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.

It's Been Awhile Since I Rapped At Ya

(If you don't get the Jim Anchower reference I may have to boot you off this site)

It has been awhile - as you know we've been busy with the move, which I would consider to *nearly* be over. We have most stuff unpacked, and all the little things that were out of order with the new place are back in order (air conditioner, leaky tub, dishwasher not draining). The house is coming in to some sort of order, and we really like it. It's hard to tell how close-knit the neighborhood is, but people are out and about quite a bit (running, walking dogs, riding bikes) so I hope that's a good sign. We appear to have two different neighbors in law enforcement, one uniformed officer whose cruiser is usually parked just across the way, and a detective or something a ways down. That's nice. We've only met one person so far, but I'm sure we'll talk to others pretty soon.

The move itself, the day with the truck, was horrible, not so much the trip itself as the 18 or so hours preceding it, when we realized the truck was too small and then learned that U-Haul, due to a history of lawsuits, will not rent a trailer to pull behind an Explorer. I tried not to beat myself up about it too much because I know it's an inherently stressful process, but it was so frustrating because I'd been packing for three months, and how in the world was there still so much left? Oh, well, it's all here now, after a trip back the next day by Matt to pick up all the stuff we had to leave on the back porch.

Simon and David are settling in, and Simon is excited to meet new people. He's begun a week-long day camp through the new church, and David's started the half-day preschool there. Today Matt suggested we start David in full-day preschool somewhere, in August, and I agree. The little booger is as cute and adorable as ever (Matt has officially termed taking him out in public as, Winning Friends and Influencing People) but he is a lot of work these days - constant supervision. Constant. Especially in the new house, where some stacks of boxes remain, not everything is 100% childproofed yet, he can start the dishwasher in a heartbeat and the oven is a lot easier to open than the one in our old kitchen. Constant, I tell you. It is wearing me out, just the four hours between picking him up from the church and when Matt gets home after work.

My main task for David these days is setting up outpatient surgery for him to get fillings in his two front bottom teeth. Yep. Down syndrome makes him more prone to gum disease, not cavities, but his meds (especially the nebulizer ones) make him prone to cavities. Because he's so young they will sedate him (like with an IV, not just nitrous oxide or whatever), and our Blue Cross will cover the anesthesiologist but not the actual dentistry work, so we are in negotiations with the hospital to see if we can get some sort of discount from the $1500 - $2500 it might cost. He has not previously had dental insurance because it's so expensive and in my experience not worth it, between the premiums and the yearly maximum, and the BCBS lady basically told me not to waste my money until we had a better idea of what his dental situation might be. Well, I guess now we have a better idea .... I also have to get him set up with the New County's school system to begin speech therapy and other services - I made an initial contact with the Preschool Coordinator a couple of months ago, but she said there wasn't really anything she could do until we got here, so ...

This has been a whole lotta nothing, I suppose, but that's about the level my brain is functioning at these days. Here are some lovely photos to enjoy, and I'll try to make the next post a little more coherent:

This is at my sister's house; she has this giant (glass) jug full of wine corks, and on each visit the boys delight in taking them in and out. I figure hey, great fine motor skills practice for both of them:

                

       

My two boys in a delightful wig, and David helping to pack (none of the things he put in the box were designated to pack, but he was so cute and industrious, and so proud of himself for helping, that he can help me out any old day).

And here are three shots of my wedding dress - came across it packing. I did not have bridal portraits taken, which I regret because the dress is really beautiful, but here are a few.

 A close-up of the hem, the back of the dress, and the neckline. 

It's best from the front, the neckline and an empire waist, but it looked sort of droopy, not being on a dressmaker's dummy, so maybe I'll show some of those later.

(And yes, in fact, I did have to move a few stray Kix out of the way to

 take the close-up of the hem. How did you guess?)

Child Greatness, Part One. And some follow-up.

(Follow-up):  Everyone's a Critic (other blog), in which I discussed the funeral of a teenaged boy Matt and I both knew, and various aspects of the service with which I was satisfied, dissatisfied, or had no opinion about. Following the service Matt and I discussed a number of, ah, funerary preferences, from his perspective as a minister and mine as a daughter whose mother died suddenly when she was in college. One topic was the music, and last week we Matt and I were listening to this song, and he said this version would've been "perfect" for this kid's funeral, that it instills hope and faith in God: I Know My Redeemer Lives.

On a related note (music, note, gosh I'm hilarious) one of the other songs they played at the service was "O Glorious Day," which I really like (I am not generally a fan of contemporary Christian music, though I like it more than I did 5 years ago) - we also heard this at our Wednesday night contemporary service, when we were visited by a group of residents from this program in South Carolina. It's not a substance abuse treatment facility per se, it is not licensed or advertised as such, but all the men there are in recovery from substance abuse issues. It is a faith-based (Christian but non-denominational) program where the average length of stay is 2 years; there is daily chapel attendance and Bible study, in addition to AA/NA, vocational training and life skills, etc. It's a great place, our church designates some funding for them every year, and various groups have been down to visit the facility. I was really hoping my older brother (he's the Loved One I talked about earlier, in case you thought it might be my dad) would go there after he completed detox, but that hasn't come to pass. Anyway, they have a choir of about 20 - 25 men who came to perform for us, mixing hymns, contemporary music, and testimony/witness (I am really uncomfortable with both those terms; I'd rather use, "story"). "O Glorious Day" was the first song they sang.

And now for something completely different ...

Here's some recent … drama? That's not the best term, perhaps another will come to me as I'm writing. [Later: "flash-in-the-pan excitement that has since subsided somewhat but I'm still interested" - maybe I'll just stick with drama].

A few weeks ago, I decided I wanted to become a commissioned officer in the US Navy. This had never occurred to me before in life, never. I have been thinking about seeking employment at the VA ever since I went to that conference a month ago in Wilmington, but this would certainly be a serious step further. This is how it happened: