Deceiving

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 still sucks. I can’t just allow her to be rude and refuse to do what I say. But I also think this dance is good for us. Her going back to school for a bit after radiation is an option that has been brought up by a few people here. I have been told it might scare her that she all the sudden doesn’t have to go anymore. But I think for her it’s not something she is even noticing. However me discipling her and being cheap is something she notices.

The day after we got home from being inpatient at the hospital she was being so mean and nasty to us and her brothers that even though it was hard instinct took over and I put her in a time out. I am so glad I did that. Immediately we saw a huge improvement in her behavior. It was like she needed to be reassured that she still had rules to follow. Since then I have tried hard to be aware of the fine between her reaction to medications and being so tired and just pushing the line to see when I will hold it.

Every day after radiation we now have a tradition of getting breakfast with whatever family member comes to hold baby Charlotte for us. She really loves it and looks forward to it. The main Stanford cafeteria has a good selection of gluten free foods. Before her treatment it’s like she gets her game face on. When I wake her up she is mad at me and refuses to do something I ask of her and gets really mad at me for everything I say/do. Then at the hospital she just gets quieter and finds her zone by playing on her iPad. But afterwards for breakfast it’s like she breaks free and is herself again. I really enjoy getting to watch her interact with my siblings and for her to have that time to be the center of attention.

My brother that came today had a few gift bags that other people asked him to bring. One of them had chapstick that was marked gluten free. She was so excited that I didn’t have to call the company to ask if it was gluten free, she just got to use it right away. It’s so nice to get to see how the little things mean so much to her. Then we went to a park…ok maybe we got lost looking for the first park and ended up at another! But when we pulled up she looked at it and was too tired to get out to play. They even had swings one of her favorite things to do and she just wasn’t up for it.

It’s hard…we are doing this radiation treatment to improve her quality of life….so times like that when it seems to be doing the opposite are really hard. That’s the thing with this type of cancer. It’s so tricky. She looks healthy and fine. I am embarrassed to admit this but I look around at Packard and am jealous of the mom walking past me with a bald child obviously in chemo. I never in a million years would have thought that was possible. JLK looks the healthiest but probably has one of the worst diagnosis. Just goes to show how deceiving looks can be. Just like when I walk around with our 4 kids 6 and younger. I know people can look at me and think how easy it must have been for us, having no idea how much infertility we went through before becoming parents. Jennifer’s parents.

To the child we are now trying to ready ourselves to lose. In my quiet moments I remember that’s my new reality. It still feels like a dream to me. Like it’s not all real. It can’t be. This can’t all really be happening to me, to us. To her. After breakfast we got some amazing ice cream and walked around the shopping center looking for a GF restaurant that came highly recommended. Along the way we found a paint your own pottery place. Another thing I always wanted to do with the kids but was just delaying and too cheap to do it. We spent a hour and a half there painting and creating together. A new experience in the books for the both of us. After that she was just wrecked. So tired I ended up going to get the stroller for her since I was wearing the baby and she didn’t want to be carried. Another situation I would have looked at me and judged without knowing why a 6yr old was in a stroller. Deceiving. We ended the night with dinner in downtown Palo Alto and a search for another dessert place rumored to have yummy GF cookies. We finally made it only to find out there was way too much potential for cross contamination. It smelled so good in there and my girl has a serious sweet tooth, but she took the disappointment in stride. Then we found a candy shop and bought every kind of gluten free candy we could find. She earned it.

I like this journal tonight. It feels very mundane and something I can look back on when I am ready to just remember a snapshot of a day spent together.

***Dont forget we are migrating over to our website www.love4jlk.org***

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