Today was another decent day.
I mean, I guess it was decent from the standpoint that Hannah’s agitation and pain was minimal. Hardly decent because she can’t see me, can’t interact with me, and just is asleep all day and night long.
Is this what her life has come down to? Brief moments, 90 minutes total today, of non-agitated awake time within a 24-hour period. I am so, so grateful that we have finally been able to get her comfortable with the meds.
But when she is awake for those 90 minutes or so, I treat her as if she can still see, still hear me, and still interact. I talk to her a lot, sing to her, and I even still say stuff like “Baby, wait one second, I am going to get you a new diaper.” Yes, I actually stopped after I said that and thought about it.
Some habits are hard to break. My head knows what is going on — my heart still holds out hope that one day she is going to snap out of it and have even just a few moments of coherence and interaction. I keep thinking that if I keep talking to her as if she can still interact then maybe her brain will keep trying to interact and one day give me a knowing smile.
It is also my way of keeping a connection with her, I think. She has always been nonverbal (yet so expressively communicative), but now she is noninteractive too. My brain plays tricks on me thinking that she is not as ill as she is, that she can still hear me and will smile or make one of her adorable faces. I keep up the singing and talking, hoping that moment will be the one.
Then my heart aches when I realize I will not see it nor likely I will ever see it again. I haven’t seen that smile in a couple of weeks now.
Am I really never going to get another smile from her again? Never another moment of mutual gaze and love that we have done day in and day out for three years?
That just can’t be true, can it?
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