Saturday, January 15, 2011

“What is important in life is life, and not the result of life.”

I brought Baby to the Urgent Care center (then ER, then CHOC) on Saturday, Jan 1, because she was being lethargic. I had big plans for Sunday. It was #1's 12th birthday, and she asked for Mimi's for breakfast. I had a 9 mile run to get in before that. I didn't have time to be slowed down by a sleepy kid. I figured, worst case scenario, she needed to be iv'ed and rehydrated. 2 weeks later, here we are. #1's birthday has come and gone. We saw her for a few minutes in the oncology ICU while we were between doctors and nurses. We didn't have breakfast that day, at all. She did - I hear she ate cake or ice cream or something. We had some ice cream cake, and gave half of the cake to the OICU nurses. 

I was really worried that she might need some type of medicine, or god forbid, a shot. She hates those. Thursday, I was psyched that her morning meds are down to 4, and evening 3. That doesn't include the twice monthly lumbar punctures. At least she has a port in her chest, so she only gets a needle stuck in her chest once a week or so. 

Before I brought her in, she'd been kind of getting over a cold. Not really "getting over", because as we now know, her immune system wasn't functioning. But we'd been letting her sleep in our bed, because she didn't want to sleep in hers. It annoys me to have her in my bed. I don't like it. I've been sleeping in her bed for 15 days. 

Baby's steroid makes her cranky. She's in general pretty bull-headed, and feisty. But this is so much worse. She caught Snork grabbing a French fry (that she wasn't even eating), and about melted down. She told her sister she can't watch tv in her room. It's  frustrating, because I don't really know what to do. I mean, I'm generally a pretty consistent disciplinarian, but... How do you discipline a kid on a drug that makes her act unreasonable? Then, Screechy moved in next door, and it was so much clearer. I was doing fine. 

I constantly am irritated by my kids' hair. #1 has super long, beautiful caramel colored curls, but she wears them tied up in an ugly bun, all the time. #2's hair is stick straight, and thick, and full of natural blonde highlights. She alternately hates brushing it, or styles it in a messy pony tail with tendrils hanging haphazardly-on-purpose. Baby's hair is fine, and never, ever stays in anything I use to get it put up. Today, I brushed it to put it in a ponytail for her, and had to clean a small handful of hair out of her brush. I guess it's starting. 

15 days ago, my biggest concern was if I'd have to maybe start taking an extended lunch once a week to fit in my 5 mile weekday runs, for the Princess Half training. I was usually dropping Baby off at school around 7:45, but could bring her as early as 7, which would give me some time to fit that 5 miles in.  It crossed my mind that I felt a little bad for making her get up earlier, making her day that much longer. I was really concerned about not having enough time on my plate to cover training, work, kids, home. I had a goal time in mind, and needed those runs to hit it. Needed. 

I was trying to figure out in our budget where we would fit in the trips we wanted to take this year. We planned on a few weeks in Florida (including a trip to Disney World) and some time in Yosemite over the summer. It was all doable, as long as I booked our travel smart. I spent a couple hours on Wednesday filling out approximately 47,000,000 forms for a variety of charities, aid organizations, and pediatric cancer organizations, and paid family leave. We'll be on one income, and our bills don't really allow that. We are firmly, firmly in the red with The H not working. 

Perspective, I guess. 


  1. I wish you never had to find this perspective :( You have so much to do and worry about and think about and plan for and I wish I could help you with something.

    You and Baby (as well as #1 and #2 and The H) are on my heart and in my prayers. I'm sending strength and courage vibes Baby's way. And, of course, sending along some 'move Screecher to a different room' energy, too ;)

  2. its crazy how things can change in just a blink of an eye. I am praying for you and your baby. Patience, healing, rest, etc.

  3. WOW!!! Girl, I am so sorry for all that you are going through. You are in my prayers! I wish I lived close so I could bring you dinner and clean your house or something! Oh, I hope you get to go to Disney World so so is your favorite!

  4. Man. It sucks beyond all belief that all this is going on. I don't know what to say other than "I'm sorry."


  5. Oh man, I can't even imagine! You sure seem to be holding it together pretty darn well. I don't even know how I would do if I were in your shoes. From here I think you're doing a fantastic job as the mommy ... way better than the parents of the pizza throwing screecher! ;)

  6. UG...this perspective stinks! I think about you every day and like Hungry Runner Girl I wish I could feed you or something.


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