I’m burned out. I’m making stupid mistakes, like leaving food out on the counter overnight to spoil (at least three times now). I didn’t realize until the night before my dentist appointment that David had school at the same time and we had no one to watch Jack. I frantically texted everyone I knew within a reasonable distance to babysit (thankfully our upstairs neighbor came to the rescue!). Then on the way home from said dentist appointment, I ordered delivery food before being reminded that the same neighbor had signed up to cook dinner for us that night! Luckily, I was able to cancel the delivery. Not to mention I was decidedly upset when I ran out of Starbucks gift card funds this week. David pointed out that I can use my debit card, and he is right. But for some reason it was just another THING that set me off.

Most of the changes aren’t hard. I mean, catheter maintenance and blood draws are pretty easy. Meds take like 5 minutes to administer. Dressing changes suck, but are only once a week (and the hard part is done by David – I just focus on trying to keep Jack distracted with conversation as much as possible). We are taking turns with cancer clinic visits. Hell, Jack is even going to bed early most nights!

This should all be manageable but for some reason, it’s not; I’m scattered. I teared up last night when Jack told me he’s full of bravery and could share some with me for my own doctor appointments – he said it wouldn’t take from his level of bravery at all. The sweetness kills me.

His little face has ballooned with all of the eating he’s been doing thanks to the steroids. It’s really hard to see him changing so drastically and so quickly. The extra weight only serves to highlight the dark circles around his eyes and make them look more sunken. Combined with the lack of energy, the bouts of crying over things like having to drink water (it was seriously upsetting him – “my life is miserable!”), and the fact that his eyelids flutter the moment his head hits his pillow as early as 6pm…god, it hurts.

Meanwhile I am trying to get back into the swing of things at work and I have a ton of well-meaning (yet distracting) people stopping by my desk throughout the day. They all ask how Jack is doing or how I’m doing. They ask questions about treatment and about what’s next. Over and over. It’s hard enough to get work done in my current state without the interruptions. It feels like the life is being sucked out of me with every interaction.

I know with this post I’m kind of throwing myself a pity party. I don’t write it out to get sympathy or attention, though – I really just want to get it all out somewhere and see if anyone has suggestions on how to handle all of this better…I haven’t yet located a support group in San Francisco…


And for something a little lighter – check out my new site design! Princess Jenn took pity on me and cleaned the space up so it’s much calmer and runs a lot faster. She is fucking amazing and seriously saved me from having a breakdown. You guys should hire her.

9 thoughts on “Scattered”

  1. (hugs) I think a little scatteredness is allowed for you right now. (And, also? I do all those things you mentioned with the food-left-out, forgetting-schedules and such on a normal basis:) Love you)

  2. Oh (((hugs))). First of all, the site feels wonderfully clean. Second of all, I’m crying here about Jack giving you some bravery. What an awesome kid you’ve got. He’s so smart and obviously wise beyond his years. I think, in my opinion, you’ve come out of the new diagnosis fog and have hit a wall of exhaustion and grief. Grief for the happy childhood year(s) that will now be happy, but different, for Jack. I think that’s likely normal, but I don’t know. Just know I’m a call, text or IM away. Or hell, let’s get on Skype one night 🙂 Love you to pieces. Wish I lived closer and not clear across the country.

  3. It’s perfectly understandable that your thoughts would be scattered. You’ve got a lot taking up your attention. Don’t ever feel bad about writing about these frustrations, that’s what your blog is for.

  4. love the new site design. it is so pretty. almost like a scrap book.
    hate that you are having to go through this.
    and just wanna say you can throw yourself a pity party anytime you want. blogs are all about the good the bad and the ugly and everything in between. I enjoy reading and journeying along. thanks for sharing your life with us..

  5. Scattered is completely normal. Your life is not in the realm of your old normal, so there are so many changes in every aspect of it. When my son was diagnosed with his heart condition I could barely accomplish anything beyond the very bare essentials. My brain could not engage beyond what it absolutely had to.

    Give yourself a lot of slack and let people help you. It helps, even when it is hard to do so.

    Thinking of you and your brave family!

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