Coming home from the hospital was fine. Charlie rocked the new medication, or so the staff at Sick Kids told us, and our time there was actually really boring. It made me realize how much adrenaline I was running on for that week back in August. I felt constantly being back then - this time, it felt like a lot of hurry up and wait. So, upon discharge, we were very happy to leave the hospital behind, even for just a few days. They told us on Sunday that this week might be the week we got the OK to only come once every two weeks instead of once every week, so we had that to look forward to.
I'm feeling pretty sorry for myself tonight. It's a combination of things: I'm overtired (5 hours of sleep last night combined with no nap today makes Kristina an unhappy girl), I'm a bit panicked that we don't go back to the hospital for 16 days, Charlie isn't eating well these days, Dr. D.'s tone made me think Charlie isn't doing as well as we think he is, Charlie goes for another echo on Nov. 4th (the next appointment date), and I have a generally bad feeling at the moment. Let's go through these, one by one.
1. I'm overtired. Must take more naps? Solution: No solution for this one, and am thus not going to whine about it.
2. We don't go back to the hospital for 16 days: This is the least of my issues. We have a nurse visit once a week, so there'll be two of those before heading back to Sick Kids. Solution: Not going is a good thing, because he is stable.
3. Charlie isn't eating well these days: this kid drives me nuts sometimes. He isn't eating very much right now, although he is eating a bit more cereal. I wonder if it's that he's figured out that he gets full (somehow) even if he doesn't eat much, or does he not feel well right now? He seems fine, behaviour-wise. He goes through fits and starts, and right now we're in a fit. Solution: No solution here, either, other then patience.
4. Dr. D.'s tone: like I said in my previous entry, her strong suit is not compassion. Her words said "How's he eating? Not well. OK." Her tone said "He's not eating well? That's a sign that things aren't right. Let's keep an eye on this." Now, Judith (NP) said not to worry about it, that it's really good he's taking even some, and that it's really good he's having cereal now. Trust the highly educated doctor or the nurse that sees Charlie all the time? Tone misread? Not even there? I should have said something. Solution: Will call tomorrow to discuss with Judith or Kristen.
5. The echo: I am worried about this echo because no one has told me not to worry about it. The first one was scheduled so far in advance, and they told us right away not to expect anything at that one. I am so worried that this one should show some improvement but won't. All of my hope from the magic '17' number from before is gone. Solution: wait and see, I guess.
6. My bad feeling: I don't know if this is separate from all of these things or a combination factor from all of them. I just have a bad feeling about things right now. In the past I didn't trust my mother's instinct, and now that I always do I don't want to, because it is telling me that something is wrong. That things aren't going as well as I thought they were. That a transplant is not only likely but inevitable. That I'll only have 15 or 20 years with my boy. Solution: Fuck, wait and see. Again.
This didn't really make me feel better. There is a lot of wait and see 'solutions', which aren't solutions at all. Never before have I wished for a time machine, just a glimpse into the future to see if Charlie will be all right, or not. I know I should stay positive, that I should think of only good things and butterflies and rainbows, but it's impossible. I often think of the worst. For tonight, I think all I can hope is that tomorrow is a better day.
Everybody Hurts - REM
When the day is long and the night, the night is yours alone,
When you're sure you've had enough of this life, well hang on
Don't let yourself go, 'cause everybody cries and everybody hurts sometimes
Sometimes everything is wrong. Now it's time to sing along
When your day is night alone, (hold on, hold on)
If you feel like letting go, (hold on)
When you think you've had too much of this life, well hang on
'Cause everybody hurts. Take comfort in your friends
Everybody hurts. Don't throw your hand. Oh, no. Don't throw your hand
If you feel like you're alone, no, no, no, you are not alone
If you're on your own in this life, the days and nights are long,
When you think you've had too much of this life to hang on
Well, everybody hurts sometimes,
Everybody cries. And everybody hurts sometimes
And everybody hurts sometimes. So, hold on, hold on
Hold on, hold on, hold on, hold on, hold on, hold on
Everybody hurts. You are not alone
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