Sunday, February 26, 2018
She is okay. I check on her every night just before I go to bed. Every night I take her to the bathroom then tuck her right back in. Tonight I popped back in after a minute just to make sure - and she was okay. I started doing this when things were bad, because if she woke in the middle of the night she would be up for hours, lying in bed, unable to sleep. Most nights now, she falls right back to sleep though.
It's been over a month of health and I am so very grateful. This PANS. Our life is "normal" right now and I have to try hard to remember how bad things can be. Sometimes I do it on purpose. Remember. I WANT to remember. I read old blog entries and Facebook posts. I look at old photos, scanning her faces for that look. Memories bust back in and my heart falls. I want to reach in to those memories and scoop her up and hold her until it is all better. I could give her all the dates! I could tell her exactly when the flare will end and how. I could reassure her that the flare isn't going to be "the one" that pushes her to the other side. The darker side. The side I read about every day, in the words of other mothers who can't say that their baby is okay.
So far, we've been lucky. Yup. Lucky that she "only" had terrorizing fears, debilitating tactile sensory issues, massive mood swings, insomnia, and thoughts that won't give her peace. We are lucky because it could be motor and vocal tics, food refusal to the point of feeding tube, paralyzing fear that imprisons her in this house, and rage that makes her hurt herself or others. Nope. None of that. So we are lucky. Isn't that a kick in the gut. Lucky.
Well, she is okay today and has been since early January. I'm hopeful and growing more confident every week. We'll see. My next entry might be hellish but for now, I'm counting my lucky days.
Strength. Hope. Love.
