Darkness and Light: Bittersweet and Incomplete, a Year Later

Note: This was supposed to be published around Christmastime, 

so when I say "now" or "last week" or whatever, that's the time frame. 

(This is lengthy. And sad. Probably not for the casual reader)

Part One: Some Backstory

The faithful readers among you (God bless you, even I get tired of reading my stuff after awhile) will recall that this time of year was not very good for me last year - the general joy of the season was overshadowed by the fact that I had miscarried a twin pregnancy in June (2012), and the due date had been Christmas Eve. I wrote about the miscarriage here and here; I talked about last Christmas Eve here, so I won't do that again, but feel free to read them if you'd like. In the Christmas Eve post, I wrote I expected that last year would be the worst, this one would be a little better and next year better than this, etc. I didn't anticipate that this year would be … what, exactly? … not as bad as last year, but worse than I thought it would be:

I don't know how common it is to talk about the contrast of light and dark during the season of Advent, and though I suppose there's a lot about Jesus being "the light of the world," I don't remember it being discussed as specifically as it has been this year, at our church - one Sunday it was back-to-back, Sunday School and then the sermon (not Matt's, our senior pastor's) on the same Bible verses without our SS class purposely following a curriculum that aligns with the pastor's. 

In Sunday School, we read some passages from Isaiah 60, John 1 and 2 Corinthians 11. The study materials asked if any of us had ever experienced complete and total darkness, like when you are deep in a cave and turn out your headlamp, or an interior room in a building with no windows or lights. I've never been in a cave at all, I don't believe, but the times I've been in the most (literal) darkness, my main feeling was one of disorientation - how in the world do you know where you are, when you have no idea where anything else is? When you can't even see your hand in front of your face, how do you find your way out? If you move, how do you know you won't fall off a cliff or something and be in even worse shape? Ah, metaphor. The phrase, "I was in a dark place" is somewhat overused in my circle of people, but I think it's accurate here - the miscarriage was about the darkest place I have ever been in, the worst I have ever felt, as if I was in that cave all by myself. I didn't know how to get out, I was so sad and scared out of my mind and really didn't understand anything or know what was going on. 

In the Belasara song mentioned in last Xmas Eve's post, there's a line in the chorus that says, "and honestly, there's a part of me, that just wants to go to sleep" … when I saw my therapist about a month after the miscarriage, she asked if I had experienced any suicidal thoughts. I hadn't; I've been through a few bouts of major depression in the past 10 years but even at its worst, I cried a lot and felt hopeless a lot, but never considered anything like that. And that was still true even after the most physically and emotionally painful experience of my life - I told her I'd had some vague thoughts of, I want to be with the babies, but from what I'd read that's really typical so I wasn't worried about it, and she agreed … I believe there is a Heaven (not too big on the concept of Hell, though) and I suppose I basically believe we all go there when we die, but please don't press me for details on the "whether too-tiny-to-see miscarried fetuses go to heaven" issue - I still have no real, definite thoughts on that.

As far as moving from darkness to light, goodness knows there are tons of examples, but for whatever reason the first thing I thought about was the story Bedtime for Frances by Russell Hoban. We love all the Frances books, and so do the boys. Matt didn't read them growing up - I guess they are sort of more for girls, but now that he's met the little badger family he loves the parenting lessons they incidentally provide. Anyway, in Bedtime for Frances, as you can likely guess little Frances is coming up with every possible tactic to delay going to bed - forgot to brush her teeth, wants a drink of water, etc. At some point Frances sees what she believes to be a giant lurking in her room, and runs to tell her parents. After her parents send her back to her room, Frances confronts the giant and realizes it is only the silhouette of her bathrobe, tossed over a chair. So the light shows us that what we thought we were justified in being afraid of, isn't so bad after all. 

Part Two: The Scriptural References:

Isaiah chapter 60: (a vision of Israel's future): (1) Arise, shine, for your light has come, and the glory of the Lord has risen upon you … (4) Life up your eyes and look around; they all gather together, they come to you; your sons shall come from far away, and your daughters shall be carried on their nurses' arms. (5) Then you shall see and be radiant; your heart shall thrill and rejoice … (8) Who are these that fly like a cloud, and like doves to their windows? (9) For the coastlands shall wait for me, the ships of Tarshish first, to bring your children from far away … (19) The sun shall no longer be your light by day, nor for brightness shall the moon give light to you by night; but the Lord will be your everlasting light, and your God will be your glory. (20) Your sun shall no more go down, or your moon withdraw itself; for the Lord will be your everlasting light, and your days of mourning shall be ended. 

(Gospel of) John chapter 1: (1) In the beginning was the Word, and the Word was with God, and the Word was God (2) He was in the beginning with God (3) All things came into being through him, and without him not one thing came into being. What has come into being (4) in him was life, and the life was the light of all people. (5) The light shines in the darkness, and the darkness did not overcome it … (9) The true light, which enlightens everyone, was coming into the world … (14) And the Word became flesh and lived among us, and we have seen his glory, the glory as of a father's only son, full of grace and truth. 

2nd Corinthians chapter 4: (1) Therefore, since it is by God's mercy that we are engaged in this ministry, we do not lose heart. (2) We have renounced the shameful things that one hides/ we refuse to practice cunning or to falsify God's word; but by the open statement of the truth we commend ourselves to the conscience of everyone in the sight of God. (3) And even if our gospel is veiled, it is veiled to those who are perishing. (4) In their case the god of this world has blinded the minds of the unbelievers, to keep them from seeing the light of the gospel of the glory of Christ, who is the image of God … (8) We are afflicted in every way, but not crushed; perplexed, but not driven to despair; (9) persecuted, but not forsaken; struck down, but not destroyed … (16) So we do not lose heart. Even though our outer nature is wasting away, our inner nature is being renewed day by day. (17) For this slight momentary affliction is preparing us for an eternal weight of glory beyond all measure, because we look not at what can be seen but at what cannot be seen; for what can be seen in temporary, but what cannot be seen is eternal. 

So (refer to the page, "Selfish Scriptural Interpretation" for more instances of me applying Bible verses that are really about Egypt or Israel or whatever and turning it into a personal message to me) … this makes me feel a little better. And it might help me refine my answer to the Heaven question. 

Part Three: Pretty Bird

So here's something - for all three pregnancies, Matt and I have used birds as a symbol. I think this started during my pregnancy with Simon, when Matt found some stickers in this really nice stationery store in DC, of birds and eggs and nests - no, Matt is just reminding me it started when he suggested referring to our as-yet-unborn awesome son as "Tweet" (this was before Twitter was, you know, everything). I did not care for Tweet (we went with my original idea, Little Person or LP, which I came up with about 2 minutes after I finished my positive pregnancy test - oh, there's a little person in there), but I did stick with the Mama Bird idea. Then we chose birth announcements with two parent birds and one baby bird, and a similar one for David's, as well as bird decals for Simon's nursery.

And when we found out about this pregnancy Matt got me this for my birthday:

When I put it up originally there was just one little birdie in the cage; we didn't know about the twin part until after the miscarriage had already started. The image shifted for me, from one birdie who was waiting to get out, to two that would never be getting out. I moved the decals upstairs to my desk and took them down when we moved - i haven't put them back up yet, partly because our spare room/office is in such disarray we don't know where everything will go yet. Matt got me some new ones for Christmas with the idea that I might not want to put the old ones back up; I get that but I haven't decided yet one way or another. I have a little memory box I made; there's not a whole lot in it except the little pajamas … I have resisted really doing much with it, like I was going to take the DVD of the ultrasound and print out a photo, but I haven't had the courage to actually look at the images yet. It's not …. it's not what you are likely thinking; the pregnancy technically lasted 12 weeks but all that was visible was the egg sacs (yolk sacs?) - one egg had been fertilized but then didn't grow or develop at all, and the other only developed a tiny bit and then stopped. So "nothing resembling a fetus" was what the ultrasound tech said; just tissue and blood (God, there was so much blood). 

Matt and I both love Jenny Lewis, and these are the lyrics to her song "Pretty Bird", on the album Acid Tongue. Take a listen here:

Pretty bird, pretty bird
why you so still?
pretty bird, pretty bird
we've been waiting on you

(chorus)

you go west for the black setting sun
you go south to the white spirit of earth
you go east for those real green eyes
you go for north, walk the good red road

pretty bird
there's a mirror in heaven
pretty bird, pretty bird
there's a window on earth

(chorus) 

some pity me
ooh pity me yeah
stars pity me for
the blood of the pretty
the blood of the pretty
the blood of the pretty
bird

pretty bird, pretty bird
we're starving you still

(chorus)

Disclaimer: I do not know what this song is actually supposed to be about. When I tried to find out, a commenter on the song lyrics page said she'd heard Jenny Lewis say that it was about a story she heart on public radio about a woman being raped on an Indian reservation … if that's the case I apologize for co-opting it for my own purposes, but if you know me I don't hesitate to use Bible verses to suit my own purposes (see above), so pretty much everything else is fair game too.

Part Four: Finishing Up

I started this blog about our family to possibly help anyone out there who has a child (or has received a prenatal diagnosis) with Down syndrome or some other "special need" - when we initially learned this was a possibility for David, we sought as much information as we could, and hearing from parents who had faced similar issues was helpful for the most part. It also helped me to write everything - to try to order it in some logical way so that others might understand it, and so I might understand it better myself. The same has held true for my pregnancy loss - visiting sites like cafemom.com was mostly helpful; I didn't identify with everyone but generally it was good to know that many women had the same emotional struggle, some of them multiple times. So I hope that if you or someone you know has had a miscarriage and is looking for support, that at least some of what I'm saying makes sense and is perhaps of some comfort. 

I didn't share the feelings related to the light/dark issue with Matt immediately; I didn't bring it up until (some time? I don't remember how long) later. After I told him that I was feeling sad again ("sad" is really the best word, sometimes the simplest is the best), I asked him if he ever thinks about the miscarriage any more. His reply was to the effect of, "from time to time," and he seemed genuinely surprised when I said, "I think about it, to one degree or another, every day." I don't mean to make my dear husband sound insensitive; I think this is the individual/private nature or pregnancy loss, that no one can really understand how the woman feels, and there is a sex/gender gap that is likely impossible to bridge - guys don't know what it feels like to be pregnant in the first place, and though they can see you are going through physical agony and emotional hell, they simply can't grasp the helplessness you feel as you realize something is slipping away from you and there's absolutely nothing you can do about it. 

I do still think about it every day, but as I said to Matt, some days it is truly a passing thought and it's usually only if there is a specific pregnancy/baby/miscarriage-related reminder on TV, in a magazine, or online I don't usually think about it in any great depth, and I rarely cry about it, though I am a little right now. 

I don't know if the due date of Christmas Eve means I am any more sad than I would be otherwise - any time late in the year would be the holiday season, and I'm sure I would feel about as bad if the due date were October 14th or November 8th or whatever. But at Christmas there sure is a lot of talk about the baby Jesus, and that Advent is a time of "Joyful Expectation." Last week we had a guest pastor at our midweek contemporary service, and she talked a lot (A LOT) about the baby the baby the baby that is coming. I happen to like this pastor a lot- she is young and smart and lovely and a great person, but I was REALLY READY FOR HER TO STOP TALKING ABOUT "THE BABY." I was ready for her to move to a more theological standpoint, that Christmas is not so much about The Baby, it is about the Incarnation of our Savior, about God coming to earth to live among us as a human being. But I suppose I'm not going to get very far with that wish - folks will talk about it, but Christmas is about the birth and Joseph/Mary/shepherds/Wise Men/star/etc., and there's no getting away from that. 

(General grumpiness Joanna really can't explain - I really don't like talking to 

kids about Christmas in terms of "Jesus' birthday." 

Yes, it is celebrating the day he was born and yes, 

that is your birthday, but I think singing Happy Birthday to Jesus 

and having birthday cake and all is a little too much. I know this is generally harmless

 and I get it - this is something kids can relate to. 

But kids can also apparently relate to SpongeBob, and that's not anything

 I want to spend a lot of time talking about, either).

As always I will try to end on a somewhat lighter note: Simon was talking about Jesus' birthday and what we could give him as presents. I was trying to bring us around to, hey why not behave as Jesus would want us to behave (unselfish, kind, yadda yadda) and say prayers for other people and not just ourselves and that's probably what Jesus would like best. Simon was still stuck on the idea of a physical present (see, this is what happens … ) and I said to Matt yeah, it always sucks when your birthday is on Christmas 'cause you get all the lousy presents that are "for both days." So, thinking about Jesus as the first victim of a Christmas birthday made me smile. Please note, this is Joanna's thought, not Pastor Matt's. 

I have, I think, seen only one episode of the HBO series Oz. It premiered when I was in college and I remember catching it when I was home on break or a weekend. One episode of a show, 16 years ago, and every time I hear Genesis chapter 1, this is what I think of: 

• Augustus Hill: "And God said, let there be light, and there was light. But, that's easy for God to say, he was God. But for the rest of us, finding the light takes time. A lifetime."

And looking it up to get it right, I came across tons of other Oz quotes that are relevant to the matter at hand (light/dark/seeing God) but this entry is already way too long so I'll just send you to the website: tv.com:  http://www.tv.com/shows/oz/gods-chillin-61317/

And I'm really okay, just sad right now. :)

I Am Not Ashamed, But Maybe You Should Be - Part 5

(IANABMYSB: Part One, Part Two, Part Three, Part Four)

I recently read a lovely little story on NPR's website about the prohibitive cost of diapers for low-income families, the resulting health issues for the babies and toddlers, and a nationwide network of diaper banks, where folks in need can get diapers free. To read the article, click here - it's really pretty short. 

(Again, this is why I am not allowed to read comment threads). A couple of folks seemed to really get what I would consider to be the "point" of the article, that this is a need, we all complain about how much diapers cost but for some folks it is huge deal, and it's nice that there are folks out in the world who are trying to address the need. One person in particular said yes, cloth diapers are really ideal but folks may not realize that even in difficult circumstance it is possible to wash them, and perhaps we can more toward educating people. A few took the opportunity to vilify disposable diapers. 

And, this was the first comment to follow the piece, and it had 9 "thumbs up" votes. I have deleted the author's name from this post, but it's right there on the npr.org site for all the world to see. I will hereafter refer to her as "the Lady," because I'm really trying to write this without any profanity. All I can say is, I'm glad I do not know this Lady, I'm glad she is not my mother or my sister or my friend: 

(emphasis near the end: that's mine)

 

• 2 days ago

"As young parents, my spouse and I were quite poor. We were graduate students, lived in the country in a tiny rental house because it's what we could afford. We grew our own food and made our own baby food, etc. etc. Before having our first baby, we accumulated a large enough supply of cloth diapers and received a diaper pail as a gift. We maintained the soiled diapers and diaper pail in accordance with sanitary practices which we took time to learn about and practice. That pail was extremely heavy by the time it was necessary for me to drive the 15 miles each way into town after loading the heavy pail full of wet diapers into the car, the baby and baby equipment, to the Laundromat. I washed the diapers at the laundromat but rarely dried them there. I would load them into a clean receptacle and load the (still heavy but now clean) diapers into the car and drive us back out to our rental spot which had a clothesline outside. There, in all seasons, I would hang the diapers outside to dry. It was all difficult, labor intensive work and required planning ahead and conscientiousness - but those are just a couple of the many important qualities necessary for being a good and responsible parent. My own parents were always very poor. They had five children. My mother would never, ever have re-used a soiled diaper. She would have stayed up at night and hand-washed diapers if need be. There were times when we couldn't afford "feminine hygiene products" and we would use cloth and laundry and labor! This report is just absurd and reflects a kind of helpless, hapless, dependent, irresponsible, whining point of view and probably describes people who should not BE parents at all. Life is not for the lazy and parenting is not for the helpless."

whoo …. …. …. goodness knows I read a lot of crazy stuff online, but I think my mouth was actually hanging open by the end of this. Even a day later I'm at a bit of a loss for words. But here are some. Matt said, "I'm glad her hardscrabble upbringing has led her to be so judgmental." I say:

(Did you also walk 10 miles each way to school and back every day, uphill both ways, in a snowstorm as my Grandpa did? That's kind of what this sounds like)

Since we are talking about mamas and cloth diapers, let me throw my two cents in. When I was about 2 years old, my family was living in a small apartment in a small city. My dad worked his construction job during the day and then went to the plot of land they'd found to build our house in the evening. We ended up moving into the house earlier than planned, before all the indoor plumbing was completed; I believe this is because a super-creepy neighbor in the apartment building was bothering my mom a lot. So when we moved in we had a well with a pump, and an outhouse (suck on that, Lady, we had no indoor plumbing). This meant little to me as I was still in diapers and I have no memory of it, but I'm sure the other members of the family (mom, dad, older brother) were relieved when that was alleviated. It was a long time before we had a washer and even longer for a dryer. My mom, too, schlepped (although this is rural North Carolina, so probably "carried" is better) a stinking pail of diapers to the Laundromat week after week, and we still didn't have a washer long enough that I can remember packing a lunchbox and going with her, so I'm assuming that meant my little sister, who arrived when I was almost 3, was in cloth as well. And, my parents grew a lot of our food, and my mom canned everything she could, and she sewed a lot of our clothing and between her various skills and my dad's, they managed to keep us fed on little money.

And  you know what? My mother would DIE (I mean, she's deceased already, but go with it) - she would absolutely kill herself and die, before she used any of those details to make some other mother feel like crap because they did any of those things differently, much less because they used disposable diapers. She would never ever ever have used any of her life story and choices to imply that the way she did it was better, that everyone should do it that way, or that other choices were somehow "less than." 

Life is not for the lazy and parenting not for the helpless, indeed. Jesus H. Christ - what in the world is that, Lady? We ("we" being "reasonable people") are talking about two pretty specific things here, diapers and how much they cost. I'm glad you have some sort of forum where you can air your superiority, because I can't imagine a person sitting and listening to you actually speaking your point of view for very long, because … it sucks. Sorry, I have a graduate education and a huge vocabulary, but sometimes the simplest phrase is the best. You may be a fine person but you are coming across as a total jerk, and apparently at least a few people agree with you to some extent.

So there are a couple issues here, and because it's me I'll go one by one:

1. Cloth vs. disposable diapers (this is the smokescreen issue here, but it is an issue): I've told you about my mother, Lady, now let me tell you about myself. I am the mother of two small boys, and we used cloth diapers on the older one for the first year. We chose this because we, too, are concerned about the impact of disposables on the environment, and cloth does feel more natural and the boy had hardly any diaper rash whatsoever. But, and, we used a diaper service because we lived in a hippie/yuppie environmentally friendly apartment building and several other families used the same service, and we had the money to do it. Because I worked 45 - 50 hours a week, and my dear husband was working and taking care of the baby 4 days a week, and I was pumping breast milk and there was plenty of laundry anyway, and … yeah. I didn't need the additional hassle.

And my second son? Let me tell you about him; he is the inspiration for this blog. He's now 3 and 1/2 and is doing splendidly, but he was in the NICU for 3 months and had to have open-heart surgery at age 4 months and had a million doctors' appointments and tons of medications and supplemental oxygen and we were exhausted and scared and if some uppity … other mother … had approached me at any point and suggested I "really should be using cloth," I quite possibly would've punched her in the face until she fell down, kicked her until she was unconscious, and perhaps then suffocated her with a Boppy breastfeeding pillow until she was dead. Yes, really. And before someone says, well, that's different, I'm going to go ahead and say, you do not appreciate the crushing stress that chronic, severe poverty can create. And Lady, please don't cite being poor in graduate school because you know everyone's poor in grad school, right? 

Disposable diapers are a modern convenience, one of many. If I were this kind of person, I might ask why you got to use the Laundromat - why weren't you in the creek out back, pounding the little jokers on rocks? That'd be real mothering. There are lots of good things that come with modern parenthood, like cribs your baby won't strangle in and better car seats and carbon monoxide detectors … and diapers that, when they are full of poop, can be folded up and thrown away. 

And, Sister/Lady, we moms and women need to stick together, not turn on one another over something as silly as this. Don't you know that whenever you denigrate one woman "doing it the easy way" and hold up the old-fashioned as the ideal, you're taking us back to when this kind of crap wasn't a choice - it was our duty by virtue of being born XX that we got to spend every waking moment taking care of someone else. 

2. So here's the "But Maybe You Should Be" part:

Lady, you seem to be an absolutely unkind person, and probably not just on this particular subject but on the general subject of what makes someone a good person who deserves to be happy and raise children. At least one other person commented that the solution to not being able to afford diapers is, "maybe don't have children you can't afford." I can't … I can't even really begin to thoroughly address this, I don't know where to start with y'all. There's one idea of, who the hell can afford kids? I mean, really, they are expensive and yes there's the concept of relative poverty and women in lesser-developed countries raise multiple babies and they breastfeed and use cloth diapers because there aren't really any other options for them, but that's not what we're talking about, right? We are talking about judgment and superiority and security/insecurity in the choices you.have.made, not really about the choices any other parent makes. 

Congrats to you, Sister, that you did all this back-breaking work and successfully raised your kid in this particular way. You need to be validated in what you have done, you need to feel it was not just the better choice but obviously the only correct choice, because otherwise … it was all for nothing, right? You coulda gone the easy route with the exact same results, so obviously what you did Has To Matter.  You are obviously A Good Parent.  Congratulations! But you understand that (a) there are approximately 100 million other ways to be a good parent, and (b) even if you are the World's Greatest Mom (you know if you got a coffee mug that said that, it's not real, right? It's not an actual award? :) ), please hear me: that does not make you a better person than someone else. That does not make your life worth more. That does not make God love you any more than Poor Parent with Disposable Diapers X. We are all the same, that's the great thing about living in the United States and/or believing in God, if you do - we are equal in the eyes of the law and God. 

We are all afraid, and a lot of us are afraid all the time. Once you have kids, and you hold a tiny fragile newborn, or an adopted older child with a nightmare history in your arms, it's a long time (if ever) that you feel 100% relaxed again. We make a million decisions about our kids (breastfeeding, immunizations, education, religion and yes, diapering) and ourselves (career, whether to move, how to manage money) and sometimes it turns out horribly and sometimes it turns out awesome and most of the time it's somewhere in between, but really in the end we are just sending the kiddos out into the world every day on a wing and a prayer, hoping like hell they don't get sick or hurt and that they learn how to make good decisions and we do all we can and then realize, shoot, it's not all up to me/them. 

Sometimes the world just does horrible things to you and ultimately, there is sometimes not one single thing you can do about it. Being "a good and responsible parent" is difficult to argue with, but (again) - a - there are lots of different ways to do that and - b -  it is still not a guarantee. God, I wish it were. I wish there were some formula by which you could chose Option A + Option B + Option C and that all equals a kid who is going to complete college and have a career and be a productive American taxpayer, and chances are pretty good that they'll do all that to some measure. But they might not. They might end up with a mental illness or substance abuse problem or do something stupid and go to jail or they might end up getting shot in the face in the first grade a couple of weeks before Christmas - and none of that says anything about anything, other than that "life sucks, sometimes, and terrible things happen." Life is not for the lazy and parenting is not for the helpless. God, what a heartless person you seem to be. 

The reason my Mom was so super-non-judgmental? Something pretty sucky happened to her, when she got pregnant in 1967 at the age of 16. She was treated so poorly and judged so harshly that I think it became sort of her life's work to do the opposite. She was kicked out of high school though she was a straight A student and cheerleader; the father of the baby (my half-brother) was allowed to continue because, well, life in fact is not fair sometimes and though I would contend was as fully responsible as my mom for creating the situation, this was 1967 and he would not be "showing." 

It was only thanks to an understanding school counselor that my mom was allowed to finish high school by correspondence. Her parents eventually kicked her out of the house, they reconciled at some point but in between she was basically all on her own. She eventually worked her way through college and met and married my dad. So she Pulled Herself Up by her Bootstraps, yay! And guess what? Again, she would never hold herself up as some success story, especially if it meant the fact that she ultimately succeeded was used in some way to make some other teen mom (or anyone, for that matter) feel they had to do the same thing. 


My mom and I didn't have many conversations about this experience, but I know the difficulty she encountered was the reason she always immediately called us out for criticizing other people. And I can say with virtually 100% confidence that if you held her and her Pulling Herself Up and her cloth diapers and sewing Halloween costumes and all that up as an example? She would say, "Yes, I did that. But it was so hard, and I was sad and alone and stressed most of the time, and I would've loved some help." She would never use herself as the reason why someone else should be treated, or spoken of, or even thought of, unkindly. So put that in your pipe and smoke it, Lady. I'm tired of talking to you. 

Referral

Nothing new to say, though the contents of this post will lead to some David-related stuff in the future. Check out the other blog: Neonatal Palliative Care - I hope the info is helpful to anyone who has faced this situation.

Things & Stuff in the New Place

Various Updates

Simon has started the first grade at our local elementary school. I never would've predicted this, but I kind of miss the "Learning Log" method of communication his Kindergarten teacher used. I don't feel we have a real sense of what he's doing during the day or week, though the teacher sends home a short newsletter each Monday with what they will focus on during the coming week. Simon has not given a ton of specifics; I've tried not to ask a million questions but info is coming out only in tiny bits and pieces. He reports he's made several friends, boys and girls; two boys and one girl supposedly live in our neighborhood. One of these, a boy in Kindergarten, has been confirmed by meeting kiddo and mom. After the first week of settling in, Simon has started riding the school bus, which I was really worried about initially (especially when I was waiting for him at the stop on the afternoon of the first day and he wasn't on the bus, but that mix-up was quickly cleared up) but he appears to be enjoying it.

I cannot imagine David riding the bus one day; I'm glad he would have Simon to look out for him. For me, elementary school bus riding was fine; we had a really strict driver and assigned seats and all was well. Middle school was awful - we had this totally useless older man as our driver and he basically never intervened in anything. This culminated in me coming home from school one day in 7th or 8th grade, in tears because some same-age boys had been yelling to the male driver & passengers of a car following the bus, "something about them having sex with me" is what I remember sobbing to my Mom. I was distraught but didn't really want her to call the school because I was afraid that after whatever suspension might occur the problem would only get worse. She did call, and I don't know what happened exactly, but it did not happen again. Then in high school, the bus seemed to be some sort of DMZ/No-Man's-Land where anything got swapped around (cigarettes, girlie magazines), but everyone pretty much left everybody else alone.

I don't think we had any "students with special needs" on our bus; this was likely an era when anyone with any disability was relegated to the "short bus" and isolated in Special Education classes all day and you never saw them. I am generally really nervous about mainstreaming David, although I know it's the right thing to do - I'm scared to death he's going to be bullied. Matt is much more optimistic about this than I (though I'm sure he's worried to a degree); he points out that rather than predicting all the awful things that might happen, we can instead see this as an opportunity to see exactly how great his peers and the school staff can be - perhaps any teasing will be minimal, and if/when it does happen his brother and friends will take up for him in a way that is of course non-violent and yet takes care of business.

On this note, we did receive some reassurance this week in a little guy named Nate, who is in the first grade at Simon's school but in a different classroom. Nate has Down syndrome, and we'd been referred to speak with him mom almost as soon as we moved here but dragged our feet about it (see "Mac & Cheese & Overwhelm-ment" for our history on this). Matt finally called her on Monday and had a delightful conversation; she had so much information that he ended up taking a lot of notes. Then on Tuesday when we went to the school to sign Simon up for Cub Scouts, there were Nate & mom and they were equally delightful in person. I recognized Nate because his mom'd told Matt there was a photo of him on the local Down syndrome association's website and we checked it out. He's a pretty cute guy, a year older than Sy and maybe a couple inches taller (this indicates how short Simon is, kids with DS are typically pretty small). The first thing Nate did at the Cub Scout thing was to run over to one of the displays and begin flipping through a scrapbook, pointing at photos of a camping trip and saying (excitedly, clearly), "Mom! I want to do this!" He played with Simon while I filled out forms and talked to his mom - they were racing cars around with a couple of other kids. Seeing his "regular kid-dom" was awesome. I don't know if he rides the bus or not, or if he's had many problems in the school, but there should be the opportunity to follow up.

David, of course, is delighting and amazing his entire preschool. We had a scare (on the same day Simon wasn't on the bus) when David slipped out of the school through a door that was propped open, during the Early Pickup time (some kids are done at 12:15, David & others go until 3:15). The staff didn't realize it, and another parent brought him back inside ...  I ... I'm glad Matt was the one to pick up David that day, and that he was the one to be informed about this by the staff. We did not ask where he was (how far he got) because we didn't really want to know. When Matt initially told me, it was easy to accept the news calmly because it was long over and David was fine. But of course the longer I thought about it the more upset I became, imagining various horrible outcomes. And they are horrible - the Quaker meeting house where the preschool is housed is at the intersection of two of the busier streets in the New City, and .... even thinking about him being in the parking lot, out back of the building, was bad enough. I mean, imagine, right? My beautiful 3-1/2 year old child with Down syndrome, wandering around. Jesus.

Matt said the preschool staff were "appropriately mortified" at what happened, and that by the time he picked up David they had already completely revised the way they will do pickup from now on. I mean, I can (sort of) see how it happened - I've never been there at early pickup, but based on later pickup and hey, it's a daycare, there are kids and parents and backpacks and lunchboxes and everything. So now everyone will simply be much more centrally located, and one of the staff people will always hold David in her arms.

Matt and I have (pretty much) gotten to where we can joke about it: (1) Matt has a little joke about entering the Joanna Realm of Reasoning, in which I propose that under certain conditions we should get things for free. When our landlord has not cashed our June rent check by the time the July one is due, June's should get to roll over. When the pediatric anesthesiologist pokes a hole (okay, makes a tiny scratch) inserting a tube in David's throat before his heart surgery, we should not have to pay for that portion of her time or any of the supplies. And, every time you let our child wander out of his preschool we should get $100 off that month's tuition - hey, it's an expensive school, so ... (2) A couple days after it happened there was early dismissal and the afternoon was devoted to parent conferences focusing on "hopes and dreams" for each student. Matt and I were pre-conferencing and he asked if I had anything in particular I wanted to ask them about. My response: "My hope? That they don't lose him again. My dream? That they don't lose him again."

Other than that (!) we are quite pleased with the school and David's new speech therapist and Special Educator, who each visit twice each week. The speech therapist is really emphasizing signs over spoken language at this point, and David is picking up quite a few: apple, cracker, food/eat. His signs for "more" and "please" are now much more distinct ... we think he is beginning to recognize the colors red and blue, and the shape of a circle. The other day at church we were in an office that has a painting of a single foot, with the caption Step out in Faith (or something like that), and David pointed right at it and said "foot," as clearly as you could hope to hear. He does this a lot - he'll either parrot something we say, or label something and we're so excited, and then he never does it again. Oh well. He's coming right along :)

I am officially on the job search trail; I've come across 2 possibilities that are pretty exciting but both long shots a couple that are okay and reasonable to hope to get but I haven't heard anything back yet, and about a thousand that I am totally unexcited about, but which I could probably get hired for pretty easily. Stay tuned ...

Some Tough Shots

As I posted on facebook last week, I kind of forgot about the 3-year anniversary of David's open-heart surgery (8/12/2013). I'd thought about it the week before, but then we went to the beach and all, and it completely slipped my mind until 8/12, when I had to fill out some paperwork for David's new preschool and both enter the date and write "Repaired AV Canal defect" on a list of medical conditions.  I don't have a lot new to say, so here are some flashbacks:

(To read last year's surgery entry, click here - it's pretty good, which I can say because it's mostly stuff from an article I did not write)

And here's some other stuff I have written about the surgery:

Shiphrah, Puah, David Moses and the Red Line (this was my first "real" writing, I think, and I still think it's about the best thing I've written, or at least it's my favorite)

Exodus Things and Stuff, Parts I and II

Misgivings and Doubts

Tubes and Probes and Wiggling

After Surgery Stress and Letdown and More Post-Surgery Letdown

Hey Hey Dr. K (a letter to David's heart surgeon) and A Quick Response (in which I explore the differences between the words "sheepish" and "sheepless")

And (WARNING) here are some previously-unreleased photos. Difficult to see, yes:

(These first 3 are the day and evening before the surgery)
(he looks so small and lonely in this shot to me)

Yes, this is horrible. But we were so glad he was alive, we didn't really notice at the time. 

This is a few days later - he was in the hospital a total of 7 days. Pretty amazing. 

So he's doing so much better now, these seem ancient. And I did end up making a cake, but the photos are still on my phone and I'll publish them soon.

Thanks again to everyone: Dr. K, Dr. Aaron, all the nurses and other docs, and all our family, friends, and complete strangers who have prayed for and supported us these 3.5 years. God bless.

What is there NOT to be afraid of?

All righty. We're here in the New City, obviously, except at the exact instant I'm writing this we aren't, we're in Wilmington (NC). What I mean to say is, we continue to settle in to the New City and we're taking a break to visit some friends of Matt's from college. This is nearly a yearly (rhyme) event, about the closest we've gotten to vacations since Simon was born, and certainly since David arrived. It is a trip to the beach, great company, and a free place to stay so that's no complaint, but I guess it'd be nice to do other things in addition.

At the Bog Park in Greensboro NC

A bazillion turtles to feed in Wilmington

When we made the trip last August, I had this really great, peaceful experience with David at a Starbucks where we were hanging out waiting on the others (see Simple Happiness). I thought about repeating that exact trip this time around, even though I knew it wouldn't be the same, but I guess I was simply curious to see what it would be like. But the opportunity didn't really present itself, and David and I have gotten to hang out a lot, snuggle a lot, and generally enjoy one another, so that's okay. It was nice to be reminded that this time last year, David was not yet walking - that is unbelievable, it seems I've been chasing him everywhere for at least half my life, but that's correct, he didn't start walking until last September. 

David still has not been sold on the wonders of the ocean, and he protested a lot whenever we tried to put him down on the sand or even take him into inch-high water while holding him clamped around our waists. We went swimming in two different pools, the first he liked about as much as the ocean, but the 2nd one he did eventually warm up to. What made the 2nd one nice for Matt and me was, there was another little boy there who had Down syndrome. We got to meet his mom, dad, and older sister. I'm pretty sure his mom said he will be turning 5 very shortly, so he's got a year and a half on David. This little guy has been through the medical wringer worse than David, having spent a total of about 2 of his 5 years in the hospital (I think that's what the mom said); in addition to whatever else, he had leukemia (there is a type of leukemia that kids with Down syndrome are prone to getting, generally it is kind of harmless and self-resolving but that does not seem to have been the case here). While it was nice to talk to his family members, I got the most out of seeing the kid himself - he was pretty good-sized, not scared of the water at all, jumped off the side several times and was paddling around, strong and healthy.

David at the Bog Park, tracking a bug

This would be David, NOT enjoying the water

You know how when there's a big disaster or something and you are told to
"shelter in place?" Due to David's reluctance to move down to any other
part of the beach, this is "Sand-Castle-ing in Place."

Note: when I say "we" went swimming, that means that Matt and the boys went swimming and I provided support from a deck chair. It's not that I don't like to swim, I do (though I freely admit to being terrified to go any deeper than my knees into the ocean, I can swim in a pool) … it just seems like a lot of trouble, aside from swimsuit issues.

Note: I once confessed to a friend that I am really leery of the ocean, and she said, "What is there to be afraid of?" What is there to be afraid of? What is there NOT to be afraid of? (1) sharks (2) rip currents (3) sharp coral and shells to cut your feet on and draw said sharks (4) jellyfish (5) tidal waves (6) stingrays (7) other causes of drowning (8) seaweed brushing against your leg and you thinking it is a shark. Etc. I love aquariums, I am fascinated by sea life, but I do not need to actually touch it. 

Simon's another year older too; it's funny to watch him interacting with the (slightly) older kids, wanting to be like them and adopting all their little phrases and mannerisms. It's also a relief that he's more independent; we don't feel the need to check on him nearly as often and he's just generally managing himself better. But there were also plenty of reminders he is still a little kid (Shh! Don't tell him, "younger kid" is what we say), especially when he tripped over some cypress knees/roots and skinned up his arm - he needed me to hold him and kiss it better. That was nice.

Simon at the Bog Park

Yes, that sign says there are ALLIGATORS in this lake. We looked
for a long time, but never saw any. Oh, and (9) alligators and crocodiles. And caimans,
though I know they are small. Also piranhas, though I guess they live in rivers.

I'm just glad he has his swim trunks on frontwards. And
FYI that lady in the black swimsuit is not me.

Postscript: Now we're home, kind of exhausted. We're getting ready for the school year to begin - David starts his new preschool on 8/21, Simon begins the 1st grade on 8/26, and after that I'll start job-hunting - I'm hoping for part-time, mornings and early-afternoons only. 

Settling In

Our little family has been thoroughly welcomed by our New Church. We made our official first appearance this past Sunday, with Matt assisting with some prayers and communion, and Simon and I standing briefly to say "hi" to the entire congregation. Although the role of the pastor's spouse has thankfully changed a lot over the years (in the Methodist church anyway), it's still a role, I suppose - I don't know tons of other jobs where your spouse gets introduced to 300+ of your colleagues/clients all at once, and Matt's "clergy profile" on the Conference website lists me as his spouse, right after the name of the seminary he attended. That's weird, right? I can't imagine a professional profile of me, or of many other jobs, where not just your marital status but the name of your spouse is listed. I do feel "watched" a lot, right now because it's new I'm conscious of it but soon I guess my usual personality of "[forget] it" will take over ... :) It was a great day, with a cookout and celebration afterward - I would guess there are also not many professions where your official welcome comes with a big waterslide and a cornhole tournament on the front lawn. I'm excited about the new placement, and I hope it's as good for the New Church as I think it will be for us.