Tag: suffering

nano course

I was invited to this thing called a nano course here at Stanford. Its a small invite only week long conference. The basic idea is to train some parents/foundation people to be liaisons for the medical community. What that means is much of what I was taught went over my head!! Some easy take aways I can share now ..  A lot of the stuff we learned wasn’t specific to childhood cancer.. but translated to all cancers. Like a 3D gel that can mimic tissue better than other mediums. .. a big step up from a petri dish, but more accessible than a animal model. The head of that lab was so jazzed and into it. It was pretty remarkable to see. That leads me to my next easy take away. There are so many cogs in this machine. We heard from multiple different heads of labs. That are all[…]

still brave

As yet another 12th comes closer I start to think about her death constantly. About what I was doing and feeling on February 9th. Remember with me..  That ring.. I remember that day. My friend coming to get it to try to save it for me.. How I hated having it off for a few hours. I love it so much. Its more precious to me than any other piece of jewelry I have ever owned. There are a lot of memorial tattoos ideas I am marinating on.. But that ring marked on me forever is for sure happening. I don’t often re-read my blogs. But I am glad I did with that one.. because it reminds me of who she was. The silly spunky way she would ask for the ring back. . and then give it to me over .. How happy she was to see me wearing[…]

remember Libby

Tony just took the boys out to go shopping for my birthday which is tomorrow. He doesn’t even bother asking what do I want.. we both know you cant buy the one thing I want. The moment I heard the garage door close I came to her room. .. I hear the sounds of the ocean in here. We never have been able to turn off the sound machine we had playing for her.. Today is so hard.. today I miss her so damn much. I feel so angry. I feel so alone. I just want to lay in her bed.. I want to find something in this house that smells like her. That feels like her. I can’t though .. there is nothing.. there really was nothing.. lice a few weeks before she went on hospice meant everything was washed.. uncontrollable vomiting means it all got washed again.. it[…]

nightmare

I am a living breathing nightmare. “I’m sorry you are living this nightmare”  That’s the only words I have for other parents when their children die.. I can even say it when its been years and years .. I am going to venture a guess.. by the hollow I see exposed when they know that I truly know.. think its still so very true. Kids were really tired tonight so they all went to bed early. Gave Tony and I a chance to just watch some mindless tv.. or not.   Modern Family.. a comedy. Little girl wearing the same Belle costume my Jennifer wore on her birthday.. the one I had bought and saved for her.. knowing it would be the perfect birthday present. The day we found out she would die. Then Criminal Minds… a character close to death.. I can’t help but tell him to go.. Tony[…]

reflex

I feel like I am circling  the drain right now… my muscles tightened and ready to snap. .. surviving only as a reflex. Its like so much is hitting at the same time. Tony being back at work was the least of it actually. I did ok with it. Set little goals like getting our laundry washed and put away accomplished.. I missed him like crazy. He has been my best friend for years… but we are now connected in a way I can never put words to. The infinity symbol comes to mind though.. I worried for him. How he is going/feeling… and how worried I am sure he is for me. Since he knows… So much will come to a head for me in a few days. My first time speaking. I hope I will do well. I hope I can be a asset in this way to[…]