Anticipation
Let’s talk about anticipatory
grief. To be honest, I had never heard of it before. It refers to the mourning
of a loss you will soon face. I have found myself swallowed whole by the beast
that is grief. How can I be experiencing these feelings and intense emotions if
she’s still here with us? Anticipating the loss of a child is something
that I don’t wish upon anyone. I find myself questioning every single
sound, move, or lack thereof when it comes to Bridget. The constant observing,
analyzing, and tracking of her losses is about enough to send me into a tail
spin. We’re always asking, “When was the
last time she…” or “Have you heard her ______ lately?”
There are good days, and then there are the lowest of the low bad days. I was asked recently what I meant by “bad days”. In this picture-perfect, photo-shopped world that we’re living in only the best images and videos are displayed. I’m guilty of portraying a rosy little life with my family too. It wasn’t until I decided to become transparent and share a video of Bridget on Snapchat that I realized how little I actually shared about what REALLY goes on behind closed doors.
Lately Bridget has begun to display what is called Sundowners. Typically, older folks with Alzheimer’s display the same behaviors. They’re triggered by nightfall and can cause anxiety, pacing, hours of crying with no consolation, and even confusion. In the particular video that I shared of Bridget she was seen running, pacing, confused and crying over the course of about 12 hours. Up until recently we had no tools in our toolbox to console her. Praise the LORD that one of her doctors prescribed something for extreme anxiety and that has assisted (and I say that lightly) on those troubling days, which unfortunately are becoming more frequent.
Just the other night we had another tough evening. We had a professional development day so her schedule was totally off as she was at daycare all day, her meds got mixed up with the change too, so by the time I picked her up at 4 she was manic. Cue the extreme anxiety. I felt as though I was Noah from The Notebook, willing Bridget to just stay with me for a moment longer. But for the first crushing time, I had a feeling that she didn’t recognize me: she wouldn’t respond to me and she also wouldn’t say my name. The confusion set in, and my child was lost in her own mind.
The spells are happening more frequently now. And that’s when I get that familiar tap on my shoulder from grief, reminding me of the darkness that is to come. How much longer will she be able to speak? What is she thinking that she isn’t able to convey to us? Is she in pain? How many more times will I get to hear her say “mommy”? That sick anticipation churns and grows like a weed in the pit of my stomach. Sanfilippo Syndrome...I loathe you.
There are good days, and then there are the lowest of the low bad days. I was asked recently what I meant by “bad days”. In this picture-perfect, photo-shopped world that we’re living in only the best images and videos are displayed. I’m guilty of portraying a rosy little life with my family too. It wasn’t until I decided to become transparent and share a video of Bridget on Snapchat that I realized how little I actually shared about what REALLY goes on behind closed doors.
Lately Bridget has begun to display what is called Sundowners. Typically, older folks with Alzheimer’s display the same behaviors. They’re triggered by nightfall and can cause anxiety, pacing, hours of crying with no consolation, and even confusion. In the particular video that I shared of Bridget she was seen running, pacing, confused and crying over the course of about 12 hours. Up until recently we had no tools in our toolbox to console her. Praise the LORD that one of her doctors prescribed something for extreme anxiety and that has assisted (and I say that lightly) on those troubling days, which unfortunately are becoming more frequent.
Just the other night we had another tough evening. We had a professional development day so her schedule was totally off as she was at daycare all day, her meds got mixed up with the change too, so by the time I picked her up at 4 she was manic. Cue the extreme anxiety. I felt as though I was Noah from The Notebook, willing Bridget to just stay with me for a moment longer. But for the first crushing time, I had a feeling that she didn’t recognize me: she wouldn’t respond to me and she also wouldn’t say my name. The confusion set in, and my child was lost in her own mind.
The spells are happening more frequently now. And that’s when I get that familiar tap on my shoulder from grief, reminding me of the darkness that is to come. How much longer will she be able to speak? What is she thinking that she isn’t able to convey to us? Is she in pain? How many more times will I get to hear her say “mommy”? That sick anticipation churns and grows like a weed in the pit of my stomach. Sanfilippo Syndrome...I loathe you.
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