Not much to report, which is great! We went to clinic this past Monday to start the second half of delayed intensification, but Elsa’s counts were way too low (ANC 400), so we got to go home and take the week off (she needs to be 750 to get chemo). While I, initially, felt a twinge of disappointment that we would not be getting this next phase underway, I mostly feel relief that Elsa’s body gets another week to rest before the onslaught.
She is so clearly renewed and rejuvenated. For the past few months, part of me had shamefully started to believe that, perhaps, John and I had given birth to a rotten egg. That’s an awful thing for a mother to think, I know. [I think moms need to think awful thoughts sometimes, say them out loud to a room full of people, and then let themselves off the hook.] It’s hard for me to step back sometimes (probably because we are attached to one another 24/7) and see that, of course, she is irritable because of treatment. I get mired down with this conviction that she has some sort of inborn error in her personality. She has been so incredibly irritable and clingy for the past few months; I had forgotten who my child really is.
It has been nearly three weeks since her last chemo and I am in absolute awe of the child who has returned to our house. She is delightful! We have a delightful child! She goes to bed at a semi-reasonable hour (albeit with an hours worth of fanfare). She sleeps [almost] through the night. She wakes up and doesn’t immediately start screaming. I had started to think that immediate hysteria, upon waking, was just a normal part of being a kid. Turns out that kids who feel good? Yeah, apparently they don’t need to always wake up screaming. Also, for months now, she has been totally incapable of amusing herself for even 60 seconds. She needs to be CONSTANTLY engaged with someone (usually me) and whines incessantly if left to her own devices.
The other night, John and I sat in the living room for an hour while Elsa toddled around the house, playing with her various toys, occasionally bringing them to us and shoving them in our face for us to “eat.” She was happy to just play. No screaming for “na na” (nursing), no whining while clinging to my legs, no wild demands for a schmorgesbord of salty snacks. We were just hanging out together, as a family. The adults doing their own thing, mama feeling free and disentangled, the baby doing her own thing, and the occasional happy collisions of family members: John and I chatting. Me eating Elsa’s play food. John tickling her belly. I said to John, “I think this is what it is supposed to be like to have a kid . . .” and we both just sat, stunned.
I have a problem with my inner monologue (hence, the need for writing). My inner monologue is repetitious – I think John, with all his psychiatric wisdom, would say I am very perseverative. I have phrases that run through my head all day (and night) – they are particularly intense when I’m driving. Many of them are directed at Elsa and one, in particular is, “My god. What have they done to you?” These past few days, I’ve felt this phrase so acutely as she blossoms into a happy little girl. My god. What have they done to you? How could we have lost you for so long, that I had started to believe that you never existed?
All that and I could have just said, “We are having a great week!” and then showed you a Friday Photo mix!
Hi Georgia – good luck today! My email is bergenbags@gmail.com
we can get a discussion of treatment going there…..the second 1/2 of DI was a BREEZE compared to the first 1/2 – so chin up!
Gillian
Forthrightness is a term coined to describe the action of moving forward into rightness. The energy of this honesty will move your life in a positive, healing direction. Thanks for reminding me to be more direct and honest with myself and others. Your truthfulness will keep you therefore your family healthy. I love you, Susan
Thanks Susan! It is interesting that you found forthrightness and honesty in my writing, because it is something I actually struggle with as a person. Working on being more direct and honest in person and not just on paper
Love you too.
‘ [I think moms need to think awful thoughts sometimes, say them out loud to a room full of people, and then let themselves off the hook.] ‘
YES.
You know, you are so good at this writing thing that even though our parenting paths took an awful fork away from each other, you still write about the things in my brain and experience. That, I’m pretty sure, is writing at its best.
I hope these days feel a little bit longer than the hard ones somehow, that you all get to linger in them before the next round of DI starts.
XOXOXO!
I like that we write the things in each other’s brains – you certainly do for me all the time. Glad we have our writing romance (Is calling it a romance creepy? Will I ever stop feel self-conscious that I am being creepy?).
These pictures are amazing! And the words even better.
Thanks Amanda! It’s so nice to get positive feedback – especially when I am wracked with terror every time I press “publish” that I have just written something awful and trite.
Love, love, LOVE this post!!
It makes me want to scream ‘go kairos!!’ and also go dig up my own blog entries where I said the SAME thing!!
You forget it’s not normal for your child to be sick. You take responsibility for the whole thing. You accept this hell that’s been shoved into your lap when you thought you’d recurve the life everyone else got a chance to have. Then the fog clears and you get a glimpse of YOUR child being HER. And you think, ‘aw screw them. I don’t want their life as long as I get to have her.’
This is what I meant when I said it gets better. Girl as long as chemo and roids are involved it won’t be great. LOL But it gets better here and there and you will recognize the good against the backdrop of ‘downright shitty’ I guarantee that much.
Hoping for a few more great days for y’all before the rest of sweeps in. You deserve it as does Elsa.
Two things:
1. That’s ‘receive’ and not ‘recurve’ (really iPhone? Really?? O_o)
2. I told you I wrote virtually the the same post. LOL
http://www.caringbridge.org/visit/emmagracebrown/journal/62
Our ‘reinduction’ is the same as DI. Emma was delayed in starting the second half due to low counts. And thank God because we needed that break. :-/
Love it! Thanks for sharing a little glimpse from the past (especially in the context of seeing Emma Grace so healthy now)!