On Tuesday evenings a nurse comes to our house to look after F so that J and I can go out. We mostly go together and sometimes we each go our own way with friends. You know, try to have a social life.
This Tuesday I came home to find her on her chair in her room, wrapped up in her quilt. Eyes closed. Disturbed. Her bed was wet and so the bedding was being changed.
I stepped into the room to help out and the only thing she said was “can I go back to bed?”
Every night around this time we get her out of bed to take her to the bathroom. Due to Bartters Syndrome she pees so much that, even with super absorbent night pants, we can’t keep her clothes or bed dry without this nightly trip out of bed (and sometimes not even then).
I often wonder what it is like for her, to never be able to sleep through the night undisturbed. Never.
I think I got a bit of an answer when I saw her there on the chair, eyes closed.
April 3, 2014 at 6:14 pm
Oh this made me cry. I know I would do anything for even 4 hours straight of sleep but to picture F all bundled in her little chair just made me sob. Oh my. Hugs to her and to you.
April 3, 2014 at 11:01 pm
It made me cry too. I often think of you and all those who have broken nights for decades and I don’t know how you do it. My heart breaks for you