When we saw the pdoc last Monday, he added a smidge to Sissy's lamictal and told us to stagger when she doses it 50/50 morning/evening. Since this is the week we anticipated her rage, and she has yet to launch the typical diatribe, I think this is a good med mix.
Could it be? After nearly five years of juggling meds, have we finally worked out a cocktail that is keeping Sissy stable? Of course you know, I'm holding my breath and am jumpy, edgy, anxious. I'm so used to the highs and lows, the moodiness followed by rage, the rare pleasant moments that it is really hard to hope that we have made progress finally. And just as Sissy is entering puberty, that is to say, it might be a good med mix for today but toss in estrogen spikes every four weeks and it's anybody's guess.
In other words, Sissy is doing really well and it scares me just as much as it amazes me.
Last night just she and I were in the pool (that is now only 2 feet deep because water keeps pouring over the listing side). We bobbed and talked and giggled and then WHAM, it hit me this is one of those mother/daughter moments I've always dreamed about having with Sissy and I'm having it. RIGHT NOW! Amazing.
This morning she let me do her hair up in a pretty style. She didn't rage. She didn't scream. She didn't mutter that she hated it. She looked in the mirror, asked for one minor adjustment and then left it alone! WHAT!? I made her hair pretty and she didn't RADify it?!? Amazing.
Then as I dropped her off at camp, one of the little girls came up and hugged me. "I guess you're one of Sissy's friends?" I said to her.
She giggled and said, "Yup!"
Sissy has made a friend?!? And this child is friending her back, happily?!? Amazing.
Sissy didn't bad mouth me to this child so this child thought I was safe to hug?!? AMAZING.
amazing, amazing, amazing.
Still, I'm holding my breath. I'm not going to breathe until Sissy makes it through a rage cycle without raging. Then I'll begin to accept that this is possible, that Sissy can actually be working toward healing. That we are on the road to progress. I wonder if this is how Mommy's feel when the doctors tell them their child's cancer is in remission?
Ya'll, no matter what happens with Sissy's progress, this has been a horrible, long, exhausting, difficult, heartbreaking, miserable, life-changing two years of crisis with Sissy. It's going to take us all a long time to recover, for the last ebbs of PTSD to fade away, for our family to settle into what just might be a new norm. But there is hope. Really, there is.
4 comments:
This is indeed the way i felt while my daughter was in remission. Hard to adjust to at first and kicking myself for not going with the flow, and kind of waiting for things to turn bad again. then things evened out and amazingly i had some time for myself and just when I have accepted this is a wonderful place to be in life, my daughter falls out of remission and passes flat out in public from blood pressure swings a day later. I have fallen into a depression but here we go ready or not. Will find out early next week if we are doing chemo again.
Enjoy these days... Even if a rage returns, Sissy is showing that growth is possible. Hang on to your first mother/daughter moment.
peacechaser - prayers go out to you and your family. oh my, oh my, oh my. may god's grace adn mercy be your closest friends.
Hey there, I'm so glad that Sissy is doing better and that you two had that mother-daughter moment you've dreamed of! I hope and pray that she continues to progress and, not that it matters what I think lol, but I like the way you handle the meds issue! Lori
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