Tuesday, August 27, 2013

yo-yo #95 james's pocket rocket

when i think back to the last post i made on this blog, i remember feeling very upbeat, very positive. for one, i was a teacher basking in the glory of winter break. i was also in the waning hours of a very, very long stretch with just one fixed axle yo-yo. it was new year's eve, which represents the epitome of hopefulness. and, just a week previously, we had told our two kids that we would be having another little baby.

we told them on december 23, having placed little baby-bottles and rattles and stuff into a blank stocking hanging from the mantle. we let them find it, let them take it down and draw their own conclusions. it was adorable. i got the whole thing on tape. i cannot watch it.

in mid-february, it became clear that the baby was a boy and that he had a genetic condition called trisomy 18. just like with down's syndrome, this meant his cells had an extra copy of a chromosome. however, the prognosis of this particular condition is met with... more predictably grave outcomes. really it meant that our baby was highly unlikely to live very long, if he survived to be born at all.

the night we found out what was really going on, we realized we had to name him, and decided on james logan haponik at the dinner table. we liked the middle name 'logan', and its connections to a mutant with special healing powers seemed somehow appropriate (if a bit ironic). it truly broke my heart to hear that stacy would have loved to name him for her father, michael, (as our first son, edward alexander is named for mine), but that she couldn't 'take' the name from either of her brothers, who may have kids themselves someday. i met stacy in high school, and she is my one and only love. but i'm absolutely certain that i could find no person of better quality or character had i searched a hundred years. if you get married, make sure you're able to say that to yourself honestly. you'll find it's worth it when the shit hits the fan or when the chromosomes are too numerous.

we aren't religious people at all, but terminating the pregnancy never really seemed like a viable (or moral) option to either of us. i think it's different for every parent and every pregnancy, but we were definitely going to see this one through to whatever end. it was interesting to find that some acquaintances were surprised that we would carry a baby like this to term, despite our lack of commitment to an organized religion. there were definitely days when it would have felt easier, but something would have broken irreparably within us.

one of the toughest components to all of this was considering how aggressively to try to "intervene" medically after james was born. i learned that you can keep a person of any age alive for a very, very long time, even if their body has no ability or apparent intention of keeping its life up independently. the prospect of watching an infant suffer continuously while hooked up to various life-sustaining machinery seemed selfish to us both, as though our own feelings self-worth, joy, and our reluctance to let go were more important than the life experience of a baby who has no idea why he suffers. i do not for a second claim that it is universally the right choice for anyone/everyone, but to me a brief life in the arms of loved ones seemed preferable to a prolonged one lying on a table, connected to tubes with no prospect of getting better. if and when i get really sick and am not going to able able to survive off of life support, i want to spend my last my last days/hours embraced by my loved ones. why would i choose something else for my child? there have been moments of doubt, but i think we made the best choice we could have.

the next few months were surreal, and without question the hardest of my life. it wasn't all horrible, mind you. there was still happiness. but it was as though the melody of my family's laughter and joy was played over a pedal-harmony of pain and confusion. stacy and i had become accustomed to walking through the baby section at target shooting secretive glances at each other. now we pretty much felt like giving the entire section the finger. stacy couldn't even really shop for the baby, because she didn't think she'd be able to take returning nursery items which would prove unnecessary.

caitlyn reads us very well, and there would be no way for us to have hidden our confusion, anger, sadness, exhaustion, or any of the feelings which arose out of this experience. she understood what was going on, though i doubt she understood 'why'. none of us did. alex is 5, and he was made aware that the baby was very sick, and that he might or might not get to meet him after all. there is nothing like reading the disappointment on your 5 year-old son's face when you tell him that he probably won't actually get to bike or play catch with his baby brother.

on june 21, we checked into the hospital. since stacy is a doctor, everyone was very much aware of the situation. they were very kind and gave us all the privacy possible. actually, they had us in the most far-removed room in the maternity ward. however, the shower ended up leaking into the hall, necessitating a room switch just a few hours before delivery. the kids stayed the night at my in-laws' a few miles away. everyone was ready to mobilize at a moment's notice. this is often the case with imminent baby arrivals, but even more so when the situation is medically tenuous. my mom and dad came in the night before (evidently i had miscommunicated the induction date - nice job, me), so they went to see the new superman movie. the next morning, they came back in to see us, and were halfway through describing just how awful they found the film when stacy [very] suddenly felt that james's arrival was imminent.

the next few minutes were a blur. james was born, and immediately he looked very, very sick. he had a faint heartbeat, but no color and wasn't breathing. we thought we had seconds, and our desperation was extreme. miraculously, the nurses were able to convince him to breathe. he never really 'cried', but made soft whimpering sounds which i know i will echo in my mind forever. they immediately gave him to stacy, and i swear within a minute of doing so, he had gone from ash-gray to bright pink. i let myself hope for a little time.

after a few minutes of cuddling and laughing, we got in touch with the family, and they started arriving in the room. i remember feeling happy and proud as i invited my parents into the room, and was momentarily confused by their apparent trepidation as they entered. babies with this condition tend to have about every problem imaginable, and virtually none of them can be rectified within the first days of life, much less hours. knowing that we were not aggressively trying to keep james alive (meaning not hooking him up to a ventilator), most of the doctors and nurses were superfluous at this point, and all but a particularly saintly nurse named Laura left to give us our space. we needed it, as the room quickly became crowded with my family and stacy's. the kids arrived, and alex and caitie were able to meet their little brother.

alex was very hesitant. among his less obvious issues, james was born with a cleft palate, so he looked a little different than your typical baby. he was also TINY at 3 lb, 12 oz. alex had to be convinced to touch his baby brother at first, but after he got used to it, he loved sitting on the bed with stacy and having James hold his finger. the moment caitie entered the room, her eyes met stacy's, and both of them started crying. both of their tears seemed to communicate that which could not be expressed rationally; stacy's conveyed how sorry she was that this all happened while caitie's tried impossibly to say "it's ok." she held her baby brother and sat with stacy and was generally stronger than any 10 year-old should ever have to be.

we were visited by a professional photographer whom we had arranged through a charity called "now i lay me down to sleep". they organize a network of photographers who come to hospitals and homes to take "remembrance portraits" of terminally ill kids. they give all of the digital copies to the parents; no fees and no watermarks. it is pretty much the most admirable charity i can imagine, so if you're tired of sending money to amnesty or greenpeace, y'know...

over the next 5 hours, james gradually deteriorated. his breathing became punctuated by occasional (and alarming) apneic spells, and we knew that we were losing him. stacy and caitie cradled james, and i held my son's tiny hand as he stopped breathing altogether. i was amazed by how long it took. true to his namesake, james logan's heart continued to pump dutifully, even though deprived of oxygen. later i learned that this has to do with babies' hemoglobin-rich blood, but the idea of  wolverine powers felt better at the time.

from february on, we knew that james would die. we were getting ready for it, but i will not say that we were prepared. for one, we had no idea how the kids would react or the best way to help them grieve. from the beginning, we have tried to be as open with them as we feel they are able to handle, and i think they are finding their way through their feelings appropriately. so far, i think that alex has handled it all with more clarity and grace than any of us. yesterday as we filled out his kindergarten forms, there was a getting-to-know-you questionnaire which asked him "do you have any brothers or sisters?" without hesitation, he answered "i have a sister who is 10, and a brother who is in heaven," adding "i was going to say 'a brother who is dead', but saying he is in heaven sounds nicer."

i resigned from my teaching job. i would have taken time off if james had been born healthy. knowing that he would not be, it seemed that my attentions would still be best directed toward home. two days after he died, and immediately after returning from meeting with the funeral home director, i received a call offering me another open position at the school. it was polite, and not intended to come off as "so now that it's clear you'll be free next year..." but it was hard to hear.

i never got to give james this yo-yo. i had it in my pocket throughout the entirety of his life. i knew he would be miniscule, even for an infant. i have given alex and caitlyn many yo-yo's, and will hopefully have time to give them many more (whether they want them or not). with james though, i didn't have time to give him very much at all. and though i intended this for him, at the time it really didn't seem all that important. honestly, small though it is, it would have been way too big for him anyway (i don't own a mighty flea). among the gifts we did give james were a small stuffed lamb, which caitie now keeps on her bed, a plush dog-blanket named spot which alex keeps watch over, and a few cute outfits he got to try on which stacy has in a box. me, i'm keeping this yo-yo safe for him. it reminds me that we would have had a lot of fun together if things had been a little different. it also reminds me that though i didn't have time to give him this little present, i did have time to hold him, to hear him, to see him meet his family, and to say goodbye. i did have time, and i am so inexpressibly grateful.

i'm sorry. i know this is a yo-yo blog. you didn't come here expecting to read this epic saga. and i know i spend most of my ramblings here saying stuff like "don't get attached to anything!" or "everything is transient and impermanent!" or "ding up your yo-yo's, weenie!" i think the thoughts i've tried to express in this blog have helped me to crystalize what i think and feel about the world, all of which has been tested over the past 6 months. i've found that some of my understanding has been broken, some of it has been reforged, and some of it has stood firm. this experience represents the predominant emotional landscape of my life this year. where before, i have primarily thrown a yo-yo to experience reality more clearly or directly, often this turmoil has left me wanting to throw in order to hide, ignore, and forget.

this yo-yo, however, i will only ever throw to remember.

1 comment:

MrYoyothrower said...

Thank you for sharing. I can't imagine how hard this is for you, but if sharing it here helps then talk all you need to.