I haven't written in a while, for a few reasons. Primarily, we've been busy the last few weeks. We went to the lake with friends and had a great time swimming and tubing. Cool, rainy weather be damned. We went back-to-school shopping, did birthday things for my husband, and caught a Lindsey Stirling concert. We had cousin-friends visiting and went to Carowinds for the day and the pool for another. In addition to all of that, it is also just really hard to find time when being a stay-at-home mom for the summer. I've been trying to soak up as much kid time as possible. While I'm looking forward to our regular routines and I'm so excited about my youngest starting kindergarten, I don't want the freedom of our days to end. Grabbing ice cream just because, letting the kids stay up until 10 pm, staying in our PJs all day if we want. It's all pretty sweet.
All the activity also lets me shove cancer to the back of my mind most of the time. We started trial medications mid-July, and luckily, my daughter hasn't had any side-effects yet. She actually seems to feel pretty great. However, she is still on steroids, which may be keeping tumor symptoms at bay. We just started weaning down today. She has been on 2 mg since June, and we are going down to 1 mg for three weeks and then reducing it further if everything is ok. I know many kids can't come off of steroids once they start. My daughter is on a relatively low dose, so I'm hoping we will be able to continue tapering. I take her back out to Cincinnati next Monday for routine blood work and a check-in. I'm hoping everything will look good and it will be a quick trip. School starts next Wednesday, and I really want to be back for my youngest's first day.
Yesterday, I was talking to my husband about schedules for the next few weeks. We started talking about how my youngest's interests/wants/needs were shoved to the side a bit last year. We have been so consumed with appointments, clinical trials, surgeries, and recoveries, that we haven't had much space for anything else. We are trying to make sure we invest in her a bit more this year. With my summer free time, I started my youngest in swim lessons. She absolutely loves being in the water and has come so far in such a short amount of time. I also signed her up for a dance class that starts in September. She was very adamant that she didn't want to do gymnastics, soccer, or anything else. Just dance. So, dance it is.
For extracurricular activities, my oldest decided that she wants to learn the drums, so I also signed her up for lessons. It wasn't without some hesitancy because of what I know happens to coordination and hand-strength when the disease progresses, but also, fuck it. It's only money and a slightly awkward conversation with the drum instructor. Who knows if or when things might get worse. We only have the present, so Girl Scouts are out, drums are in.
My husband and I are trying to honor our kids' interests, encourage them to grow into well-rounded people, and are doing our best to get them there. But, in all the stress of regular daily life, not to mention all the cancer treatments, how do we find the time for ourselves as well? If we had the time for ourselves, and we could get rid of the guilt we feel for not always being with our kids, what would we even do? What are hobbies anyway? I started following this Facebook page called "crochetcrazyhelen" who makes art with sticks and flowers and other found objects. It's soothing in a Mr. Rogers way. I've been really feeling the urge to make stuff, but I don't know what. So, if you see me in the woods looking crazy and gathering sticks, I'm just working on my new fairy house hobby.
A Little Dopamine Hit
Role Model, "Sally, When the Wine Runs Out"
No comments:
Post a Comment