It is 4.18am and Lily is FINALLY asleep. Up until 4.17am, no one in this household had slept a wink. I believe Lily had a manic episode. She came back home around 6.30pm last night. And was in a nutsy mood. Maureen, her therapist, had a challenging time with her. I had a challenging time with her. I did everything a parent would do, and more, to help calm my child. Maureen and I swung Lily in a blanket before she left for the evening. I piled pillows on Lily and laid on top of her (three times I did this) in an attempt to soothe her nerves. Joint compression, massage, singing, endless singing, playing soothing music, melatonin, spritzing lavender essential oil on her crib, bringing her into my bed, putting her back in her crib, watching a movie, giving her another bottle, changing another diaper. Nothing worked. And I could tell that all we needed was time. Time for her to exhaust herself to pass out and fall asleep.
Now she’s asleep. And I’m wide awake. Go figure.
But I’m now doing what I do best – research. And I came across a few new Rett sites (see the sidebar), and have found another mommy blogger of Rett; I googled ‘Rett Syndrome and mania’ and came across this post.
And then of course, I read through her other posts. And it scared the shit out of me. Her daughter has a really severe manifestation of Rett. And after a night like tonight, I’m just not able to shake the worry about what the future holds for my sweetie.
Send us prayers. We need them.
C and L
Count on my prayers! Sending you lots of love and hugs,
I may not communicate it as often as I should, but I read every compelling word you write and rarely go a day without directing my thoughts to you and Lili. That goes for me and a whole bunch of other people, I’m sure. Just keep reaching out. Richard
Prayers and sleep! Lots of sleep
Sent from my iPhone
Come for a respite when you can!!!! xooxoxoxoxoxoxoxoxo