core of one’s being, that you matter. If you knew me well while Ayrie was sick, and we were making frequent visits to Boston for his surgeries–or if you met me later and heard my story after he died–you know that I hold deep gratitude for Ayrie’s surgeon and hospital . I’ve probably shared…read more

Oct.02
2

balance

Posted by in Ayrie, My journey

I have written so many times about balance, right? Well, this is one of the times that I think I did it! So just a quick post to celebrate. This weekend marked two years since Ayrie’s passing. And I will tell you that it feels more like two months. It is raw and painful. Rarely does an hour pass that I don’t think about Ayrie. about how he should be here, how part of me… the very essence of me and Shiya and our family…is gone. So rather than stay…read more

f*&! the stages of grief

Posted by in Ayrie

Excuse my language, but check out this “stages of grief” bullshit. Really? Return to a meaningful life characterized by employment, self-esteem and meaning? It’s amazing that this model has been the dominant model since the 1960’s. September 29th marks 2-years since Ayrie’s death and I miss him so much sometimes that it takes away my breath, my will to live. Last night I had a dream about him. He came back. But no one cared. Everyone forgot about him. They were going on with their lives around me. No one…read more

Aug.19
3
Dec.09
3

in the first twelve hours

Posted by in Ayrie, MEEI

My aunt laura came to MEEI soon after Ayrie died. She drove through the middle of the night, pulling over to cry, pulling herself back together to be there for me. My dad had a surgery scheduled for that morning so my mom, of course, was with him. The pediatric floor is on one long hallway with locked doors at one end. I remember seeing the doors open and a nurse ushering Laura in. I was so relieved. I suppose we hugged. I suppose we cried. But these moments are…read more

where’s ayrie?

Posted by in Ayrie, Soul

This is a question Shiya asks and it seems that there are two answers… what happened to Ayrie’s body AND what happened to Ayrie’s life force.  While the spiritual component of this question is hard to answer and one I’ll write about later, I wanted to share my thoughts about his body. ***** When I think about Ayrie and I think about life.  I feel his energy, his vibrancy, his contagious smile.  As I held him in my arms early September 29th while the medical team was trying to resuscitate…read more

Oct.08
1

King of the OR

Posted by in Ayrie, MEEI, RRP

We just returned from New England and Ayrie’s 21st surgery. We went to our favorite hospital with its supremely talented staff, Mass Eye and Ear Infirmary. A lot of friends, new and old, stopped by to see us. The highlight for Ayrie this visit was the crown that Ashley, the child life specialist, made for Ayrie when we were waiting on the surgical floor for the procedure to start. When Nancy (the OR nurse) and Martin (the Anesthesiologist) wheeled Ayrie down the hall to the OR he was putting his…read more

Jul.13
1

travel funds…only helpful for those predictable diseases?

Posted by in Ayrie, MEEI, travel

For those of you who are new to this website, my son has JORRP, which you can read about here, and you can read more about his story here. Ayrie’s breathing is deteriorating.  I don’t know if it’s regrowth of the papillomas blocking his airway or a side-effect of the medicine he takes.  I don’t want to goto the local hospital where they know nothing about this disease and have them admit ayrie, run a lot of tests that don’t give them the right information and then force me to sign him…read more

Jan.25
3
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