Tag: tony struggles

our bed.

Her bed. Well it was really our bed. Me and her. We shared some horribly beautiful nights in that bed. At first we borrowed a futon. But a death bed for your six year old isn’t the kind of thing you borrow. We needed a new one. Comfortable enough for her to die in.. big enough for us both to sleep in. How do you pick something like that out? Luckily some friends of our did it for us. They bought it and dropped it off for us. No questions.. just something  they could do to help.. to lessen a burden. I rarely lay in it. It’s so hauntingly empty. But I sit on it. I look at it every morning and every night. Never changed in those hours.. How often I reminded her to make her bed.. Oh how I long to see it messy with her arms and[…]

done good

We went to an event last night.. me Tony and our.. well we don’t have a official title nailed down.. but basically our COO for Unravel.. It was to support Innovators Network who basically support Project Violet. I am a huge fan of what they are doing and how they are doing it.. far too intelligent for me to explain.. but worth a look! I love that people on the West Coast are starting to stand up and bring their support to these amazing west coast minds.  It was a good experience. I am glad we went.. but I am also left today with a dull ache and sadness. I am trying to sort out why. I thought a lot about Jennifer’s oncologist. How amazing she was to Jennifer and to me. . How very lucky we were to have her. And I thought about the incredible Dr. Monje and her[…]

wait

See you at dinner. That’s what Tony said to me tonight before he went to bed. Tomorrow is his first day back to work. Its going to be a rough transition for all of us. His work has been so good to us.. they are allowing him to come back slowly, 3 days a week. Its interesting, looking at that top sentence I realize how much that thought used to carry no weight. It was normal life.. it is normal life for most people. Maybe thats what makes it so profound a thought for us.. it shows how changed we are. That being apart for a day is scary. What a great man he is. All he sacrifices for us. He missed so much time with her.. its one of the reasons I get so upset she didn’t have that 9 month average time parents are quoted with DIPG. We[…]