Wednesday, May 6, 2020


Every night before going to sleep I have always walked through the house and turned off all the lights, made sure the alarm was set, and then lastly checked on all the kids.  I always start with the older girls' room because it is the first one in the hallway, then I go to our oldest son's, followed by baby brother, and until 103 days ago, Sonzee.  I do the same thing in each of the older kids' rooms, open the door and make sure they are tucked in, give them a kiss, turn on the fan if it feels hot, whisper "love you", and walk out.  For Sonzee I would walk over to her and feel under to check if there were any feeding, diaper, or tube leaks in general.  I would check her port and make sure the needle hadn't dislodged, double-check her TPN and Lipid pumps, make sure she had enough fluids in her feeding bag to ensure it would last until the morning, cover her in a blanket, make sure she had mermie, push her hair out of her face, give her a lengthy kiss and whisper I loved her and I understood if she had to leave us in the middle of the night, then I would close the sliding doors so there was a space for someone to walk in.

102 days ago was the last night I performed this nightly ritual for all 5 of my kids.  For nights 92-101, I slept right by her side and snuggled up next to her and gave her kisses, but there was no walking by her room to peek in and see her or go check on her like I always had.  It has been over 100 days since my body stopped the routine that had been set into place for so many years.  It has honestly been surprising (but yet refreshing) to me that my mind has done me the favor of erasing all of my engrained and what became involuntary routines.  My mind seemed to just know after she passed I didn't need to do certain things anymore so it didn't bombard me with unnecessary reminders or the feeling of panic as if things had been forgotten.  Yet I have noticed over the last few weeks that the protective mechanism has been starting to falter unexpectedly.

At least two times over the last week I have closed my youngest's room door walked into the hallway Sonzee used to share with us, walked by her bedroom doors that are slightly ajar to her room, and turned my head to look inside at her bed.  It has taken me an actual effort to have to remind myself of the reason she is not laying in her bed and the reason why Sam's laptop bag now hangs on her feeding tube pole.  The split-second it takes feels significantly longer.  The pain it causes is like a fresh papercut over an already open wound.  I have found myself walking into her room to readjust the blankets by the head of her bed and make sure the memory bear and her two mermies are situated in the best position.  I guess my brain couldn't protect me forever, but I also think for some reason some routines are just unable to be broken for long.  I take a quick glance around her room and then walk out, but I still find myself saying "love you Sonze, have a good night".

The Mighty Contributor

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