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..
***Over the weekend Kai and I are back at Camp Sunshine and this time we brought Gigi (my mom)! She has been there to witness most of the awful things Kai has had to endure over the past 16 months I really wanted her to experience some of the good stuff too. Camp is one… Continue reading Camp 2.0
The past few days have been tough on me. Kai is feeling better since we are treating his ear infection, but not as good as I had hoped. I’v been spending my days researching these stupid tumors again. Looking for treatments. Hoping that I can find something that I can convince myself might help him.… Continue reading Getting hard to do nothing
We had a good little stretch there. The week leading up to the wedding Kai was doing very well. He was on minimal meds and he had been doing great with all of his activities. I was really settling into the possibility that we would have many more of these content, stable days to share.… Continue reading ‘typical’ kid stuff
