This experience has showed me the goodness in people. We are so grateful for all the love and prayers, the monetary support and meals being delivered to my men folk back home. I am trying really hard to help JLK see how lucky we are and to teach her to find ways to pay it […]
9 months. I just need to write it. Those words… to get it all out. If you have googled or read my link then you know the average life span for a child after being diagnosed with DIPG is 9 months. On her birthday when we were first given the prognosis we were told 1.5-2 […]
My fingers itch to write. I find myself thinking about journaling now…it is such a release for me I think I am doing it a little in my head all day long and finding little ways to release all the emotion that is stirring inside of me. Heres a kicker for you. We got another […]
Today I feel like a good mom. I like this feeling. When we took her down for radiation I asked for a specific way I want her being put to sleep so we never have a bad time like two mornings ago. I can’t remember if I wrote about that but basically she took much […]
*******the follow me button is ready so this is my final caring bridge posting. I will be blogging on our love4Jlk.org site. Find the follow me button to get updates who I post***** I am writing from the hospital. Jennifer had some severe tummy issues so they admitted her. At first they thought she would […]
So the port thing wasn’t too bad at all, I kept her distracted as the nurse got it all back in and ready to go for the week. But yowsers she was in a awful mood this morning. Obviously I get why and I even get why she takes it out on me, but it […]
****To make things easier we are moving everything over to our www.love4jlk.org website including my journaling, PLEASE follow us there, but until we get a follow me option I will still write here also**** There is a song that I am sure you know…”I wanna see you be brave” are the lyrics. Driving home after finding out […]
Today was an undercurrent emotional day for me. Radiation went well. She wakes up in a terrible mood and doesn’t want to leave or get dressed. When we are there she barely acknowledges or looks up at the drs. But then after radiation is done she is her bright, bubbly slightly sarcastic self. Actually the nurse that […]
Today was our first day of what the treatments should look like from here on out. Let me tell you it’s an early day! I am so busy from the moment I wake up till I crawl into bed. I was thinking tonight nursing the baby to sleep what a gift that actually is. I […]
JLK was up before me this morning. I must say I am really enjoying sleeping with her and having her all to myself for those few hours at night. We talked before bed last night that tomorrow would be our first day of radiation. And that radiation was what all these appointments were building towards. […]
