at around nine i sat in a steamy bathroom with little jedi. he began sounding congested at dinner and i thought some steam treatment would help him out. after 20 minutes of steam and a quick diaper change i brought him downstairs to be warmed up by daddy. i then headed back upstairs to pump. i chastised myself because it had been 5 hours since my last pump session and i knew that my milk production would suffer if i wasn't pumping often enough. i made a mental promise to myself and jedi that i would pump every two hours the next day and that would surely get us back on track. the day was wrapping up and i wasn't ready for it end. the kids were sleepy- all except frances who just woke up from a two hour nap- from 7-9 pm. i had wanted to say a family rosary with them all cozy in their beds, but they needed to get to sleep and i still had alot to do.
i had wished that i brought jedi upstairs with me, but he needed to be with chris- keeping warm. his temp earlier when the hospice nurse came over was 94 degrees under his armpit. she tried to comfort me by telling me i needed to add a degree. i still didn't feel good about it. i felt like time was rapidly ticking away and i was moving slow as a tortoise. i drew up three 27 mL syringes of milk for his night feeds. i measured, bagged, and labeled the remaining milk and put it in the freezer. it was about 10:30 or 10:45 before i headed back downstairs. i laid his midnight syringe next to chris and sat on the couch to watch whatever chris had on the tv. i complained to chris about how everything takes forever. the pumping, the washing, the measuring, the storing. i whined a desire to simply breastfeed my son. and i was tired.
a little before midnight jedi made a weird noise. his breathing sounded like a "meow". i got up from the couch and was over by chris lifting jedi from his arms. i sat on the ground with him and felt a stabbing in my heart. i knew this was it. i tried to suction jedi. i got alot of mucus up. some of it was pinkish brown. chris and i sat on the couch together with jedi. franky watched us cry and hold him. she began to worry- hugging me and kissing me. chris made her a snack of granola and yogurt. we talked about possibly needing morphine. chris got the hospice notebook out- but we decided against calling anyone in. we didn't see any signs of him being in pain and we didn't want strangers milling about during this time.
i wanted desperately to go upstairs to our room- all of us. before we headed upstairs i took jedi's feeding tube out. the optomistic side of me figured that if it was just congestion i could always replace it before three. there was no way he was going to get his midnight meal- his breathing was too labored. but as the feeding tube came up, it brought a good amount of fluid up with it. i placed my hand on his chest and pressed very slightly, and more fluid came up. his breathing improved immediately- but only for a little while. i looked at his face without the breathing tube- so sweet and innocent. i wanted to take a picture. but every picture was no good- out of focus, bad lighting. his eyes were glittering. he looked at me. my love just poured out all over him. i wanted to take his place.
i held him close and headed upstairs. chris followed, bringing franky. i placed jedi on his sheepskin- propped up because he always breathed better that way. i laid my head next to his, kissing his cheek where the feeding tube used to be taped.
franky crawled up on the bed- on my side farther from jedi. i held her with one arm. chris laid on jedi's right, i lay on his left. chris switched off the lamp. franky was asleep in five minutes. i transplanted her to the bed on the floor and came back to be with jedi and chris. i slipped my hand under his blanket and held his foot. i loved holding his rocker foot as he slept.
i closed my eyes and listened to him breathe. i knew without asking that chris lay awake as well. i could hear gurgling in his throat. it seemed to get closer and closer, rising up and up. his breaths came farther apart. in the dark i began to say the hail mary quietly inside. the redundancy of the last lines of the prayer didn't escape me. chris got up resignedly and turned the lamp on. we talked to him-encouraging him to go- to not be the fighter anymore. we professed our love. we cried. we held our breath. he continued to fight. i became aware that touching and stroking him just stimulated him too much- just kept him tied to the earth and struggling. i knew where he was going and what was awaiting him so reluctantly i pulled my hand away. i didn't want to draw it out for him. there were so many times when we thought he was gone, then he would gasp and breathe with gurgles again. once during a long pause i thought he was gone and i reached out to touch him, he gasped and i cried. i felt so bad for startling him.
after the longest pause, we knew he had left us. i laid next to him and cried. i looked at the clock and it was close to after two. chris asked me if we should get the kids up. i told him to let them sleep. they would have time to mourn in the morning. chris switched off the lamp and went to the bathroom to take a shower. i could hear his sobs from the bedroom. on my back i lay looking at the ceiling and talking to jedi. where before death i wasn't sure he could hear me, now i knew without a doubt that his hearing was perfect. so perfect i didn't need to talk.
i thought- "jedi, do you hear your dad in there? ask God to shower peace down on his soul." and that is how his intercession for our family began and still continues to this day.
st. jedi, pray for us!