"Mom, Billy said he saw me in the car. What did he mean by that?" Trout asked after church yesterday.
I told her that it probably meant he had seen us drive by on the way to her friend's house on Friday, when we had seen him walking out of his house. Billy is in both her math class and church youth group, which is an odd coincidence considering the church is in the next town south of us - it's the same church that houses the preschool that Nemo attends, that all four of my kids have attended.
"Well, yes, okay, I understand that, I guess. It's just...why? Why did he say that, Mom?"
Oh baby girl. Have you looked in the mirror lately?
Two weeks from now, it won't matter that Sunny went to school today without her hair brushed. It won't matter that Little Man has apparently been wearing the same pair of jeans for entirely too long, despite a quantity of clean jeans in his drawer. It won't matter that I have resorted to bribery to get Nemo to take his foul-tasting antibiotic (you want M&Ms, buddy, you gotta take the meds). It won't matter that Trout couldn't answer a question on her science homework last night and had a crazy meltdown when she asked her father for help and he wanted to teach her how to get the answer rather than just give it to her and how her life was going to be ruined because she wants to be a good student and doesn't have the experience yet to realize that one missed question on one night of science homework isn't going to change the fact that she is an exceptional student.
What will matter, is that Sunny and I shared a nice walk to the bus stop together, just the two of us, and how I pulled her hat out of her backpack and stuck it on her head so she wouldn't be cold in the blustery wind and we talked and smiled. And that Little Man is far more interested in reading his biography of Jim Henson for school than the fact that his favorite pair of pants might be thinking about walking off by themselves and are destined for kidnapping and washing. And that Nemo gets over the strep that is making him, and consequently the rest of us, miserable, and that he knows his parents love him enough to temper the have to with something nice, and that we shared those M&Ms and a good long cuddle on the couch while watching Cars together for probably the 87th time. And that Trout knows that we are here for her, and while we won't let her take the easy way out, we will make sure she knows how to find the right way and how to keep it all in perspective, and love her no matter what.
And it is vital for me to remember this, when faced with the mess left in the wake of the kid whose antibiotic is making him sick to his stomach at 2am, when I'm facing a mountain of laundry on no sleep and an inability to find an affordable puppet of Kermit the Frog for Little Man's report, and a strong desire to just sit and brush Sunny's long hair 'til it shines, and no clue how to convey to Trout just how awesome she is when she's twelve and won't believe a thing I say, anyway.
This past week, my words have failed me.
Last Monday, the world lost one of the good ones. One of the very best ones. We lost Susan. I read this post, gasped, and burst into tears. I wept for her husband, for her parents, her relatives, and her friends, but mostly, I wept for her boys. I know all too well what it's like to grow up without your mother, though not for as long as they will - they are 5 and 7, and I was 15.
Monday night, the moon was brighter than I've ever seen it. It was almost as bright as Susan's smile, and I felt her presence in it. She was watching us. I'm sure of it.
On Wednesday I attended her funeral. The ritual of the Mass and the presence of the DC Moms were a comfort. Then Marty, Susan's best friend since childhood and a gifted musician, sang His Eye is On the Sparrow. She sang her heart out, you could hear her love for Susan in every single note, and we wept. I don't think anyone didn't, at least not anyone I could see. I don't know how Marty did it, I don't think I could have made it eight bars in without losing my composure. It was a gift and an honor to be there, to listen - thank you, Marty, for allowing us to share in that.
All week I've tried to write this post, and twenty times I've started and stopped. None of it is worthy.
Susan was warm, smart (a freaking astrophysicist, I'm so not kidding), generous, kind, feisty, vibrant. She had that rare ability to make anyone feel like they were her best friend the instant they met her. She had an intense gaze that never wavered when she looked at you - she was never looking beyond you, waiting for someone more interesting to show up. You were more interesting than anything or anybody else. For me this was always such a gift, because I'm awkward at the best of times, uncomfortable in my own skin, convinced I'll say and do the wrong thing, and usually doing exactly that. But Susan never seemed to notice, though I'm sure she did. I've never seen anyone else who lived so in the moment as Susan.
The last time I saw her was at Jodi's house for HomeHer. She swept into the house in a red ball gown, as bright as the smile she always had plastered on her face. A little while later we talked, after she had changed out of the dress.
"So, I have the Bloggess' red dress up there. I want everyone to wear it and get their picture taken so I can put them together in a collage. You know, if they want to. No one has to. Are you interested? Would you do it?"
So many things instantly went through my head. No way. There's no way that dress that just fit Susan will fit me. I'm not exactly built for that, too short and too fat. And then get my picture taken? Uh huh. It just isn't going to work - I'll look like the dork I am. People will laugh at me*. But... then.... what the hell is wrong with me? She has cancer, and she wore that dress. She wants a picture of her friends in the dress. She doesn't care about their body proportions. Maybe if somebody else does it first...
Susan didn't say anything else, just waited, almost as if she could read my mind, and just let it play out. Other people were sitting down around us, starting to talk to both of us.
"Yes. I'll do it," I heard myself say.
Susan beamed - there's just no other word to describe the expression on her face. "You will? That's WONDERFUL!"
And I did. I couldn't walk in it because it was more than a foot too long and I thought I was going to trip and go ass over teakettle down the stairs. When I got my picture taken, my hands are clenched because I had no idea what to do with them (see also, awkward). I'm top row, second from left:
Photo borrowed from Lolli - thank you!
It was magical, but the best part was watching Susan's smile each time one of us descended in the dress. And that's the thing I'm going to remember, and miss, the most.
Please consider making a donation to the Inflammatory Breast Cancer Research Foundation in Susan's name. And if you have any stories about Susan, no matter how trivial you think they are, please send them over to my friend Stephanie/Minkymoo, who is collecting them to make a book for her boys. Please don't underestimate how important this is -- for those of us who have lost our parents young, stories are all we have to learn about them as adults. It's something I don't have of my mother, and I've often toyed with the idea of getting out there and researching that, and it's one of the reasons I started to blog in the first place. This will be an amazing gift to her boys and none of it will be trivial to them.
Not that any member of the DC Moms would do that. They wouldn't. They are an extraordinary group of women and I've never felt "less than" in their presence. That was just my own insecurities talking -- they tend to be a noisy bunch, unfortunately.
I'm not a girly girl. Anyone who knows me in person, and even a bunch who don't, know that. I don't wear makeup except on special occasions, I don't worry too much about the clothes I wear as long as they are practical, comfortable, and semi-decent, and I only own six pairs of shoes, including my hiking boots. You will never hear me say "I must have left that in my other purse." I wear my hair in a ponytail 98% of the time. And I almost never get my nails done.
But I did today. My girls and I met up with the fabulous Stacy and we got our nails painted purple.
Clockwise from top left - Stacy, Trout, Sunny, me.
Because she's warm, and smart, and funny, and strong, and has always made me smile. For Susan, I put on The Bloggess' red dress and let someone else take my picture, even though I'm nothing but a dowdy housewife with no conceivable reason (or the body stature) to wear a red strapless ball gown. But I did it because Susan asked me to. And if it will make her smile, I'll paint my whole body purple and be the most purplicious princess there is. But we started with just our nails.
The last time I got my nails done, in 1995, the woman who did them accused me of never working hard, because my hands were too nice. This time, I wasn't surprised that there were no such comments. My age and life work show on my hands. This time, the woman told me my eyebrows looked like bushes, and I should let her clean them up. I told her to leave me as nature intended, but with my nails painted purple.
"Is there anything else you think we should know about your child to assist in his assessment?"
The question mocks me for a week before I finally buckle down and finish the paperwork to begin the process of having Nemo evaluated. What do I say? Where do I begin?
He's always been different. I've always known something was different. He's not my first trip around the child rearing block.
When he refused to make eye contact, or broke it after a nanosecond, we blamed it on his eyes. And when he stood too close to people when he was talking to them. Or when he walked up to a strange teenager and got right in his face and said "Hey you guy! Play! You da BAD GUY!" And when he couldn't pay attention at t-ball practice and had tantrums instead, the same t-ball that he'd been begging to play. But then he had his eye surgery, and nothing changed. Do I tell them that?
We thought he threw tantrums because he was the baby. Because he was competing with three older siblings for attention. Because he was frustrated that his eyes don't work the way they should. We figured he'd outgrow them. But he hasn't. He still reacts like a three year old when another child takes a toy from him or when he has something he shouldn't have and someone has to remove from him. Do I tell them how, at a party last spring, he got mad at another boy who splashed him in the kiddie pool and jumped on the kid's back, put him in a headlock, and would have drowned the kid had I not seen what was happening and sprinted across the yard, jumped into the pool and bodily dragged him off the kid? And that he really has no understanding of why that was not a good thing to do, despite several of us both hysterically (me) and calmly and kindly (Little Man's baseball coach at the time and the father of the child Nemo jumped who is one of the most awesome people on the planet) explaining to him that it was dangerous and it hurt the boy? And how he cried for hours when I took him home because he didn't really understand anything other than everyone was mad at him? And how I cried for hours after he went to sleep? Do I tell them that?
Do I tell them that he often can't walk by anyone without touching them in some way, be it running his hand across their back or punching them in the arm? Do I tell them how he doesn't seem to understand how others feel when he hurts them? Or how we've been working on how people sometimes don't like to be touched and how we can't do that without permission and he just. doesn't. get. it? Do I tell them how he climbs on everything, how he's been jumping down the stairs since he was a year old, how he hurtles through life at top speed from the time he gets up til he collapses in sleep again? Do I tell how amazed I am that we haven't hit the emergency room more than we have, because he has no judgment about his capabilities and no fear?
It was easy to tell them about last year at school, when his teacher told us he had trouble crossing the midline (moving his right hand to the left side of the page and vice versa) when coloring, if they could get him to color at all. He hated doing it. They tried finger paint and other media, he hated having things on his hands. She told us to work on pencil grip over the summer, and scissor skills, and we did, when we could get him to do it. She told us to give him nuts and bolts and screws to practice putting them on and taking them off. We did; he threw them at us in frustration. He has a wicked arm.
It was easy to tell them about this year in school, where he can count up to 20 and knows his numbers by sight up to ten and can do rudimentary addition and "take away" if you talk him through it and he can recognize patterns, but he can't write the numbers. Except one. Straight lines aren't hard. It was easy to tell them that for some reason, he isn't learning the concept of letters as readily as he did numbers, not just the shapes and names of the letters, but the sounds, too. It was easy to talk about the weirdness of his pencil grip, how he turns his hand upside down and tries to hold the pencil with his pincer grip, between his index finger and his thumb, and how we've been working on that daily for months, and how now he's progressed to picking up his pencil in his left hand and putting it into his right, then using the left to shape his right hand around the pencil into almost the proper grip, just like we do to help him. Almost right. And how he holds the pencil too high up, and doesn't seem to be able to press hard, so his writing is light, as though a feather had danced across the page.
But I don't know whether to tell them that he's loved trains seemlingly since birth and wants to know how they work, and how we used to go to the Gaithersburg Museum when they had their train layout and he befriended an older man who teaches lessons on train history there and impressed him by knowing not just what pistons are but how they work? At three years old. Or how he'll sit for hours, almost the only time he sits that long, and look at his father's model railroading magazines, planning the trains he wants to get when he gets big? Or how, since this is a house full of gamers, he can play Minecraft for hours, building his own structures and making minecarts and corralling his own cows, and how you can practically see his brain bouncing from thought to thought, and how his game playing and building skills in Minecraft are as good as any of his siblings, and far superior to theirs at that age?
Do I tell them about the days, the awful days, when he starts out by hurting a sibling, or pinching or kicking me in defiance of something I've asked him to do, when we put him in timeout, and take him back, and back, and back, and it has no influence on him? Or the few dark days when after nothing else worked we spanked him, and that didn't work either? Do I tell them about how for two years now we've worked diligently on defining scripts for him to use in various social situations because he has no idea what to do, what to say, how hard we've worked on defining expectations for him? About how hard it is for him to transition to new things, about how he thrives on routine, routines that all too often need to change, because of the nature of life with a family of six people?
Do I tell them about the good days, the times when his siblings get home from school and he starts running as soon as he hears the door, yelling "Trout!" or "Sunny!" or "Little Man!" and grabbing them in a bear hug, desperately happy because they've been gone all day long and he missed them? About how lively and interested he is in computer games and trains and how he can talk forever about them? About our nighttime bedtime routine, where we sing along to the Piggies song on his jazz lullabies CD, the two of us together, sometimes with me holding his toes, sometimes with him holding mine, and then how we snuggle together on his bed, and he pats my cheek, still, or asks if he can "have your tummy, Mommy" because he wants to rub the soft skin, and how I've been working on teaching him that isn't appropriate anymore, but it's a holdover from nursing, which I have no doubt that if we hadn't forcibly evicted him he'd still be doing, and he wants the skin to skin contact? He doesn't care if it's appropriate or not. It comforts him. Or how last year, as we were leaving school on his last day before his surgery, and I mentioned that his teacher would miss him, he said "Hang on, Mom" and went back to the playground to grab her in a bear hug so she wouldn't miss him so much?
On first blush, any of these things can be obvious, or completely hidden. Most often they're subtle; you need to spend a few days with him, see him over time, before the full enormity of what's going on with him hits you. He has good days and bad days. And really my greatest fear is that on the assessment day, he'll be having a good day and they will tell me he doesn't need any help at all.
This winter break from school has been wonderful. Quite rejuvenating. I've slept in every day, at least until 9, some days quite a bit later. BigDaddyFish got up with the kids and kept them under control until I got up and let me get up as I wanted to, not because someone else woke me up for because I had to for some schedule. It has been amazing to not have to drive anyone anywhere.
Tomorrow, when the kids go back to school, is going to hurt.
I started this post yesterday, and was going to write about how everything was great until Sunday when Little Man dropped his brand new iPod Touch out of his pocket onto our front steps and shattered the screen. I was talking to one of my BFFs and saying how I was worried it was a harbinger of things to come this year, and she said maybe it'll be the worst thing that happens to us all year. I wish she had been right.
Last night Trout blacked out and fell in our kitchen, hitting her head on the wall and mashing her glasses into her face. I will spare you the gory photos unless you ask nicely, but the glasses cut her just below her eyebrow and she had to have five stitches. The ER was particularly busy for a Monday night, and we had to wait forever to be seen.* Once we finally were, they were concerned not just about the cut, out of which the doctor pulled a small sliver of her glasses lens (which is PLASTIC and didn't shatter, we still can't figure out where it came from), but why she blacked out in the first place. They did some tests and some blood work and near as we can figure out for now, she was dehydrated and mostly fainted. She wasn't unconscious for any length of time and in fact argued with us about going to the ER in the first place, as she was adamant she was fine, so we knew she wasn't seriously injured from the fall. So we'll follow up with her regular pediatrician in the next couple of days, and we'll head to a one-hour glasses place to get her some new glasses. Now we're working on the most creative story for how it happened - my current favorites are an unfortunate trapeze accident or skydiving over the Grand Canyon. Feel free to leave your most creative ideas in the comments, I need something to cheer me up.
It's a good thing I got all that rest, AND that I started working out again. I'm going to need my strength. Anyone want to place bets on what the number three thing is going to be, since bad things happen in threes?
*We have a free-standing emergency center right here in our town, and then there is the associated hospital a couple of towns (but really only about a 15-20 minute drive) south of here, which has a pediatric emergency department separate from the adult. We went to the local ER because it's usually not busy -- it's where we went for all the rest of the stitches the kids have received [see also: here and here] but based on our experience last night/this morning, I just may bypass that and go straight to the peds ER next time.
Friday evening while Trout was still in the hospital, I developed a mild sore throat and a scratchy voice, which proceeded to worsen on Saturday. It got to the point where I couldn't read to her anymore, so we snuggled on her bed and watched ABC Family Christmas programming instead. We came home on Saturday, and Sunday I had no voice whatsoever. None. I did that ridiculous shout-at-the-kids-in-a-forced-whisper thing that has no effect other than make the kids laugh. Monday my voice was back more but by then the cough had begun. Monday night was a horrific night of next to no sleep thanks to the coughing and feeling like there was a weight on the top of my lungs and Tuesday morning BigDaddyFish sat up in bed and growled "You're going to the doctor today!"
One chest x-ray and a failed peak flow test later (and my lungs are usually so good that I used to be able to yell louder than the marching band in HS and kept that up until a few weeks ago), the doctor declared I didn't quite have pneumonia yet, but gave me an antibiotic anyway in hopes of staving off the full-fledged version. Turns out that was the best decision ever, because after a couple of days on the antibiotic and rest and I was tired but functional. We had a blissful three days of health, but by the end of the week, BDF had started coughing and feeling run down.
But he didn't go to the doctor. And didn't. And didn't. He kept thinking he was getting better, but he really wasn't. After a full week of neither one of us getting any sleep and after one night of getting up more times in the night than I had since Nemo was a newborn I begged him to go to the doctor. He went to the same DocInABox that I went to, but he apparently got a brand spanking new hire who clearly didn't know how things worked. He didn't do a chest x-ray. He didn't do blood work. He had called a nurse in to help, but didn't know that the nurse he called was actually a radiology tech. He didn't even listen to BDF breathe, only looked in his throat, declared he had a sinus infection and gave him Augmentin. I was pissed and wanted BDF to go to his own doctor first thing Monday morning, but he swore he was getting better. And swore it again on Tuesday. After another horrid night of cough, fever, intense night sweats and me threating divorce if I couldn't get some sleep, he finally went back to his own doctor on Wednesday, who was incredulous at what had transpired and sent BDF for a chest x-ray. Which of course showed pneumonia, so clearly that Sunny could read the blasted film. He started on Zithromax in addition to the other antibiotic and it was a race against time to see if we could keep him out of the hospital.
We won that race. BDF went back to work today, but I anticipate he'll be home early, as I don't think he has the stamina to work a full day. He said he told the doctor he needed to go back to work last week and the doctor looked at him strangely and said "Uh, nooooo." and wrote him out for the rest of the week.
It has been a brutal fall, worse even than when the kids had H1N1, because at least then they pretty much had it all at once and got it over with, and there wasn't any coughing to ruin anyone's sleep. I'm so behind. I haven't slept properly in a month. We could ski down the piles of laundry I have. In November there was only one day where all four kids went to school as scheduled. The kids have had to put forth a herculean effort to get caught up on all the school work they missed. I haven't even touched on Nemo's issues, which I will blog some day, maybe in February. Thank God for online shopping because now all I have to do is get the rest of the stocking stuffers. We don't have a Christmas tree yet and frankly my holiday spirit has pneumonia and is wheezing along, unable to sing carols. All it does is stare off into space.
What I want for Christmas? A week-long nap, no one else getting sick, and all the kids in school so I can catch up. Is that really too much to ask?
As I mentioned in my previous post, Trout had developed pneumonia and started antibiotics for that on Monday. We had figured that she'd be on them for 24 hours and be visibly better, just like Little Man did, but it was not to be. She continued to run fevers. Wednesday her temp dropped to about 101 during the day, so I figured it was a downward trend and didn't call the doctor. Big mistake. She spiked back up over 103 that night, and was still 103.3 when I called the on-call pediatrician Thursday morning, and he sent us to the hospital.
Our hospital has a separate pediatric emergency department, so we had no wait at all, and within 30 minutes we had the chest x-ray the doctor ordered. The doctor came into our room, kinda leaned up against the wall, shook his head at me, and said "She's going to be here for a few days - she needs IV antibiotics."
So upstairs we went, where she received huge doses of IV antibiotics, plus oral antibiotics, plus fluids, plus a lot of really, really crappy food. Seriously, you'd think it'd be impossible to mess up a pb&j, but you'd be wrong. BigDaddyFish brought over a care package of pb&j sandwiches for her and honey baked ham on rolls for me so we'd make it through. My sister-in-law came with her daughters so we had a bit of visiting time, and they brought presents that Trout loved. It really helped pass the time.
It was hard. The pullout chair that the parents sleep on is an instrument of torture - my back may take a week to recover. BDF says it's really ridiculous they don't just make bigger, double size beds because you know the parents would rather sleep with the kids, and more than a few kids would like their parents that close, too. You can never sleep in a hospital, there's always something beeping or someone coming into the room to take measurements or too much light. Or, in this case, someone vomiting quite loudly in the next room, or a neurosurgery patient whose brain was rather vociferously not reacting well to his surgery. And still the doctor seemed not to understand why we were champing at the bit to get out of there.
As a result of our blessedly short stay at the hospital, here's a list of things for which I am thankful:
I am also thankful for each of you who spends the time reading about my crazy family. I hope you had a wonderful Thanksgiving.
Let me 'splain. No, too much, let me sum up. Buttercup is marrying....no.
Here's the short version.
I. Am. Exhausted.
Yesterday at the pediatrician's office the nurse practitioner looked at me and said "You look like you could use a couple of days at MomSpa."
Indeed. I would settle for a couple of days alone in my house to catch up on stuff. And nap. Excessively.