A few months after Kai died I was invited to a round table discussion for parents of terminally ill children, hosted by the Pediatric Palliative Care program we were involved with. I was not exactly sure what this meeting would entail but I jump at any chance to talk about Kai, even if the focus… Continue reading Couragous Parents Network
I have reflecting back on my life with Kai lately. The things we did together, the choices I made for him. All along the way letting go of little pieces, bit-by-bit, of what I though life would be. Becoming a chemo mom, the mom of a child who may not survive, you learn to let… Continue reading Fear of commitment
Today was kind of a numb day. I have been keeping myself so busy lately but I realized today that I have not been doing any ‘real life’ normal things. Iv been running around doing a bunch of nothing. Going to places I don’t normally go. Buying things I don’t really need. Seeing people I… Continue reading Christmas lights through the fog
Kai’s service was pretty amazing. While it was short notice, I am happy we were able to hold it on Friday so Marks mom and sister could be there with us. I was comforted by the many people who came to hold us up and honor Kai. People I had not seen in years. People… Continue reading Kai’s Service
***monday Today was totally nonstop! We went from doing fairly well this morning to being rushed into a string of tests and procedures and surgery the rest of the day. After Kai’s morning meds his blood pressure began to drop. I wasn’t too worried about this as he is on some pretty heavy pain meds… Continue reading Tests, tests and more tests
Today was supposed to be a big day for us. First, Founders day at Perkins, an assembly put on by the students that I was really looking forward to, and then we were due in clinic to discuss treatment options. I have been pretty anxious about this appointment as I am starting to feel like… Continue reading Today WAS the day
I am so thankful we made it through the frankenstorm nearly untouched. We lost power for a few hours but didn’t loose any food or meds! It has been overwhelming to see the devastation in our neighboring states. I can’t stop thinking of our friends in PA and NJ and NY. I really don’t know… Continue reading I can see clearly now the rain is gone..