Raising children with neurological disorders and realizing, after all these years, that I've only been "passing for normal"
Friday, November 25, 2011
Sometimes, Life Takes A Sharp Left Turn
I have since discovered that this is not the way things are supposed to happen in NJ. If you are in any kind of accident, you are supposed to call the police first, be cared for in an ambulance, etc. By not doing things in the proper order, we have had some other problems (no police report, difficulty finding someone to take the totaled car, etc.), but I cannot fault my father for thinking of Marshall's health and well-being first. It's just so wonderful to live in New Jersey, where bureaucracy follows you everywhere with a proper procedure to follow in all emergencies!
2. Marshall had x-rays and a head CT scan at the ER in the brand new Virtua Voorhees hospital (where you can get lost in the parking lot, the new campus is so big) and the result is a left clavicle in 4 or more pieces. Apparently, the hospital doesn't deal with things as minor as this and sends you off to an orthopedic specialist for a consult and, perhaps, an out-patient repair surgery, which we anticipate having on Tuesday, November 29.
3. My mother-in-law, who I've raved about before here, is a CMA and very calm and helpful in medical environments, so she's the one I requested take me to the hospital to see my poor husband on Tuesday and who I plan to take with us for his surgery next Tuesday.
4. We do have good insurance. There's a lot of paper work and claim numbers and names and phone numbers I have scribbled down on scraps of paper in my voluminous purse (that still has 2 screw drivers and a wrench in it to make sure I could get the license plates off of the totaled car before I signed it over to the man from the salvage yard) that I keep referring to when I need to, but so far, all we've had to shell out for is our $30.00 co-pay for the orthopedist. I'm sure we will have other costs when they remind me what our deductibles might be, but I am grateful to set those worries aside as Marshall is frantically trying to find another car for him to drive himself to work, in several weeks, when he is able to go back to work.
5. Speaking of his job, please be praying that all the details concerning that will work out. He will have to go onto temporary disability and miss a yet undecided number of weeks of work, which means he will still get a paycheck, but this causes other problems. Not to mention they fact that he's not there to help with the overwhelming amount of work his group already has to do every day. It is my prayer that his co-workers will have compassion for him instead of complaining about his absence because that absence causes more work for them. Mercy for all, Lord Jesus.
6. Yes, Thanksgiving was yesterday and we hosted my parents, Marshall's parents and our good friends, the Olson's and everyone had a lovely time and the food was excellent. Marshall was able to sit with us at the table and eat and enjoy the company, before retiring back to bed to rest his shoulder. But I am sure my thankful spirit was muted by concerns for my husband.
7. The next few weeks will take us into uncharted territory. Miranda seems to have a grasp of what happened to Daddy but Alex keeps having to be reminded about why Daddy can't sit with him or put him to bed. I am functioning, kind of, as a single parent, although I have my parents and Marshall's to help, as well as many other friends.
When Marshall asked me yesterday what kind of car I wanted him to replace his daily driver with, my answer was something along the lines of an urban assault vehicle, which would protect him on all sides from all kinds of danger, supposedly. It's not practical, because we need something with good gas mileage, but that's what sounds good to me. I'm sure I'll get over it, eventually.
And here's Jen.
Posted by Sarah Boyle Webber at 10:13 AM 4 comments:
Friday, November 18, 2011
In the Eye of the Storm
1. So my parents' move-in day was moved up to tomorrow from Monday so they are already on their way here. My mother called about 7:30 Eastern time to say they'd reached Indiana. Apparently, they couldn't sleep last night so they left Madison at 3 am local time and expect to arrive sometime today or early tomorrow morning. And I have a long list of things I should be doing in preparation for their arrival but I can't seem to focus BECAUSE THEY'RE ALMOST HERE!
2. Also, because I'm crazy happy that my parents will be here, I volunteered to host Thanksgiving for 8 adults and 4 children next week, including both sets of parents. I think we will be having 3 different kinds of vegetables, in addition to yams, just so everyone will be happy and not forced to eat something they don't want. We may be skipping the stuffing entirely, though, because so many of the guests are eating low-carb. diets. I was never a big fan of it anyway; I'd much rather expend my calories on mashed potatoes.
3. Surely I must have done something else with my week? Saturday I worked on Thanksgiving cards. Sunday was church, raking pine needles, YG and the movie. On Monday, Miranda stayed home because she was too tired to go to school (she went back to bed at 10:30 am and didn't move for 3 hours). Tuesday was MOPS, a trip to the library and then I sat down at read Jim Butcher's Side Jobs cover to cover. Wednesday was Bible study, my visit to Miranda's class while Mimi went and visited Alex's class for American Education Week and making Baylis bars for Marshall to take to work Thursday. Last night was our parent-teacher conference with Miranda's teacher, case manager and speech therapist, followed by dinner out with a friend. And now it's Friday morning. Quick week.
4. We had a great conference last night with Miranda's teaching team. We were all agreed about what continue to be her challenges in the classroom but pleased with the progress from a year ago. We also agreed that even though she's been given the label of autism, she remains incredible difficult to classify, even though the teaching plan would've remained the same, regardless of her label. Where she will be placed next year for kindergarten depends on how much she learns this year and how she does in the extensive in-house evaluations the school staff will do as a part of Kindergarten Roundup in February. I am not looking forward to the paperwork; it's quite a pile. But we feel very secure that she is in the best place possible, continuing to learn at a good pace. In some ways, we just have to wait for her brain to grow to see where we go next. Early childhood development is hardly a path you travel in a straight line, although this sometimes feels like we're stuck in a game of Frogger.
5. I am not a Twilight fan. I did manage to sit through the first movie, but gave up after that. I do still read the movie reviews, though, because they make me laugh, like this one from Drew McWeeny of Hitfix, formerly known as Moriarty of Ain't It Cool.
6. If you missed this from my FB page, I'm posting it here: an excellent interview with Joss Whedon about his Much Ado About Nothing movie that comes out next spring. I'm actually considering a plan of seeing the movie once a week, when it arrives in theatres. I haven't done that since I was 17 and the movie was Newsies. Now if I could just get a hold of a copy of David Tennant's performance in the same play from the London stage last summer, life would be complete.
7. You can still order a copy of The Circle of the Seasons: Meeting God in the Church Year, written by my dear friend, Kimberlee Conway Ireton, from her web page here. And if you want a copy of my mother's book, you can ask her for it in person, sometime next week! (It might take her a few days to find the right box of books.)
And here's Jen.
Posted by Sarah Boyle Webber at 9:35 AM No comments:
Monday, November 14, 2011
A Monday Movie Update
So, I decided to do a movie update this afternoon because I have a huge pile of laundry that needs folding and I've so lost my love for laundry (thank you, bed bugs). Not that I was ever very fond of the folding and putting it all away part. But I did go and see Immortals last night after Youth Group; perhaps that's my motivation. Or, at least, a better excuse.
Green Hornet (I actually tried to watch this on DVD, but it was so horrible, I turned it off. I made the horrific mistake of watching the original series in its entirety first, which is decent if a little campy. Like The Avengers movie made years ago, this film seems to miss the point entirely. Ugh.)
Source Code (Marshall and I were able to go out and see this while my parents were here in April--free babysitting!--and we really liked it. Not as amazing as Moon, but still very good.)
Fast Five (So much fun! Ridiculous fun, even Rotten Tomatoes gave it an excellent rating. However, you should still listen to the people at How Did This Get Made make fun of it here.)
Thor (I enjoyed it, but mostly for the actors themselves, especially Chris Hemsworth and Tom Hiddleston, and, of course, Idris Elba. I did not like Natalie Portman as Jane. I have watched all of Wallander and while he is one of the main characters, Hiddleston didn't seem like anything special in it. But in this, he was fascinating. And, after seeing Cappy and the preview for Avengers, I want to see Thor again, eventually)
X-Men: First Class (I enjoyed this, mostly because of Michael Fassbender.)
Super 8 (We were supposed to see this to celebrate Marshall's birthday, but we both got sick. Waiting for DVD.)
Green Lantern (I went to see it the weekend Harry opened. While I did like it, I think this review clearly lays out all of the film's problems.)
Cars 2 (So we bought the DVD last week when it was first available and so far, only Miranda has been able to sit through the whole thing. I have seen parts of the middle and the very end several times, but never all the way through. Which just means that, somehow, regardless of how enthralling he was in the first movie, Mater just doesn't work as a primary character for an entire movie.)
Transformers: Dark of the Moon (I saw it opening weekend and while I liked it, the movie was too long!)
Harry Potter and the Deathly Hallows: Part 2 (We saw it while in San Diego on vacation and it was awesome and I did cry when Harry saw his parents in the woods and cheered for Neville, because he was awesome! I also liked several parts where the film departed from the novel, like when Harry confronted Snape in the Hogwarts main hall.)
Another Earth (This just looks interesting, but it might be on my "too sad to see" list. Since my home life with special needs children is rather involving, I rarely watch serious or sad movies. I just don't have the emotional energy to spare.)
Captain America: The First Avenger (It was a fun movie and Chris Evans was awesome, as I knew he would be after seeing him in The Losers and Scott Pilgrim vs. the World. But the movie was too short; I wanted more and didn't want to wait until next summer.)
Cowboys & Aliens (James Bond and Indiana Jones on horseback, fighting aliens. What's not to like?!)
Colombiana (Never managed to get out and see it; life has been rather full lately.)
The Debt (I would like to see this, but it probably falls under the "too sad to see" label, as well.)
Drive (I would still like to see this.)
Moneyball (Loved it! Then went and watched the whole Ken Burns Baseball series.)
Abduction (The reviews were pretty terrible; maybe I'll catch it next year on video.)
Killer Elite (Still interested in this, if only for the cast.)
Real Steel (I am still hoping to see this, but would rather see Jackman in person on Broadway.)
The Ides of March (Occasionally, I do watch a serious movie, although I've yet to see Michael Clayton, even though I've heard it's excellent. This also got good reviews.)
The Three Musketeers (The reviews were extra horrible, but the steam-punk twist still looks interesting.)
Anonymous (As a fan of Shakespeare--although I turned off Shakespeare in Love after half an hour because I couldn't stand it--I might see this eventually. The reviews made it sound interesting.)
Immortals (It was visually sumptuous, the costumes breathtaking, even the violence super-stylized, but the plot had a few holes. Still, very pretty.)
Still Up coming:
The Muppets (Are there any bad Muppet movies? Actually, I haven't seen them all. The Great Muppet Caper is still my favorite, though.
Sherlock Holmes: A Game of Shadows (the first one was fun, so perhaps this one will be, as well, though not as good as Sherlock.)
Mission Impossible: Ghost Protocol (directed by Brad Bird; end of story.)
The Adventures of Tintin (directed by Steven Spielberg and based on famous comics that I've never read; still, could be fun)
And that's all, folks!
Posted by Sarah Boyle Webber at 3:26 PM No comments:
Friday, November 11, 2011
What Do We Call It Now That We Can't Call It Indian Summer?
1. Or, according to Wikipedia, we still can, because, in the US, there isn't a better term for it, even though it's not exactly complimentary. Still, the beginning of this week was warm and sunny and when we went to the park on Wednesday, it was like September again, warm and comfortable. Of course, on the same day in Wisconsin where my parents were madly packing, it was snowing. Since Wednesday, it's been colder and more of the leaves have fallen and are making mini-hurricanes in the wind.
Why, you might wonder, am I writing about the weather? Well, it's Day Five of being home with my children (no school this week, thank you, Mt. Laurel) and I'm certain I've lost important brain cells in the last 5 days. Hopefully, function will be restored on Monday, but there are no guarantees.
2. Alex did not cope well with the change in schedule and all the accumulated stress. (I keep forgetting that he is like my brother, a stress barometer, and even though he cannot communicate how worried he is or how he's reading the fact that Marshall and I are very stressed, he still feels it.) So he had temper tantrums every day, Sunday - Wednesday, and it was like deja vu from earlier moments in his life. Except that now, in addition to stomping and screaming, he says things like "I want to break everything" and "Nobody likes me." Talk about the best way to break a parents' heart! He would eventually calm down and apologize, but I haven't asked a lot of him this week in order to head off, if possible, any additional explosions. Which means he's played Angry Birds for hours on end. I'm sure his teachers are going to love me on Monday when they shove him back into his regular school schedule and expect him to work hard in class, like he has been. This is one of those times that feels like there is no way to win; we're just choosing the least worst outcome. Ugh.
3. We did leave the house and do a few fun things this week. We went to get hair cuts for both kids on Monday and did a little grocery shopping beforehand. Both kids were very well behaved in the store, which I was grateful for. ShopRite doesn't have the open space that Costco or even Target have and so it's harder to keep them out of trouble there. Tuesday we went to the Adventure Aquarium in Camden (our yearly pass expires at the end of the month) with a HS student who is great with my kids. Wednesday we went to Laurel Acres. Thursday we made a trip to Target, for groceries and a new pair of headphones for Alex (Miranda has managed to break 3 pairs of his headphones days after we buy them). Later today I'm taking them to Chick Fil'A to play and then Mimi will come over before dinner to help us do some clean up. And then we will have reached that wonderful thing known as the weekend!
Miranda's reward for sitting still for her haircut.
Fun at the aquarium.
4. There are two girls who live across the street that we've been playing with lately. Yesterday afternoon, Miranda spent time with them planning to re-enact the story of the 3 little pigs. Here are their representations of the straw house, the stick house, and the brick house (they creatively used pine cones to stand in for bricks):
Here they are in the brick house.
After making the houses, they came inside to make masks out of paper plates but it got dark before rehearsals could start, so they've postponed their performance until later in the week. It was amazingly adorable to watch.
5. I managed to finish Prohibition and, then, in 48 hours, get all caught up on Castle, 9 episodes in all. That really is a fun show. Of course, I haven't really cut down on the amount of video sitting on the DVR, just shifted it a little, because we are recording more every day! I have started the pilot of Grimm twice now and been interrupted twice, so I'm still only half-way through it. Considering how dark it is, I shouldn't have been surprised to see David Greenwalt's name under executive producer. I still haven't touched the backlog on at least half a dozen other shows.
6. I haven't started Pride & Prejudice and Zombies yet; just haven't had the energy. And who knows when I'll ever get back to Harry Dresden. My mother-in-law has almost finished the series, so at least someone is enjoying his adventures.
7. If you haven't yet bought a copy of my mother's book, Bathsheba's Lament, don't worry, she'll be here in 1 week with copies to sell to you! And if you missed The Circle of Seasons: Meeting God in the Church Year, written by my dear friend Kimberlee Conway Ireton, you're in luck, because she's trying to sell off her stockpile of copies, cheap. Read about it here. I just ordered 8 for my MOPS table ladies and may order more for our church book store.
Bonus 8. I'm hoping to sneak out sometime in the next few days and see this.
And here's Jen.
Posted by Sarah Boyle Webber at 10:16 AM No comments:
Friday, November 4, 2011
Conversations with God
1. Me: God, this time, really, I'm going to die. My house is a disaster. The stress Marshall is facing at work is completely off of the charts. I can't keep up with all the school stuff. I'm sure Miranda's teacher thinks I'm an idiot for all the emails I've sent her lately, apologizing for forgetting to do something important. And both children will be home all of next week (no school due to Teacher Inservice days, Election Day and the NJEA Convention). I'm just not going to make it.
God: You just need to hang in there a little bit longer. Your parents will be here in 2 more weeks. And your house cleaners will be here this afternoon. And my grace is always sufficient for you.
Me: (what I hear) Blah blah blah blah Your parents will be here in 2 more weeks blah blah blah blah grace blah blah.
Me: (what I think) Two weeks feels like forever. I am so tired. Christ, please have mercy on me, and on my family.
Note to my readers: Yes, I know my parents are not actual superheroes and I have many family and friends already here in NJ who do help us, in a great many ways. But when I'm really struggling, all I can think is, "I want my mother!"
2. So, life's been a little stressful around here lately, but we keep moving forward. I'm trying to write about thankfulness everyday on Facebook, although sometimes it's a struggle to think of something besides: "Well, I'm not dead yet" or "Marshall still has a job today" or "Miranda isn't wetting the bed every night." For my family and friends who read this blog and pray regularly for us, I am grateful for your prayers. Many days I believe that's all that's holding us upright.
3. We are trying to get a handle on Miranda's regular expressions of defiance with bribery, something we've used so successfully with Alex. She now has a chart on the refrigerator with items like "put socks and shoes away," "brushed her teeth," and "followed directions" and if she gets 10 stars, she earns a new book. There were several books she wanted on the most recent book order form from Scholastic that I wasn't willing to buy (they seemed the equivalent of cotton candy and I'd rather spend real money on worthwhile books) but we negotiated for this system so that she could earn them. She's only managed to get one star per day since we started earlier in the week, but that's still progress.
4. I did read Game of Shadows: Barry Bonds, BALCO, and the Steroids Scandal that Rocked Professional Sports by Mark Fainaru-Wada and Lance Williams this week and really enjoyed it. Of course, it's made me a whole lot more cynical about watching the Olympics, and I will probably not look on professional sports with such naivete again. But not everyone can be doping, right?
For a change of pace, I picked up Pride & Prejudice & Zombies: The Classic Regency Romance - Now with Ultraviolent Zombie Mayhem! from the library yesterday. It will either be wonderfully entertaining or too gross to manage. I'm hoping for the latter, but I've never been a zombie fan.
5. I'm still loving Revenge, even as it's getting murkier. I had to dump Hawaii Five-0 off the DVR this week; I'd had enough of their cruelty and rule-breaking. I tried to watch the second episode of Hart of Dixie and turned it off in annoyance, so that show may be gone, too. I still haven't caught up on Castle, or even started Terra Nova, Grimm, or Once Upon a Time. Too many Gigs, too little energy.
6. Halloween was fun but I was so ready for November on Tuesday. With all the birthdays, costumes and parties, it was just one long month of excitement (for the children) and exhaustion (for the parents). Pictures of last weekend's festivities start here.
7. If you haven't yet bought a copy of my mother's book, Bathsheba's Lament, don't worry, she'll be here in 2 weeks with copies to sell to you! And if you missed The Circle of Seasons: Meeting God in the Church Year, written by my dear friend Kimberlee Conway Ireton, you're in luck, because she's trying to sell off her stockpile of copies, cheap. Read about it here. I just ordered 7 for my MOPS table ladies and may order more for our church book store.
And here's Jen.
Posted by Sarah Boyle Webber at 2:12 PM 1 comment:
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