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"I want to do it, so I know how... the last time I was just kind of hoping gravity would do its thing and held the tube straight up in the air. I got it in there, but it was messy."
"Oh, shoot. She's leaking. That was my fault. You didn't squirt it in the top hole did you?"
"Gross. No. The side one"
"OK, good. Now screw it in and unclip the tube."
"Ohhh. That's the part I missed. I kept thinking that it didn't seem nearly so difficult when you did it."
"Ahh. Yeah. You forget sometimes that there are a hundred little steps that you don't even think about until you have to explain it all to someone else."
She turns two in a few weeks. By this age, most children are walking alone, talking, becoming mini-versions of their adult selves. But this week just shy of her second birthday, Jackie sat up. She amazes me still.
Each time I sit down to write about Jackie, it always begins with the same sentence "she's her own kind of perfect." That's also where I usually stop writing, my finger hovering over the space bar, because I don't know what to say beyond that. She is broken and by every definition fragile. But still, to me at least, mind-bogglingly perfect.
Once a month, I throw some clothes in a bag and catch a train to New Jersey. As soon as I'm there the bag gets tossed aside, the baby is kidnapped from whatever brother happens to be entertaining her at that moment and then I hold her face up to mine to whisper my hellos. I look for a flicker of recognition and some part of me hopes that she'll smile, knowing that the chances for both are slim. She looks in every direction but mine, and still my heart regularly explodes. Her eyes. One eye, her right eye wanders off randomly. Her eyebrows also go up and down so that she constantly looks surprised by what she's seeing. Surprised by what's in front of her and off on the periphery, where her right eye is exploring things. She looks ridiculous and heartbreakingly cute.
I have never loved someone more or wished for the outcome to differ from what it will likely be. Probably not today (it's been months since her last uncontrolled seizure), but eventually and entirely without warning she will be there, nose pressed up against mine and then, she won't. This is the part that I cannot accept. This knowledge, the result of articles and google searches that always leave me bargaining with God.
Her last trip to the hospital, for an annual check-up that we'd known about for months, showed an almost constant rate of seizure activity. We hadn't prepared ourselves for that blow. Or, maybe it was just me that was unprepared. I sometimes manage to convince myself that she'll outgrow all this. That she'll get better as she gets stronger. I tell myself that she's beaten the odds so far and so, no one can definitively say what her future will hold. It's a mental pep-talk that keeps me from focusing on what might be, and focusing instead on how perfect each moment with her is. Even so, whenever she ends up in the hospital, I become painfully aware of the delicate balance between life and death, and how absolutely incapable I am of handling that transition with any sort of grace.
Therapy session 1: Sitting in sweatpants, drinking wine and chatting with one of my favorite people on this earth. We were crying and telling one another just how much we loved/valued our friendship in 20 minutes flat. Happily buzzed in 45 (both complete light weights), and elbow deep in our take-out Thai food about an hour after that. Note to self: need weekends like this more often.
Therapy session 2: Holding a sleeping baby. Realize that she is her own kind of perfect, even if the uncertainty of her future sometimes devastates me.
Therapy session 3: Driving into work because I can't find street parking and refuse to get another ticket. Accidentally land myself in the middle of a construction zone, stuck behind a cab driver who is trying to put his car in reverse. One yelling match (complete with waving and dramatic hand gestures) later, I realize that I have managed in that moment to get rid of every stress from the last 3 weeks. Decide to yell at cab drivers more often.
I went and saw The Peanut yesterday and she's doing great. Which really, is a small miracle in and of itself.
Happy New Years, friends.
at 5:30 this morning I woke up to find policeman standing in the living room of The Aunt and The Uncle's house. Walking up the stairs I remember an "oh no!!" slipping out of my mouth, and shortly thereafter dissolving in a puddle of tears. Jackie was laying on the couch, in a full blown seizure making a sound as if she was clearing her throat. A few minutes later the paramedics showed up and began taking her vitals. I lost it all over again, when one of them looked shocked at the response to the standard "How long has she been like this??" The answer: "30 minutes". As they got ready to take her away, I leaned down, touched her head noticed that her lips were blue. It's really hard not to freak out in moments like this. The last time this happened, we were really close to losing her. This time didn't seem as bad, but then details of what was happening at the hospital would slip out "...did he tell you that she stopped breathing?" Not panicking for me, wasn't really an option. The strange thing though was that I seemed to flip between the two. Falling apart, and then making coffee. Incapable of finding words because the words are directed at a crying 11 year old, and then starting a load of laundry. I think you move because you have to. Because it brings logic, and normalcy to a time that is anything but. So at 7 in the morning I sat there with my coffee, wondering if it was an inappropriate hour to have a drink. All day I found myself doing stupidly mundane tasks - laundry, cleaning, running the kids to practice, cooking, making paper snowflakes... I wanted to feel something other than helplessness. I don't think I succeeded at all. I came last night because I'd missed her since I moved to Brooklyn. I came so that I could cuddle with her, and remind her what I looked like. I held her 24hrs ago, and didn't see this coming at all.
She's still in the ICU, and probably will be until monday. The good news is she's stable, and will hopefully stay that way.
To everyone that threw up prayers on Jackie's behalf, thank you so much. It means alot.
If you look at the pictures below, the one with the kid rocking a pumpkin outfit, you wouldn’t know. For instance, you wouldn’t know that in spite of appearances she’s not 3 months, she’s a year. You wouldn’t know that she’s had a really hard year, one like most of us thank God, have never had to endure. You also wouldn’t know that her parents astound me. They’re relentless in their faith. The family, collectively, treasures this little person more than I’ve seen anywhere else. Ever. You wouldn’t see us taking turns holding her, celebrating every minute victory (she gained 8oz!), or what happens to our insides when we realize that in spite of everything, she is, and will probably remain, really fragile. A few weeks ago, she dislocated her elbow. It was just her arm, not anything especially scary or traumatic. But she was helpless, and hurting, and she’s already been through so much. So we stood there, and cried along with her while the doctor popped it back into place.
I haven’t managed to give up on the hope that I’ll get to watch her grow up, even if statistically, the odds aren’t in her favor. This is my own form of denial, one that I’ll keep on living in, until circumstances force me out of it. I want her to have a future, even if that future looks dramatically different than I would’ve hoped for when I initially heard that baby #5 was on the way. The whole situation… the realization of just how much you can love someone and yet have no control over whether or not they stay or go, is both incredible and heartbreaking.
When I first announced that I was moving to manhattan, no one bothered to inform me that moving to New York is akin to winning a lottery. I don't mean this in the You've Just Won a BAJILLION Dollars sense of things, but rather in the There's Not a Snowflakes Chance in Hell that you're "moving" in the time frame you'd like to believe missy.
"Moving" has instead translated to living indefinitely with the aunt, the uncle, and their 5 off-spring. Fortunately for me, I adore them. Unfortunately for them, they've inherited child #6. Working in their favor is the fact that at least I am the child that calls when I say I'm going to call, goes to bed (ALL BY MYSELF), and pokes fun at The Uncle for the benefit of The Aunt. I've also mastered the art of baby-feeding which really, is no small feat when you consider that this baby likes to spit food back out projectile-style whenever she's decided that she's done with her supper. Because in the world of Jackie, who could possibly have time for eating when there is so much kicking and stretching to do? Mealtimes are a battle, especially when we try to feed her anything other than ice cream and liquid rainbows. All that being said, I wouldn't trade these last few months for anything. Mostly because there are days that are totally shite, and then I come home to this:
She turns two in a few weeks. By this age, most children are walking alone, talking, becoming mini-versions of their adult selves. But this week just shy of her second birthday, Jackie sat up. She amazes me still.
Each time I sit down to write about Jackie, it always begins with the same sentence "she's her own kind of perfect." That's also where I usually stop writing, my finger hovering over the space bar, because I don't know what to say beyond that. She is broken and by every definition fragile. But still, to me at least, mind-bogglingly perfect.
I have never loved someone more or wished for the outcome to differ from what it will likely be. Probably not today (it's been months since her last uncontrolled seizure), but eventually and entirely without warning she will be there, nose pressed up against mine and then, she won't. This is the part that I cannot accept. This knowledge, the result of articles and google searches that always leave me bargaining with God.
