I'm just a sobbing mess right now. I will never be the same person that I used to be. I've already changed... that I can see. I know that Eden is hurting... she'll be 8 in a few weeks. It was always Ollie and Eden for so long and then years later Jaren came into our family and then Phineas. I feel like I'm becoming a different sort of mother. I just can't seem to bear my burdens. I feel lost and hoping for someone to help me find my way. I can't be the light shining in the darkness for others right now. Sad doesn't even come close to the feelings that I feel. Death feels like it's all around me. I need to find the joy in the journey, yet I'm struggling immensely to find anything past despair.
I told a good friend of mine that some days I feel blank... some days I want to scream and cry... At times I feel like it's just a horrible nightmare and someone will say wake up... no such luck. He's doing so well right now. I have to count THAT as a blessing. I truly do. Today I am just hurting so much. Hurting for him, for my other kids, for myself and the rest of the family.
I was reading through several of the DIPG sites about each child and just sobbed and shook my head. Can this be true? Nearly all of the DIPG kids have passed? Yes, there is always hope, but this future outcome is bleak. Some days I feel hopeful and others I feel absolutely hopeless. It is a nasty thing to have to live through day to day not knowing how you are going to feel hour to hour or minute to minute. I just wish to meet these other families and be able to support one another in these darkest times. I feel as if I withdrawl from people because of their withdrawls from me. I just don't know why do many other things happen because of one thing. It's not as if it's easy to deal with them all at the same time!