Some girls are just born with glitter in their veins


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 longer to fall asleep and the anesthesiologist tried to separate us way too fast and she remembered it and it scared her. I asked questions to figure out what was different in order to make sure that didn’t happen again. I made sure it didn’t and it won’t again. I also asked the nurse putting in the tube the size of it and how versed she was in the procedure since it went so poorly the night before and I wouldn’t be there to watch it this time.

I had them pull her off meds when I felt like it was time versus waiting. I kept asking questions until we found the right solutions. Today was far from perfect. She was miserable. But it was a good day still somehow. And I hope its in part because my husband was there. I need us to hold our team together.

For the first time she raged. She cried and screamed and lashed out. I could see her internal debate playing itself out in her behavior. She was angry with me for not fixing what was going on (in the moment the tube in her nose, but it was bigger picture I am sure) but she was also so desperate for me to stay there and be with her while she released. We let her go, let her release and empty her emotional self. I didn’t let myself worry about how loud she was being or other patients or what the nurses might be thinking. I just let her drain it all out and fill up the room with her pain. And then I helped her rein it back in and gain control. Because thats what Jennifer needed from me.

She was miserable though. I will do everything I can to avoid her having to have a feeding tube. I know it can be a result of this tumor but I am going to explore all other avenues I can to prevent it in her future.

Our nurse Heather was great. Right before she was discharged they had to draw blood from her port. Even though its not painful its very traumatic for her. I told her nurse that and she took her time and explained to JLK what was happening and even let her get involved. In the end she was still anxious but not fearful. So another success in the books!

We were in the stem cell portion of the Bass Center. The clean protocol made us so nervous. Just wanting to be sure we didn’t let a germ hitch a ride back there. One thing that surprised me were these super strong sticky mats they have in the doorways. I kept forgetting they were there and then thinking I was going to rip apart my flip flop walking across it. Through these snippit moments I am learning so much about the world of pediatric cancer. There are so many different stories and ways and paths families find themselves on. I wonder do they all plan to make the impact I do? And can I actually pull off my long term goals of genuinely making a difference and revealing a purpose in our loss?

After we were released we went out to eat and wandered around the shops together. One store we went into had all sorts of knick knacky type of stuff with sayings on them. I have always liked that sort of thing, but I found it interesting how much I read quotes now with a different set of eyes.

Verses too. Sometimes a prayer or sentiment gets shared with me and it strikes a nerve and makes me more angry then at peace. And the next day I find solace in the same words. For me its a constantly changing conversation…I don’t think I have ever been this prayerful in my life. But not in the way I would have imagined I would be in this situation.

I am not bargaining or begging… I am simply talking..almost all the time trying to sort this all out and not turn my back. This is not to say I am not questioning and struggling. But I am also not mad at God like I thought I would be. I am actually looking for him in the day to day more than I ever have in the past. This isn’t a purposeful action but my mind and maybe even my souls natural reaction….the want and the yearn to not be in this alone this…especially in my quiet moments.

I like this relationship too. I like that its mine and its personal. I like that I feel like its unique and quiet.

I feel like there have been so many signs along the way. Unpacking my winter time clothes I found a shirt I had bought 2 yrs ago from goodwill that was from the Bass Center. Before JLK was born we decorated her nursery in dragonflies and thats always been our symbol for her. They are representations for somebody who has passed on. (we didn’t know that at the time) I can picture my other kids grown up but never her…I have even mentioned that to people how strange it was that I couldn’t picture her grown up. And what I just learned today, St. Jude’s feast day is Oct.28th. Her birthday and the day she was diagnosed with DIPG.

And I ask God about these signs…was he always preparing me?

This is the thing about my journaling … that it is such a exploration for me. When I sat and started tonight I was full of positivity and lightness. I assumed my writing would flow that way…It hasn’t…I am not even sure how I ended up here as I wrote.  Yet here we are…

I am doing my best to ride this train. Both my own personal journey and the one with my daughter. But  I dread sleep at night since it means when I wake up we are one stop closer to the end of one of those journeys….

And no matter how many signs there have been I will never be ready for that…