Things Fall Apart

I never did like that book. I remember actually being quite scarred by it. Yet, its title keeps running through my mind lately because, well, things do. It is not just my story to tell, so I won't elaborate here, but rest assured that e is doing ok. He had a little trip to the ED at CHOP recently, but he is all right. He has been responding strangely to motion while lying prone on his back--so if he's being carried on his back in someone's arms, or in his car seat, sometimes he does this strange thing where he stiffens, thrashes around, looks frightened, and looks like he is struggling to breathe. Usually, if I just change his position, that is enough to fix it. However, last Tuesday, I was carrying him in his car seat across the street while holding the hands of the other two, so when he started his little fit I couldn't stop right away to fix it. By the time I got to the other side of the road, he had gone pale and then started to turn a little blue around the mouth. He came out of it quickly and is totally fine as long as I don't move him in the wrong way, but the pediatrician said any amount of blue is too much blue, so off we went to CHOP. They couldn't figure out what had caused it and wanted to admit him for further testing. I had a conversation with the doctor and he agreed that I could take him home and do the testing as an out patient. He was supposed to see the cardiologist again on Monday, but, well, there was a hurricane. We'll have to reschedule that. Our other upcoming appointments include neurology, ENT, a neonatal/developmental follow-up program, speech/language, another surgeon appointment, and a few others I can't remember just now. He has also begun meeting with a hearing specialist once each week in addition to his PT. He continues to be just as sweet as ever. He is so precious. I am grateful for him so many times each day.

As things fall apart, I am reminded of the importance of gratitude and the power it has to change your outlook and therefore the feelings you live with each day. A kind friend mentioned the other day a study done that asked one group of people to write five positive things about each day for a given period of time, another group just to write five any kind of things each day, and another group to write five negative things. There were profound and measurable benefits of gratitude/perspective. I am endeavoring to take time each day to look hard for good. Sometimes I feel like I need to swim in a pool of nasty to pick the shiny bits up off the bottom, but I know eventually the pool of nasty will drain away and I will be left with the shiny bits I have collected and cleaned off. Here goes for today:

I am grateful that neither us nor our home was damaged in the hurricane. (Though 'damage' has become E's new favorite word. If we drive by uprooted trees or snapped telephone poles, he points and shouts, 'look at that damage!' He was the only one disappointed we didn't have any of our own.)

I am grateful for so many wonderful friends who love me and help me in ways I might not even think of on my own.

I am grateful for my kids and the way they uplift me. Every time I come near e he smiles and kicks. I can't help but smile back.

I am grateful for electricity and that ours works again.

I am grateful for things to smile about--two are:
    To wrap up our geology unit, we built and erupted a volcano, made lava cake, and watched a Magic School Bus episode about volcanoes. With the impending hurricane, E had a little trouble distinguishing between the two and decided to call them both 'hurricanoes.' Now, if anyone says either 'volcano' or 'hurricane' in front of him, he will correct them and say, 'No, you have to say 'hurricano''
    While staying at a friend's house this summer, E was talking to the dad of the family and wanted to call him by name. He began, "Mister...., Sir....." and then had to ask "What's your name?" The friend replied "You can just call me Mister Sir." E took him at his word. Even after being told the correct name, E still insists on calling him Mister Sir.

Adventures in Homeschooling

So last month we had our first go at homeschooling kindergarten style. We had a farm theme. We learned about how farms work and the kind of work that has to be done on a farm. We also learned about how all of our food comes in one way or another from a farm. On our first farm day, we opened up our refrigerator and took a look inside. I asked the kids if they could find anything that did not come from a farm. They tried really hard, but couldn't do it. We learned about all kinds of different animals and what we get from them--meat, eggs, milk, cheese, leather, wool. We also learned about vegetables--seed vegetables, stem vegetables, leaf vegetables, root vegetables, tuber vegetables, flower bud vegetables, fruit vegetables...all sorts of vegetables. I learned things I didn't know before. I made a fun vegetable game that was sort of a combo between bingo and memory. We also had a grain day. We touched, smelled, and tasted all sorts of different grains. We also made some bread. We did lots of farm/animal/vegetable crafts. I made a big farm play set and we did a Montessori-inspired grammar unit. We learned about nouns, verbs, and adjectives (I thought I would leave adverbs, etc. for later...). We also did some skip counting with farm objects. We learned about farm machines and the things they are used for. E especially liked this part. Spending the last week of the month in NH has allowed us to have some hands-on farm experiences to top it all off. We took a ride on Grampa's tractor (E was disappointed that he did not have a combine.) We took a trip to Billings Farm in Woodstock VT (http://www.billingsfarm.org/) (a childhood school field trip destination for me in years gone by. it brought back memories...). We also learned about how the land where Grammy and Grampa live used to be a big cow pasture. We also walked down the road and looked at the cows.

This month, we will be learning about geology. Today we visited the Quechee Gorge (http://www.quecheegorge.com/). We had a nice hike in the autumn woods and learned about how running water can cut through rocks. We also learned about how all of New England used to be covered in glaciers and how that changed the landscape.  Tomorrow we will make our own erosion project. We will probably work in a little bit of a cookery lesson by making some mud pies at the end. Later this week we are hoping to take a trip to the Polar Caves (http://www.polarcaves.com/).

Our home school curriculum continues like this through the year. I have a theme for each month and I try to work in a little math and reading stuff in ways that fit in. We also have 'folder time' where I works on different worksheets--some that I make and some that I get from books. She gets a kick out of moving things from the 'to do' side of her special folder to the 'done' side. She has special colored pencils for her special folder work. It is all very exciting. Our daily schedule looks something like this:

We have 'centers' while I put e down for his morning nap. I usually set out a couple of activities that have something to do with our theme and hope they don't pummel each other too much while I am taking care of e upstairs. This goes with only varying degrees of success.

After I am done putting e down for his nap, we have 'carpet time.' We do some fun exercises (hippo hops, shark squats, frog jumps...our house is pretty small, our yard is pretty small. I find the kids benefit from a little extra physical activty. Especially in the winter.) then we do our calendar (day, date, season, weather) and we talk about our topic for the day. We read some stories that fit in with the theme and sometimes sing a song or do a little activity.

Then we have a snack. Very important.

After that, we have our morning activity. This usually involves some sort of little lesson and a craft or some other project.

Then we have some play time. e wakes up from his nap. We have lunch.

After lunch, we usually have some active time. Sometimes we play outside, go to the park, or walk to the river or the library or something.

Next, it is time for E and e to have their naps. While they are down I try to do a (short) slightly more advanced lesson with I. This is often when we do our math stuff. This is also when I has her folder time. I also usually scramble around to make a clean spot in my house, make some effort at dinner, make phone calls to arrange things for e, or any of the other things I don't have enough time for.

As I said, we achieve varying levels of success with this and other things. I am satisfied if we get about three days each week of this. With e's schedule and other things we get a little busy sometimes. Some days it feels great and is really exciting. Other days, I wonder how we will ever survive a whole school year of this. We'll see how it goes.

For now, we are enjoying our field trips and mud pies!

remote access

Just a couple of medical tid-bits RE Sir e that I neglected to include: I mentioned before the pediatrician's concern about hydrocephalus, and then I think I mentioned that we weren't so worried about that anymore, but I think I did not say why. So here's that part: e's brain is smaller than it should be and underdeveloped (something we have known since the CHOP neurosurg people looked at his MRI). Apparently, the extra fluid in his noggin making his fontanel full is the body's way of protecting the little brain. It fills up the extra spaces with fluid. The pediatrician delivered this news and was worried I would be quite upset. She was surprised when I said I thought it was good news. We already knew about the brain issues, I was just glad to cross hydrocephalus firmly off my list of things to worry about right now. Just a few days before that, e had his initial evaluation for Early Intervention services. He scored about like a 1-month old on the motor development scale but was about a 5-month-old on cognitive skills. This lined up with my assessment of him as well, so I wasn't very surprised. They actually had a better opinion of his cognitive development than I did--they have a whole host of babies to compare him to. I only have my two other kids. I'll go with their opinion on this one for now.--so that part was heartening. The Early Intervention people, like the pediatrician, were surprised by my reactions. They also keep asking questions like "what would you like to see e accomplish?" I am never sure how to answer these questions. No one, not even the fancy CHOP geneticists, know what he is capable of. How can I arbitrarily say what I would like to see him do? And what use would it be to spend time on things like that anyway? I just want to surround him with whatever supports I can find in order that he can achieve whatever it is he is going to achieve. I'm sure there will be discouraging things and alarming times. There will probably be times when we will have to come to terms with something that e just can't do. That's alright. e is a gift. I'm grateful to have him.

The kids continue to enjoy the dirt, the trees, and the space here in NH. I am rediscovering all the things I have missed--such as the sound of the wind in a natural setting rather than in a man-made one. It sounds much nicer going through trees instead of whipping around buildings. It is also nice to hear it unadulterated by traffic and people noise. It has the same sort of calming affect I find in the sound and motion of open water. I have finally convinced E that it is ok to let go of my hand when we go for walks on the road. (It is a dirt road. Cars are a rare occurrence. It is quiet enough that you can hear them coming in plenty of time to move.) It is so nice to be here. I am still totally exhausted, though. E won't stay in his bed, I is up to her usual tricks, e needs attention in the night and early mornings, all this dirt playing necessitates more baths and washing up (totally worth it)...but such is the life of a parent, yes? In the words of Bon Jovi, I'll sleep when I'm dead. Tomorrow we are going to take a trip to a farm. I wish we had brought our galoshes....

There is a Balm in Gilead to heal a wounded soul.

We have escaped. Over the last year, I had daydreamed about going away for a few weeks back up to 'home' in New Hampshire. Originally, I had thought summer time would be good for that. e had other plans, though. Things went on, other things developed, and I had actually decided it would be better NOT to take the trip--but then was persuaded otherwise. Aside from the things that make it hard to be away, it is lovely to be here. I had to exert a considerable effort to arrange e's medical schedule such that pressing things got done before we left, a vacation-sized space was left in the middle, and then the rest of the things are scheduled nicely for when we get back. The result was a frenzied 5 weeks, two weeks of peace, and then another frenzied 8+ weeks after we get back. I am grateful for the break, though. We had a last-minute trip to CHOP the day before we left to upgrade to a slightly larger G Tube, but we successfully made a break for it after that. Poor baby e still struggles with his retching. I talked with the surgical nurse practitioner today about it and I'm not sure there are very many more options that can be pursued remotely. I will try fiddling a little bit with his feeds and I may have to start eliminating things from my diet as well. We shall see. In addition to being unpleasant, this retching business poses two other concerns--first, if he does actually bring anything up during these events, he runs the risk of aspirating. Second, the vigor of the retching can sometimes damage the Nissen, which could make it so he would need it surgically repaired. We would like to avoid both of those things. The poor sweet baby still doesn't complain, though, even when his little body is wracked with a fit of retches--his face gets all red and he gets all clammy. It is very sad, but he just looks around and waits for it to stop. When it is over it is as though nothing happened. Such a sweet little person.

Aside from that, we are all enjoying our break. Husband is still stuck in the Philly area for work--poor guy had to use most of his vacation time for surgeries and other hospital things this year. Not much fun. He does get to come up for a weekend at the end, though, and will bring us back down to our paved paradise at that time. Presently, 4/5 of our family are enjoying being in the clean and the quiet. The air is neither polluted by hoards of people, cars, and businesses nor clouded with incessant noise. The dirt is just dirt. Clean and nice. Not tainted with people filth. Just dirt. I and E are having a BLAST running, digging, running, exploring, running, climbing, and running. I really forgot how wonderful it is to live in a place like this. There is something of a balm in Gilead here for me. I can expand. I can breathe. I have discovered that, after this frightful year of ours, I am in dire need of convalescing--just as one who has had a long illness. My soul is chapped and raw. The fresh air, living earth, rustling trees, and slanting autumn sunshine are very soothing to it.

More to come RE our autumnal New England romp, but for now just one funny story:

E's most favorite thing to do here is to dig. He digs with his hands (evidenced by his dark brown fingernails), with trucks, with rocks, with shovels, with his whole body. He spent 4 hours one day just digging. It has been really dry this year, so the dirt is rather dusty. This means that fine dirt particulates end up in hair, ears, eyes, noses, mouths, and streaked all over faces. Grammy one day commented on his smudged visage. E replied matter-of-factly, "sometimes you have to get dirty to get the job done." We're still trying to figure out where he got that one. Perhaps from Grampa or from Thomas the Tank Engine?

G Tube life

After our 5-month NICU adventure, it seems that no matter where I go, I see kids who are using the support of some device I learned about while in the hospital. We learned about LOTS of things there, and I am very happy that we have so few of them here at our house. We are getting the hang of this G Tube business, I think, and his heart monitor has not had too many false alarms (only once when the leads were loose) and had provided us with considerable peace of mind. All things considered, e is really quite well off. We were at CHOP again on Thursday, and he was able to get his hearing aids for the first time. He can definitely hear without them, but I can already see that they make a difference for him. As soon as we put them in, he perked up and started talking more than usual. We are having some issues with them in getting the feedback under control, but once we get that sorted I think they will be a great asset to him. In case you are curious about e and his accessories, here is some info about how his G Tube works and fits into our daily lives. (I'll put up some pictures eventually)

The G Tube is actually a little cap-looking thing, sort of like the thing you blow into on floaty toys or a blow up beach ball. The "extension set" is a tube that clicks onto the G Tube opening and twists into place. There is a clamp and two ports on the end of it. His food plugs into the larger port and medicine can be injected into the smaller one. It has to be 'primed,' or filled with water before it is connected so that when the food is hooked up it doesn't send all the air that was in the tube into his belly. His food gets put into a bag with a long tube and a little contraption that gets plugged into a pump which meets out the milk at a slow pace which allows him to digest it a bit better. Some kids with G Tubes can be fed 'by gravity'--where the food is just put in a syringe, attached to the extension set, suspended above the baby, and allowed to run in at whatever velocity is permitted by the tubing. e can't quite handle that, so he gets his food from the pump. Each 'bolus' feed during the day takes about 45 minutes. He eats at 8a, 11a, 2p, and 5p. Before and after every feed, we have to 'vent' him, wherein we connect his extension set to an open syringe and suspend it above him in order for him to get the extra air out of his belly. Because of his Nissen fundoplication, he has trouble burping like a normal baby would. This 'venting' business allows him to get the bubbles out. We have referred to it before as his 'Freud time'--he lies down and 'vents.' Get it? Ha. We crack us up. His G Tube site has healed up really well, so all we need to do to care for it is keep it clean and dry. A few swabs with Q Tips each day does the trick. It is also permissible for it to be submerged, so he is allowed to have baths (much to his chagrin). Also because of his fundoplication, e is not able to put enough food in his belly during the day in order to sustain himself. Therefore, he is fed continuously through the night as well. This 'continuous feed' begins at 8pm. We have to change the rate and dose settings on the pump each night and morning. Overnight, he gets 440 mL over 10 hours, so he is hooked up to his food from 8p to 6a. It is not ok to leave the breast milk out all night, so we have to pour in fresh stuff around midnight and then we just let the rest run till morning. We are technically supposed to change it every 4 hours, but going 6 doesn't seem to have caused any problems. He gets a fresh extension set once every week and a fresh feed bag each morning. His G Tube needs to be replaced every so often as well. Eventually I will be able to do that at home, but the first one will be done by the surgeon. We are slowly getting the hang of things. I have learned some tricks to make feeding him on the go a little easier, and I have great hope that this will all someday feel manageable. We are still working to get his retching under control. This sometimes alarms people when we are out in public. Poor baby. It can't be nice for him, either. I am grateful to know about some of the things we can feel grateful NOT to have, and I am grateful for the aids he does have that make his life possible. 

The week in brief

I and E were playing in the living room this past week while I was doing some things in the kitchen. The couch was a ship (it has been many things in its 25 year life...and it shows...). They had collected all the toy food from our pretend kitchen as well as the two big Melissa and Doug chopping knives we have, several books, stuffed animals, cars, trains, and other things that I am still finding in the cushions...they were sailing away on the ocean. I observed this exchange:

I: "There is a shark! Quick, E, jump in and battle it!" (handing him a knife)
E: (takes the knife, looks warily in the 'water') "What if I get boo boos?"
I: "That's what happens in battles. You'll be fine."
E: "But I'll get boo boos."
I: "I'll wipe the blood off later. You'll be fine. Now get in there and bop it on the head."
E: (Still regarding the 'water' with uncertainty) "Ummmm...no way."
I: (Sighing exasperatedly) "Fine! I'll do it. Give me the knife!"
      (I snatches knife, leaps off the couch/ship, 'battles' the 'shark', and turns to climb back up out of the 'water.')
I: "See?! I fixed it. I'm fine. No boo boos."

I was proud of E for taking a stand, and I was proud of I for jumping in instead of waiting around to be saved. Not to mention the fact that this little game of theirs lasted a good 15 or 20 minutes before anyone screamed at/hit/pushed/kicked anyone else. Not that any of those things ever happen in our house. Ever.


I got a $7 haircut last week. Not something I would recommend. I might have to go and buy a real haircut now to fix it. Sometimes I envy Husband's hairdo.


In e news, we have been cleared for now of imminent concerns RE hydrocephalus. Phew. Our pediatrician spoke with the neurosurgeon and clarified some of the instructions. It sounds like e's fontanel could be full due to some of the other abnormalities in his brain. (About which I will gain further clarification at our next Peds appointment.) A CT scan will be planned at some point in the next month or two. Until then and as long as none of the other symptoms of hydrocephalus show up, we can cross that off our list of things to fret about this week.

Special.

I've always been especially afraid of having a child with special needs. I've looked at other parents in that situation, and wondered--how do they do it? Parenting in and of itself is plenty difficult--when a kid needs more, everything is more, harder, and longer.

Because of my faith, I believe that God talks to people. This can be a dramatic incident, but usually it's just a feeling or a thought or a collection of circumstances that helps you to see something differently. I had a few of these experiences before e was born--some of them before I even knew I was pregnant:

First, I took I and E to a little music event at Barnes and Noble.  One of the songs went something like this "I may not look or learn just like you. My voice may not sound just like yours does. But I have feelings just like you, so smile and say hello." During that song, I experienced the feeling I have learned is one of the ways God talks to me. I didn't understand exactly what he was trying to say at that point, but when I arrived home that same day, our new church magazine had arrived. There were three separate stories about children with special needs--two written by parents and one by a sibling. That feeling again. I began to worry. Days later, I learned I was pregnant. "Oh, boy." I thought.

Things progressed, ultrasounds were had, frightful things said by doctors. When we first heard the news, I was frightened, but I found myself completely unsurprised. I wasn't sure how I was going to handle whatever was coming--I felt totally overwhelmed parenting my two other children already. It was a long process to get to a place of peace and acceptance, but it did come.

Another time before e was born--I don't know if it was before or after I learned of the pregnancy--we were visiting the aquarium and I saw in the cafeteria a girl--maybe about 17 or 18--who was in a wheelchair and entirely dependent on others. I noticed that her hair was neatly braided, and someone (perhaps her mother?) was lovingly and carefully feeding her with a spoon. The girl had some trouble keeping the food in her mouth, and each time some spilled out the person feeding her would gently wipe her clean again, never allowing her to remain a mess--and she seemed very happy to be doing so. The feeling again.

In a general conference session just after e's birth, this quote was read twice: “some of the sweetest spirits are housed in frail frames^" In our scriptures, it is written: "Remember the ^aworth of ^bsouls is great in the sight of God" I am beginning to get it. My perspective has changed/is changing.  I am aware now of being afforded a privilege in this. I hope I can be worthy of it.

Swap!

The other day at the library, I let E hold the receipt with all our due dates on it. He immediately started swinging it around and shouting "swap!" at things. I did my best to herd him out the door without too much damage, but as I was opening the doors with e in arms (they really need one of those automatic open buttons...) he ran up to this 10ish year-old boy standing nearby and repeatedly "swapped" him with the receipt. E then came obediently back and calmly reported "I swapped him." The boy had a very offended look on his face.

I've had earned a new insult to my singing from Isabel: This morning it was "Uh...Mom? My brain is getting tired from your singing."

In other news, Sir e is still doing well. His retching is a little more under control now, though he has had some sturdy bouts recently. We continue to work on it. He seems to be growing much better at home. It takes fewer calories here. He has been pushing with his feet a little lately. He will have his first meeting with the early intervention people soon. He is so sweet and happy. It is so nice to have him home with us.

Sir e has something he would like to say...

finding the new normal

It has occurred to me that if we were to add two to our dependents (most likely the furry, four-legged sort at this point), and if we were to give them names that started with O and I, respectively, we could have our own E I E I O. This will be a considerable point on the side in favor of getting pets--but I'll still do only one kind of poop at a time, so it will have to wait.

Yesterday was a better day than the one before. We managed a successful grocery shopping trip with no major incidents--personal or mechanical. My mom got me an ergo baby carrier when e was born. I love it. I can put e in it and keep him comfortable and happy for an entire trip through the grocery store. Meanwhile, I am pretty comfortable and happy myself--a big change from all the other baby carriers I've tried. Anyway, with e in there, E in the cart and I walking alongside me (yes, I do see the grammatical issues arising with this configuration of code names), we made it through with E having only one tantrum, I not having any, and e only a little sour every now and then. It's funny, e looks like a delightfully happy, healthy newborn. I find people here are a little more overtly friendly to and interested in children at grocery stores than I am accustomed to (another benefit of the ergo--it keeps baby e safely sequestered). So, when these overtly friendly and curious people confront me with questions and comments about my baby "He's so cute! How old is he?" and I answer "5 months" they look very puzzled and usually say something about how small he is. This doesn't really bother me. He IS small. But I'm never sure what to say. I sometimes just say "Yes, he is" and move on. Other times I try to explain "He spent most of those 5 months in the hospital" but then I find people usually feel bad and awkward about having said something about his size and sometimes I end up getting stuck in a longer conversation (Time is precious when shopping with children. One must move along.) I will keep experimenting. Any suggestions?

E has been having a little well-deserved trouble adjusting to big-brotherdom. Yesterday he hit e in the face with his bag of pretzels. I took him aside and told him that I knew he was a good and kind person and it made me sad when he did unkind things. He smiled, hugged me, and went to apologize to baby e.  I will try to remember that one when many future other ones don't end so well!

A friend has taken I and E to her house to play today (thank you!!) It has been so helpful. I have gotten a few things done, and had some very enjoyable quiet moments with e. (though I suppose most of his moments are quiet ones...). He seemed to have slightly more success with his tummy time today. Instead of just rubbing his face on the blanket, he was actually able to bob it up a little every now and then. He has also been chewing on his fingers a little more.

My goal for this afternoon: Attack teetering tower of messiness on my desk. Find property tax bill. Maybe even get it paid.

decompression

Today was one of those hyperventilateicantdothis sort of days. On my list of frets today:

e is so behind developmentally, and I can't find much time in a day to work with him on improving.
E will be three in a couple of months and I haven't even begun potty training him.
I'm not sure how I will sustain I's education at home.
Our porch roof leaks.
The gutters are falling off.
Our bathroom is still only 3/4 finished.
A thousand other house projects are not yet even begun.
My house is a disaster. Perpetually.
I can't seem to find a new routine that works and DOESN'T involve me getting up at 5am.
The laundry is breeding. I swear.
There is a teetering pile of stuff on my desk--somewhere in there are some medical bills and my property taxes. I must find those.
I & E are constantly at each other's throats. 
e's ambiguously full fontanel
Et cetera, et cetera.

I'm pretty sure I'm not the only one who has these sorts of days. Much of this stuff doesn't matter at all, all of it doesn't matter as much as it felt like it did today, and each thing needs to be taken bit by bit. Not all at once. Insert metaphors here about eating a whale, building Rome....etc.

So. Deep breath. Good things:

I built a pretty sweet (if I do say so myself) barn out of cardboard and popsicle sticks that we'll use in our unit on farms next month for our first go at kindergarten. There is a great Montessori approach to teaching grammar for young children involving farms. We're going to give that a try. I'm excited about it. (Yes, I know that's nerdy.)

We made rainbows out of Froot Loops today. E ate more than he glued (and maybe ate a little glue too), but we all learned neat stuff. The kids were excited about having sugary cereal for a snack. I usually try to avoid fluorescent food. I was going to have I practice counting by 5s with the Froot Loops, but they were eaten too quickly.

I have been noticing e pushing more with his feet lately.

No one in our immediate family is currently hospitalized.

And some funny things happened at the end of the day:

Goose made E some soup in our toy kitchen. She served it to him. He tried it. She asked him how it was. 'Fine,' he said. She heaved a big, offended sigh. 'It's better than fine!!' she declared.

E was having a hard afternoon--one of those cryabouteverything sorts of days (I could relate)--he was insisting that I put juice in his milk cup (which still had milk in it). I explained it would be yucky to mix milk and juice together. Goose (still in the toy kitchen) said very patiently to me, "Mom, you should let your children try new things."

During family home evening we were learning about the proverb "A soft answer turneth away wrath" (we may or may not have a problem with that here...) and we were playing a game where we would read about different scenarios and try to think of 'soft answer' ways of responding. One of them was "Your brother or sister throws a book at you" (which may or may not have happened today...twice). "What should you do if that happens?" I asked. "Duck." Was Goose's response.

T-minus 8.5 hours till it all begins again!

Back? To School?

Our neighbor the groundhog is F-A-T. So fat. Fall must be coming. That means this home school thing needs to get started in earnest soon. Goose would benefit tremendously from a good school--but the public one she would go to here has a 1:30 teacher:student ratio, and has some of the worst academic rankings in the region. I think if you trap her in a room with thirty kids, no supervision, and make her learn the alphabet AGAIN, bad things will happen. She reads almost as well as I do (Perhaps even better. She is always correcting me when I say the wrong words when reading a story. Even if she is across the room. She has them all memorized. It's a little freakish.). Her science and math learning are not far behind her reading. I enjoy planning the curriculum and the lessons. I have  a great year lined up for us, but there is no way of recreating the social and emotional learning she could get in a well designed, supportive classroom. The other day she told me "I'm glad we're having kindergarten at home so I don't have to meet new people." Oh, dear. Not to mention there are the added complications of a new baby who has a busier social calendar than most high school girls with all his medical and therapy appointments. To top it all off, I's personality and disposition don't always lend themselves to home schooling--she is much more likely to think a project is a good idea if it's presented by a teacher in a classroom than if it is presented by her mom in the kitchen. I found this great passage in a book a friend sent me while we were in the hospital. This mom had just lost a battle with her children regarding whether a gerbil should accompany them on a visit at the neighbor's house:

"She stood upon her doorstep once more digesting the knowledge that she could not manage her children. Miss Lindsay, she believed, would be more successful. How did these tall, poised women who could command obedience with the lifting of an eyebrow get like they were? Was it something they ate? But would even these olympic ones be able to manage their own children if they had any? Joanna doubted it and went back into the house in a more cheerful frame of mind."

I keep hoping that, by some miracle, the charter school where I is on the waiting list will call me up and say she is next on the list and would we please come tomorrow (she's number 64...not likely). Instead, I'll just have to practice my juggling skills.

As for sir e, he had his first outings this week--aside from grocery stores and doctors' offices--he went to the park and to church. He still isn't sure what to do about the sun. It is rather brighter than any NICU light. He tends to cope by shutting his eyes and going to sleep. Like an opossum. We stayed only for the first part of church this week. Maybe next week we'll try the whole thing. We still have to be pretty neurotic about germs.

The other day at the hospital I saw a bumper sticker that said "If indoor plumbing doesn't bring you happiness, what will?" The editorial bit in the Cooks Illustrated magazine I read this week quoted from Lonesome Dove--"If you want any one thing too badly, it's likely to turn out to be a disappointment. The only healthy way to live life is to learn to like all the little everyday things." This subject is one I have been considering myself for some time. It seems it keeps cropping up. This life is meant to be hard so we can learn things--but in this life we are also meant to have joy. It is possible to feel joy when you are sad and when things are hard and when you are busy and when you are tired. God, when creating the universe, took regular, purposeful moments to "see that it was good." He did this even when he still had plenty to do (especially since I don't buy the literal interpretation of 'day' in that portion of Genesis. The actual word from which it was translated means something closer to 'a period of time.') In the midst of a lot of work with still a couple billions of years worth of work left to do, God thought it was important enough to pause and say--"Hey, this is good stuff." He further thought this pause for appreciation was worth having his prophets write it down for lots of people to read about afterward. As long as the scriptures are, there is still plenty that has been left out. Like with Hemingway (I promise not to bring him up all the time) if the words escaped the cutting room floor, you know they are important and very intentional. So, therefore, I continue to strive to learn to see the good things in a day--even in a really bad day. If all else fails, I know I can count on indoor plumbing to lift my spirits.

I can already see that these code names are going to trip me up. Even though they are things I actually call the kids, somehow it seems like more work to type that than their names. So, to make things even more interesting, I will also refer to the progeny as I, E, and e--respectively. The people who care about who is which will be able to figure it out, and the people who can't figure it out aren't likely to be the ones to whom it matters. Besides, it's much easier to type. I don't promise to not deviate from other boundaries I have, do, or will set.

e visited the pediatrician on Friday. E and I were terrifically helpful during the visit and earned compliments from the doctor. (a friend sent them little back packs after e was born [thank you!] and when I have to take them to appointments, I fill the backpacks with little amusements. It helps. I also sometimes resort to using the portable DVD player. No, I don't feel like a bad mom because of it.) It was a tolerably good visit for e, though the pediatrician, like the home nurse last week, was worried about the fulness of his fontanel. She is going to confer with the neurosurgeon to see if he should go back in for another head ultrasound or something. Meanwhile, the change in the kind of formula used to fortify his milk seems to have helped with his retching. He still does it occasionally, but he probably always will. It is much better. It is so good to have the whole family under one roof.

Introductus

Look at me. I started a blog. I made one once before, but then I quickly abandoned it. I also started a facebook page once. It is currently collecting cyber dust. I created a dummy email address to go with it so that I could 'lose' it if I wanted to. I guess I lost it. I also participated on that 'Good Reads' thing for a while. I'm not sure I even remember how to get back into my account. I make no promises that this blog has a greater life expectancy than any of those other endeavors, but--here goes, anyway. Perhaps this will at least take the place of those email update things we were sending to family less and less frequently. We shall see. Currently, I've only filled out the boxes that were required to start the thing. Maybe I'll fill in more eventually...maybe not. What fun surprises you are all in for.

Most people, when blogging, create code names for their family members. To protect against identity theft and such, I believe. I will use code names here...but more just because it is fun to have code names. I've never been a big nick-name sort of person. My name does not lend itself to shortening and I think too much about whether I should call a person by his/her real name or by the nick-name--how much acquaintance is required for nick-name usage? What does it imply? Does it even fit in the first place? It's all very stressful. Fortunately, I can just write in the first person and obviate the need to call myself something. My husband I will just call Husband. He has plenty of nick-names (when we were dating, I needed a flow chart to keep all of his friends and their nick-names straight. They all had more than one.) but I will stick with simple. Some friends we have are in the habit of referring to each other as "Husband" and "Wife." The first time I heard it, he said something like "Wife..." and then asked her to get him something or do something. It sounded rather as though "Woman, bring me food!" could have done equally well. I expressed my indignation that one should refer to a wife in such a way (I've never been good at holding my tongue) and they explained that they used the names Husband and Wife in a different way. They had worked hard to earn those titles and they treasured them. I get it. (Nod in your direction. I hope I haven't embarrassed you). So, I use it like that.

The first born will be referred to as Goose. (As in 'silly...'--not a Top Gun reference, although that would be good too). The second will be Little Mister, because he has always been. The third is Sweet Sir. Because he is. We have no pets. I have stipulated that I can manage cleaning up only one kind of poop at a time.

The name of my blog is from Ernest Hemingway. Many people can't stand to read his work (Probably because they were forced to read The Old Man and the Sea in high school and didn't get it--understandable. Try A Farewell to Arms. It's the most accessible one.) but he was doing (as most writers do) some profound thinking about the difficulties and restrictions involved in expressing pure things in an impure system. Using this for my title gives outlet to some of my reservations about this whole blog business--and to writing in general. I suppose, though, that expression is not really like a peach. A perfect, fresh peach is one of the most wonderful sensory experiences in the world (in my opinion). A slightly imperfect peach is pretty awful (again, in my opinion. Fruit and I have a tenuous relationship. My husband jokes that I have a 5-minute window in which I am able to eat bananas. It's more like 12.). Expression cannot be perfect, fresh, or true because the thing itself has to go through too many filters before it gets anywhere. Just ask Plato and Nietzsche. But--as with most things in life--we have to do the best we can, I suppose (don't ask Nietzsche about that. He wouldn't agree. Plato might.).

If you don't know where the blog's address came from, you should listen to more Raffi.

I am not going to go into our back history in depth--though I'm sure bits of it will crop up along the way--I'm just going to pick up with now and go on. I'm not sure where it will go or what I will do with it all, but here is what I have today:

We had our second post-discharge follow-up appointment with the surgeon (second in total, first one since the most recent discharge) and we were able to come back home again (a distinct improvement from the first one). They will be tweaking Sweet Sir's feeding regimen a little. Kids who have had this Nissen Fundoplication thing will often retch. Sweet Sir does. Quite vigorously at times. It is quite sad. Fiddling with how much food he gets how quickly can help. We're going to try that. He is also growing fatter than he is tall, so they are trying to allow him to grow more slowly--at his own rate but in proportion all around. He is looking a bit chubby. It's better than his previous 5 months of being too skinny. I was looking through some photos the other day, and came upon one where he was feeling particularly unwell. It affected me rather strongly. It's funny, too, because I wasn't thinking the day I took that picture, 'boy, my baby looks awful.' But he did. He really did. I am so grateful for how far he has come. I was going to stop by the NICU in order to drop off some more milk for donation today on our way out from the surgeon's office, but I panicked a little and fled. (Sorry, babies who won't get that milk now...) I couldn't go back there. Not yet. It's a little bit like being in a car accident. It's hard to drive or ride again afterward. Slowly, slowly. We can't just put the lid on and move forward, all that stuff has to come with us and get sorted along the way. There is a lot of it that is good and useful. Regardless, it all needs to be processed. It will take time.

Other hard things, aside from our hospital adventures, have also been going on. I'm not going to tell you about them because that's not how I roll (writing these blog things has been a considerable breech of my usual hermit-like habits, but I can pretend when I am writing that no one is reading it. If I seem weird when you say nice things about my writing or whatever I say, it's just because it's all a little horrifying for me and I'm not sure what to do, it's not that I don't appreciate your kindnesses. Thank you for that kindness. Please pardon my awkwardness. [Look at me, being all open and stuff!]) Did you like that? A parenthetical INSIDE a parenthetical. It's grammatically acceptable if you vary your bracket type. But anyway, in the midst of hard things, I have begun singing to myself--much to my children's chagrin (see our previous blog thing for their opinion of my singing). It is more socially acceptable than sucking my thumb, but it affects the same sort of result. From my non-denominational-Christian-church days, I retain a fondness for Christian pop music. Some of it sounds nice--at least sometimes-- (though my taste in music has never been stellar) and it has the added bonus of illuminating and encouraging lyrics (again, sometimes). At any rate, these two songs have been helping lately:

http://www.youtube.com/watch?v=knuHDPbE5es

(one guy in that one has a sweet mustache. the message is good too.)

http://www.youtube.com/watch?v=QSIVjjY8Ou8

(an important message applicable at any time.)