Raising children with neurological disorders and realizing, after all these years, that I've only been "passing for normal"
Friday, October 29, 2010
A Black Friday
1. We are grieving this Friday as my uncle Mike has finally lost his battle to cancer and passed out of this life. I have so many sweet and funny memories of him and his generous love for our extended family. He was beloved of his family and friends and respected by many. He will be missed.
2. I was able to attend Halloween parties in both classes today. It was a lot of fun and a good way to remember that life goes on, in spite of our grief.
Miranda before she got on the bus this morning. And she did the pose naturally. Sheesh.
I was so pleased to see Miss Barbara, Miranda's teacher, in a matching costume. She is the best!
As soon as we came home, she wanted to switch to her other costume. (The blue dress was a gift from her friend Charlotte; I had purchased the red one for the occasion and saved it especially for this weekend.)
Alex in the costume parade with his teacher, Miss Pam.
Alex steals Miss Pam's wig and gives me a great smile!
And here they are together, preparing for Trick or Treating on Sunday afternoon.
3. I have been watching the World Series this week and making great progress on my cross stitch. Of course, my heart is breaking for the Rangers, but I always feel bad for the losing team. I'm not a big baseball fan but I enjoy the World Series because it's always good baseball; that is, it's not usually boring. Here's a progress picture for you to admire:
4. I have finally seem to have beat back the skin infection and and feeling more like myself. I'm also very tired of steroids. I have 5 more days before I can have a glass of wine.
5. The children really had a roller coaster week. Alex had two really bad days at school, bad enough all I could do was weep and pray. On really good days, he can explain why he is upset. On bad days, he just breaks things. Or people. Or tries to. And Miranda's sleep schedule got off at the same time so she's been napping and then staying up until 10 pm or going to bed early and getting up for a snack at 3 am. Ugh. Still, more time in prayer is always a good thing.
6. Marshall's remodeling project has hit a few snags this week but we are praying for a productive weekend with some help from his dad. This is the crawl under the house and reinforce the floor part. Yuk. You couldn't get me to go down there for anything. The plans for the built-in bookcases look wonderful, though, and most of the materials are waiting expectantly in the shed.
7. Last weekend was productive in terms of furniture acquisition. We purchased a used dining room set that really fits the style of our house, Alex got his own roll-top desk and Miranda got a dresser with a pull-down shelf of her own for drawing and puzzles. And both come with more storage, something we are always lacking.
Bonus 8. If you missed my mention of it in the last few weeks, my mother's book is now in print!
If you haven't already ordered a copy for yourself, do so now! You can find it available here. If you live in South Jersey, the author will be visiting for Thanksgiving and will be happy to sign your copies in person!
And here's Jen.
Friday, October 22, 2010
Another Friday on (New) Steroids
1. My skin is still infected with something, although now we know it's not fungal. I saw my doctor again on Wednesday night and he gave me new steroids to try. If these don't work, he's going to do a biopsy and send me to a specialist. On top of it I have a nasty cold that I've been trying to beat back with resting every moment possible, which means I only just changed out of my pajamas today for the first time since Saturday. (I did put on clean pajamas every other day after showering; the bus drivers' are used to my wardrobe by now since I'm rarely dressed before the buses come in the morning.)
2. Last week's steroids were peppy and helped me power through my week of little sleep; this week, not so much. I still have the "my head's not quite in the right place" feeling without any other benefit. Or maybe it's just the cold virus taking over my brain.
3. Did you know steroids make you hungry all the time? I made the mistake of buying Halloween candy last week. Half of it is now gone. This is ridiculous.
4. Both kids had decent weeks at school and Marshall continues to patch and sand the wallboard in the living room. He borrowed a truck from a friend for the weekend and spent all of today buying and transporting large pieces of lumber and molding.
5. Thank goodness I have a college student helping me with the kids this afternoon or I wouldn't have anything to show for my week except clean piles of laundry and a lot of dirty pajamas (mine). All the necessities get done during bad weeks like this (children are fed, bathed, clothed, etc. and even if I don't manage to make dinner, there is plenty of food from which my husband can scavenge) but I end the week with the same messes in the same rooms we started with on Monday, and that is frustrating. Maybe I'll try some high octane caffeine tomorrow and see if that's enough to move me forward in the cleaning department.
6. I was able to read John Sherrill's They Speak With Other Tongues this week (or most of it--need to finish the last 20 pages) as part of my preparation for leading an informal seminar on prayer for the Youth Group starting at the beginning of November. If you haven't read it, I highly recommend it as a great primer for the how's, why's, when's and where's about speaking in tongues.
7. If you missed my mention of it in the last few weeks, my mother's book is now in print!
If you haven't already ordered a copy for yourself, do so now! You can find it available here. If you live in South Jersey, the author will be visiting for Thanksgiving and will be happy to sign your copies in person!
Do not, under any circumstances, miss out on reading Jen's post today. It's disturbingly hilarious!
Friday, October 15, 2010
Friday on Steroids
1. I have the plague. Or, rather, the staph infection my doctor thought I had last week (4 days of a nasty antibiotic Thurs-Sun) really wasn't since it kept spreading further down my body so the second diagnosis was a fungal infection and here's 2 different steroids to take for a week. Thankfully, the polka-dotted Sarah is fading slowly but life on steroids is well, a little weird. I was trying to describe it to my poor husband the other night while he was repairing drywall damage in the living room that I was a different kind of crazy this week because of the meds; somehow, he didn't find that very comforting. For example, this week, my brain is always a little off-balance and my eyes have difficulty focusing and I get hot flashes after taking one of the drugs. Too weird. However, there have been some useful side-effects...
2. Since I was nearly sleepless on Monday because of the steroids and on Tuesday because Alex was having a bad night, I was kept upright almost entirely by my medication on Wednesday, even going so far as to travel to and from church in the dark (I took the back roads which are very familiar and drove a lot more slowly than usual) for a Youth Ministry Team Meeting. It was amazing. And this morning I disassembled, cleaned, and reassembled the interior of the refrigerator. I can't decide if that was because of the steroids, the fact that we've spent much of the last week moving and sorting and cleaning half of our possessions and I just got into that groove, or this is how I'm coping with the stress of this remodeling project. Whatever the reason, my fridge looks and smells good for the first time in a while.
3. Also, since I had a sitter for the afternoon to entertain the children so I could get stuff done (like run those niggling kinds of errands where you have to scour 4 or 5 stores looking for one thing--this is why I do so much shopping online now!) I knew I had time to clean the fridge. Although, I did go out and do some grocery shopping after the fridge and before Miranda's bus (the reason the fridge was so easy to clean is that it was more than half empty) but I ran into a friend at Wegman's and chatted for a while and so didn't get home quite in time for the bus. I met the bus at the end of our block, feeling just a little foolish. Still, Miranda wasn't upset and neither was the driver, so no harm done.
4. Also, on Wednesday, I joined Alex's class on a trip to the farm for a wagon ride, pick a pumpkin to take home, and run through the corn maze as fast as possible (he did the latter without any help from me). It was a fun trip and I continue to be impressed with his teacher.
You can see more Fall pictures here. I will be making the same trip to the same farm on Monday with Miranda's class.
5. If you missed my mention of it in the last few weeks, my mother's book is now in print!
If you haven't already ordered a copy for yourself, do so now! You can find it available here. My autographed copy arrived today--happy reading! If you live in South Jersey, the author will be visiting for Thanksgiving and will be happy to sign your copies in person!
6. The remodel project has slowed down a little bit (moving furniture and hundreds of books is an exciting way to start and great for satisfying my need to clean something that is actually dirty) but repairing drywall and spackling--which is what Marshall's been doing since then--doesn't make for good pictures. Sorry. Here, however, is Miranda at the entrance to the living room, which is obviously barred from small persons to as not to irritate Daddy the remodeling artist:
7. The week has gone remarkably well, now that I reflect upon it, considering I have been ill for at least 10 days with a creeping fungus (okay, ewww) and we have upset both children by rearranging every room but the kitchen and bathroom. God is gracious, every day.
Bonus 8. Mimi the Great is feeling well enough to come up and visit tomorrow for lunch. Woohoo! She will not be driving herself, so have no fear. Marshall and I make really good chauffeurs.
And here's Jen.
Monday, October 11, 2010
Living Room Remodel - Part 1
A blog post? On Monday? Is everything okay at the Webber house? (Well, I have a fungal infection on my skin that turned me in to Polka-Dotted Sarah, but there will be no pictures of that!) Marshall is turning our living room into a place we all like to inhabit (instead of a place where the children play and Marshall and I avoid because it looks so well-worn) and I'm going to try to document the process on my blog. So here we go!
On Thursday night, Marshall and I moved 2 bookshelves and their contents to the front room. One bookcase had been residing in the corner of our bedroom while the other was in the corner of the living room. Now they are all 3 stacked together.
Back before we had children, the room that is now Miranda's was our library, full of books and a couch for reading. Of course, the couch belonged to the dog and always smelled like him, but still, it was very pleasant.
Part of the reason for the remodel of our living room is to build in bookshelves so that we can put the contents of 6 different free-standing bookshelves into our built-in shelves. This is one of those corners that will be transformed into a book shelf:
The blue chair has been moved out to the street; there will be no room for an easy chair in that corner once the bookshelves have been built.
This is where the kids' computer table resided. Obviously, it's been over-decorated. This will be repaired and I'm going to be putting a trash can here as well because when we moved the couches, this is what we found:
Yes, that is a pair of Alex's underwear among the toy cars, papers, chew toys, cheerios, crackers and 3 tons of cheese stix wrappers. Apparently, every time Alex got himself a cheese stick, he would tuck the wrapper behind the couch. It was really gross. I picked up all the large stuff with gloves before I vacuumed the crumbs.
Alex gets to have the kids' computer and the family printer in his room on the little table, but we unplug it at bedtime so he doesn't sneak in more Dr. Seuss on You Tube after hours.
Emptying bookcases and moving them from here to there:
and here
to there
That would be the television behind the green sheet.
And now it's a blank wall.
The couches are up on their ends to take up as little space as possible, which, of course, makes a good place for reading for small persons:
Yes, I know, Alex has a silly picture smile.
And, of course, you need to steam clean the carpet before you start a new project because the sooner you can get out the stains of lime yogurt and white grape juice, the better.
A good start, all in all, for our first weekend on the project.
On Thursday night, Marshall and I moved 2 bookshelves and their contents to the front room. One bookcase had been residing in the corner of our bedroom while the other was in the corner of the living room. Now they are all 3 stacked together.
Back before we had children, the room that is now Miranda's was our library, full of books and a couch for reading. Of course, the couch belonged to the dog and always smelled like him, but still, it was very pleasant.
Part of the reason for the remodel of our living room is to build in bookshelves so that we can put the contents of 6 different free-standing bookshelves into our built-in shelves. This is one of those corners that will be transformed into a book shelf:
The blue chair has been moved out to the street; there will be no room for an easy chair in that corner once the bookshelves have been built.
This is where the kids' computer table resided. Obviously, it's been over-decorated. This will be repaired and I'm going to be putting a trash can here as well because when we moved the couches, this is what we found:
Yes, that is a pair of Alex's underwear among the toy cars, papers, chew toys, cheerios, crackers and 3 tons of cheese stix wrappers. Apparently, every time Alex got himself a cheese stick, he would tuck the wrapper behind the couch. It was really gross. I picked up all the large stuff with gloves before I vacuumed the crumbs.
Alex gets to have the kids' computer and the family printer in his room on the little table, but we unplug it at bedtime so he doesn't sneak in more Dr. Seuss on You Tube after hours.
Emptying bookcases and moving them from here to there:
and here
to there
That would be the television behind the green sheet.
And now it's a blank wall.
The couches are up on their ends to take up as little space as possible, which, of course, makes a good place for reading for small persons:
Yes, I know, Alex has a silly picture smile.
And, of course, you need to steam clean the carpet before you start a new project because the sooner you can get out the stains of lime yogurt and white grape juice, the better.
A good start, all in all, for our first weekend on the project.
Friday, October 8, 2010
Sunny Friday!
1. It rained for 5 days last week, was sunny on Saturday, and then started raining again Sunday night. Finally the sun came out late on Tuesday and it's been beautiful ever since. Days and days of rain sink my spirit so I am way behind on all my To Do's, especially during a week when Alex turned 7 (on Monday) and my niece Gracie turns 10 today! All we gave Alex were books, although I may still get to the craft store next week and buy him a new notebook and crayons for his artwork. He's taking to reproducing (or attempting to do so) his favorite scenes from favorite books, which keeps him occupied for ages. Happy boy and lots of paper to recycle afterwards.
2. Alex had his regular visit with Dr. Jay on Wednesday to monitor his medications and while we were there, I asked Dr. Jay to look at this strange rash that had recently developed on my stomach. (Like most of my NJ neighbors, anything weird says BEDBUGS in neon lights until refuted!) It's not bedbugs, thankfully, but a strange infection of my hair follicles that requires another fun antibiotic. I made the mistake of taking it yesterday before breakfast (no food allowed with this drug) instead of 2 hours after breakfast and so was weaving around nauseously while trying to put the kids on the bus. Won't make that mistake again.
Sorry, I just had to share this image. My husband sent it to me earlier and it really made me giggle.
3. We're doing double birthday party duty tomorrow. I'm taking Miranda to a party for one of her school friends and Marshall is taking Alex to Gracie's party and to meet their new puppy. I'm carefully not mentioning to Miranda that she's missing out on the puppy, but her party is at Pump It Up, so I don't expect any disappointment from her. I'm also carefully not telling Alex where we are going so as to avoid disappointment on his side. He loves that place, too.
4. The living room remodeling project has started. Marshall and I started moving books and bookcases last night. We have 3 nice, 5 shelf book cases made of solid wood that will be available for sale sometime around Thanksgiving. Marshall is building in custom bookshelves in these two strange nooks in the living room which will be awesome when finished because we never have enough room for books. If you haven't noticed, we are serious book people. As this project continues, the living room will be off-limits to small persons for several weeks, which means all TV watching will be done through the server on various laptops throughout the house. That will certainly be interesting. I give Alex a week--maybe--before he can call up the program he wants through the complicated Sage menus without assistance from me. When he wants to, he learns quickly.
5. I have been able to do some productive stitching this week, so her is a progress picture for you of page 5 almost complete:
I should be able to fill in the rest of the missing dots tonight and move straight on to Page 6!
Another consequence of the living room remodel is that I've had to move my stitching from the easy chair in the living room to our bedroom, actually stitching from bed. It was a little more complicated last night but I'm sure I'll work out a system. And, besides, it's only until Thanksgiving. Or the weekend before, which is when my parents arrive, so that's Marshall's MUST-Finish by date.
6. Because Marshall will be spending all of his free time working on the living room for the foreseeable future, I'm starting to make arrangements for childcare 1-2 times a week so that I can get out and get the things done as well as get a break from the kids on occasion. We realized as we were discussing this latest project that what I was dreading most was the all-mommy-all-the-time burden. This way I shouldn't completely flip out on Marshall when he's halfway through the project because I can't take single parenting anymore, like I have in the past. We can hope.
7. My friend Kimberlee had a great post about her son's birthday this week that I actually responded to thoughtfully and want to share. Read it here.
Bonus 8. If you missed my mention of it last week or the week before, my mother's book is now in print!
If you haven't already ordered a copy for yourself, do so now! You can find it available for order here.
And here's Jen.
Friday, October 1, 2010
Waterlogged Friday
1. This is the fifth day in a row of rain. We had a very dry summer, so much so that many trees and shrubs in our neighborhood are failing and I am waiting anxiously to see if my dogwood will come back in the spring. It seems that we're getting all that missing rain all at once. I miss the sun. I joke with my friends that I'm solar powered because I function so much better when the sun is shining. It didn't help that no one in the house seemed to sleep well this week. Supposedly, the sun will come out tomorrow, but I don't expect the lawns to be dry enough for mowing for quite some time.
2. Half of my family is in Europe presently. Or nearly half. My parents left yesterday for a week in London and Wales with dear friends as an early celebration of their 40th wedding anniversary (next June) while my brother Brandon and his wife left Wednesday for Italy to celebrate their own wedding in July. I guess I envy their travels; mostly, I just miss them and wish them joyful vacations.
3. If you missed my mention of it last week, my mother's book is now in print!
If you haven't already ordered a copy for yourself, do so now! You can find it available for order here.
4. Many of you have been praying for my mother-in-law who had quadruple bypass surgery last week. She continues to heal, thanks be to God, and I was able to visit with her last Sunday night before Youth Group. She looked a lot like herself which was a great comfort to me. The Lord is good.
5. Miranda took her own scissors to her hair last Saturday morning, much to my severe annoyance. My friends tell me most little girls do this. Anyway, her short do is even more adorable than the previous cut, if that's even possible.
I have beautiful children, truly.
6. I'm finally all caught up to series 7 of New Tricks, which is currently airing. I cannot recommend the series more highly. It has just the right blend of crime-fighting, mystery-solving squad of people you grow to like without any of the unnecessary gore that plagues so many American shows. Who ever says television shows will only survive using young and beautiful leads has never seen what good writing can do with this group of actors.
I was thinking about the general obsession with crime shows both in the US and the UK (I watch plenty of them) and reflected that as morally debased as our society may be, we still want to see wrongs punished and justice served. We honestly want to watch people doing the right thing for good reasons, righteous reasons. We are weary of moral liquidity and want heroes that are respectable. One of the reasons for my enduring fandom of Buffy the Vampire Slayer is how I love to watch Buffy do the right thing in the most difficult circumstances. I don't care if Joss Whedon isn't a believer; he understands more about grace and forgiveness than most people I know. But I digress....
7. I really need to bundle Miranda up now and drag her off to the grocery store. And then come home and fold lots of laundry. I can keep up with the washing, just not the putting away.
And here's Jen.
Subscribe to:
Posts (Atom)