Sunday, December 21, 2008
I'm not sure how it started, but I will always remember wrapping Swisher Sweets boxes with wrapping paper and loading them up with cookies, then dispersing them to our neighbors/friends/teachers/bus drivers during the holiday season. I can remember walking them over to Martha and Louie Otto's house across the alley, as well as taking them into my teachers and my bus driver. My mom was a great baker (and cook) and my dad also was a fantastic baker. There was never a shortage of Christmas baking at our house. My dad would make rosettes, dusted with powdered sugar, and sometimes doughnuts, rolled in sugar. My mom would make Russian teacakes, thumbprint cookies, candy cane cookies, peanut brittle, anise candy, spritz cookies, cutout cookies, old-school homemade fudge, divinity, and more. I tend to take the easy way out. I opt for almond bark creations, goofballs, as well as some good ol' regular cookies. I have never messed with anise candy, and have yet to try divinity. I have tried fudge, but not the old-school kind, just the easy new-fangled versions. I have forced myself to learn how to make caramels, if only to take the pressure off my sister and also because my own family loves them so much. I don't know if a person can find Swisher Sweets boxes anymore, but I just opt for plastic trays. My pictures are a bit blurry, but you get the idea. It feels nice to honor my mom and give away cookies the way she did.
Saturday, December 20, 2008
Thursday, December 18, 2008
I was thinking yesterday about perspective & experience vs. fear & anxiety. Kind of in a jumbled, mixed & mired sort of way. I follow a blog by Robert Rummel-Hudson, who wrote a book called "Schuyler's Monster." His daughter has polymicrogyria, which is what Mason has. It is a type of brain damage that is not very common. The only difference between Schuyler and Mason is where the damage has occurred in the brain. I believe Schuyler's is perisylvian polymicrogyria, and Mason's is biparietal polymicrogyria. Schuyler is currently being watched for the beginning of seizures, which our neurologist told us would happen in Mason, it was just a question of when they would start. I had a very dear friend over last week, whose daughter has been having seizures for most of her 11 years of age. Also, there is my nephew, who had spinal meningitis when he was a baby, and almost died. A dear friend of ours, who fell following surgery and is now facing the loss of his vision. My husband's aunt, who had surgery for a brain tumor. A friend of ours, who is our age, who fell while she was walking and just finished surgery for a brain tumor. My grandma, who has ring melanoma in her eye and colon cancer. The list could go on and on.
I think it's safe to say we all have stories of family or friends who have faced unexpected medical issues. I myself had seizures at about one year of age, and was on phenobarbital for a year. One of my seizures was fever-based, one was not. Following the fever-based one, (also known as "febrile" seizures) I was packed in ice at the hospital. My mom said that every time I was sick after that, she watched me like a hawk. She said she looked for something in my eyes that would tip her off I was going to be Really Sick. My sister and her husband always worried when my nephew was sick after his bout with spinal meningitis. My friend worries constantly about her daughter's seizures. Schuyler's family is mega-concerned whether she is exhibiting abscence seizures or not. Our friend is fearful he may lose his eyesight. My grandma is nervous about coping with the loss of her eye.
My sister, Kelly, calls her fears "Kelly World." We laugh about that, but it's usually with a twinge of nervousness. There is something about being close to death, or Really Bad Stuff, that puts off a certain odor. I know that before Mas was born, my biggest concern was whether or not to circumsize him, and whether they would let me nurse in the delivery room. Those idyllic thoughts were slammed in the face by a whitish-blue baby who remained fisted and would not eat, coupled with the multiple birth defects and small head circumference, "fruity" smelling breath, non-stop crying, breathing too fast, etc. Things like that tend to knock you out of your comfortable bubble world into another world, a world where you can kind of see who you used to be, but can't quite bridge the gap to get back over there. I can see it in pictures of our family before Mason was born, especially pictures of our daughter. You can see the openness and peace in her eyes, replaced by sadness and fear in the pictures taken after his birth. I thought Steve Gonsalves, an investigator on the show "Ghost Hunters," put it well, when he said during an episode where they wanted him to fly to a location, that while watching everyone on a plane, he thought, "All of these people are going to die." Why did he think that? Because he was on a horrendous flight that almost crashed. That tends to color your world and make you see things differently. Is that fear? Or just experience? I know you can counter this and say, "You must have Faith." Bold words, and just the thing people like to say to people like us, but once you have smelled the other world, it's hard to remember what Faith smells like. I don't know how else to explain it.
I know that whenever Mas catches pneumonia, or runs a high fever, or just acts "off", I prepare mentally for the fact that we could be facing days in the hospital, or lots of worried moments at home, or lack of sleep from getting up to listen to him breathe. I don't think it's like that for parents of "normal" children. Their thoughts still smell like cinnamon and sugar and warm cookies and freshly mowed grass. My thoughts tend to smell like hospitals, and hand-wringing, and worry. I guess you can say I over-worry, or that I'm anxious, but I tend to view it as keeping myself safe. As long as I keep that smell in my nose, I will never be tempted to have the universe lull me back into that Other World. I know that the jolt of going from minor worries to Major Worries was a horrible shock to my system, and you see, I don't wish to go through that again. Although, I sometimes wistfully watch parents of healthy kids and wonder if they will ever appreciate the aroma that surrounds their lives.
I am told repeatedly by parents of messed up kids that other people "just don't get it." I agree, wholeheartedly, but am unsure how to explain it to them. I used to know people with special needs kids and feel bad for them, but only for a moment or two. Then, it was back to my (sweet-smelling) world of raising my daughter. Then, my son was born. Now, I get it. I wish I didn't. My friend shared a story with me about her daughter's last IEP. How she sat in the room full of people alone (she is a single parent) and cried during most of the meeting. How the teachers were cold and unfeeling. How no one understood what it was like to be her. Again, I get it. I know that smell. Wish I didn't. We recently took Mas to a neurology appointment; the first one in over five years. Saw the light in the doc's eyes as she ordered a multitude of tests, and knew that she could be opening Pandora's box of medicine, and that we could be tumbling down the rabbit hole of "what if's" and "let's test for this" and "why don't we try this" and "let's give this medicine a try"...I knew that smell. I got it. Wish I didn't.
It's hard to see the world in a safe and happy way when you have seen the other side. (I am also aware that there are levels to this other side, and I am not in the lowest level of that world. I am all too aware we could be dealing with respirators, or still have to deal with a feeding tube, or have a child that couldn't move, or communicate at all. Knowing that, however, does not change the world we are in.) A recent mailing from Mason's school quoted a parent as saying, "We are the only population that hopes we outlive our kids." I get that. My friend and I were talking about how Mason would live as an adult. It's not something I choose to discuss with very many people, but I knew she would understand. I'm not sure how he will live. Will he stay home with me as long as I am able? Will he be good enough to go to a group home? Do we want him to? I used to imagine a retirement on a lake in northern MN or Canada with a boat and a lot of dogs, with our kids visiting on weekends and the grandkids learning to fish off our dock. Now, I don't see that. Not that there aren't happy moments. I strive to find them every day, if only to teach our daughter that her life doesn't have to be forever altered because we chose to give her a sibling. I try to fill my soul with moments of gladness wherever I can find them. But, there's no denying that we've been thrust into this Other World. I get it. And it stinks.
Wednesday, December 17, 2008
Suffice it to say, "ready in about an hour" sounds a lot better than the truth, which is, "ready in about a week...or two." Harumph. Only one of the two pairs were ready today; no one knows when 14's lenses will be in...maybe by the end of the week, maybe next week? Hello? I didn't go postal, but considered a serious "lack-of-customer-service-downfall-of-western-civilization-good-for-nothing-inbred-lowlife-losers" speech...didn't go there, though! We'll see what patience brings us.
Tuesday, December 16, 2008
What better way to start the day when it's -15.9 degrees? How about waking up at 5:30 to start with, followed by having to drive Mas to school myself, since we had a two hour late start here and we would be at our eye appointments when the van could have come here to pick him up? Follow that up with a dual eye appointment for Riley and I, where not only did I found out that I need glasses (for night driving, at least), but also that I now have astigmatism in my left eye. We also found out there's a reason Riley can't see the board. How about dilatation drops for both of us? Burn, baby, burn. (The good news was, no cause for Riley's headache lurking in her eye, and no cause for my non-stop watery left eye lurking in my eye.) Then, off to pick out our glasses, then wait to pick them up, only to find out Riley's have a huge scratch on the lens and mine are completely unusable, due to the left lens being made incorrectly. (My left eye has it out for me, I say!) Then, off to pick Mas up from school, and back to the eyeglass retailer to see how long it would take them to fix said glasses problems...how does Wednesday sound? (In an hour? My foot!) Let's just say the day started at 5:30 am, and I was home, changed into sweats and sitting on the couch at 7:30 pm. What a day! I'm thankful we were able to get so much accomplished, but I think today should be designated for couch sitting....except for the fact that there are still cookies to make...lots of them. The good news is, it's only -8 this morning. Heat wave! Here's to quieter days ahead!
Sunday, December 14, 2008
It's an odd year, to be sure. Somehow, we captured like, five good pics of Mas by the tree. Unusual! On the bottom pic, you can see his Palmtop 3, his speech device. Christmas is finally making a bit more sense to Mas. It's the first year that he hasn't shown an unending interest in the shiny ornaments, pulling them off the tree and dropping them throughout the house. It's also the first year he hasn't taken baby Jesus on a trip at least once a day (could have something to do with the fact that baby Jesus is now firmly super-glued into his manger). He likes cookies now, which is cool, and also loves to open gifts. I think Mas is getting the hang of the holiday season! To be safe, I haven't placed the gifts under the tree yet, since I'm not sure when he'll decide to start opening, but it's nice to know he'll show an interest in the gifts once he knows they're his. I'm sure most of the season is still quite confusing and frustrating, but at least there are certain aspects (lights! gifts! cookies!) that we know he'll enjoy.
Thursday, December 11, 2008
There'll be chocolate star ones, of course, and goofballs, and regular shortbread, as well as frosted shortbread...spritz, almond bark covered peanut butter ritz, chocolate mint dreams, thumbprints with tinted frosting, crinkles, and a few others thrown in for good measure. I'm talking cookies here, folks. Lots of sugar and calories, formed into cute shapes to adorn a tray. The kind that call you from the freezer and entice you to bite them before they've thawed out. The kind that are too tasty to leave for Santa. (Unless you're Santa.) The kind that people say, "what is in this?" and you say, "Shut up and taste it." It begins today. And ends when the last cookie tray is handed out. From Swisher Sweets boxes loaded full of goodies back in the 70s to tins packed tight with goodness today, I am going to be a baking fool for the next few weeks. I may even post a redundant recipe or two, just to make your mouths water. Let's go, people! The ingredients await!
Monday, December 8, 2008
We had one family portrait taken while I was growing up. My brother hated it and didn't want to go, my dad complained about dressing up, I was miserable in dress clothes and thought it was stupid. It was mid-summer and we were all hot and sweaty and grouchy. My mom said we would never do it again. She was right! I had big plans for a family pic of us yesterday, but, lo and behold, the camera battery died! (karma, perhaps?) We did, however, manage to get pics of the kids. They only complained a little bit.
Well, 2 hours of a Christmas concert; my son licking my sleeve; drooling on his tie; pushing "I gotta go" repeatedly on his palmtop; and finally, filling his pants; later, I can say I have a new perspective on this whole holiday thing. I learned a lot yesterday, and here I thought I would just be learning how to sit quietly through too many renditions of Deck the Halls. I learned my daughter is a wonderful person who has been treated poorly by a teacher, a person who is supposed to believe in you and encourage you. I learned I am able to stay calm during confrontation. I learned that spending countless hours doing something doesn't mean you enjoy it. I learned that Mason likes to lick sweaters, and also point to the shiny rhinestones all over the front of said sweater. I learned that tuning is a good thing. I learned that it's hard to take pictures of a grandma in front of a lit Christmas tree without the lighting being affected. I learned that cutting up meat and cheese for a tray is a good substitute for a meal. I learned to listen to my daughter when she tells me things, and to assume she is telling the truth. I learned it's okay to let your daughter stay up past her bedtime if she needs to, on occasion. I learned that even 14 year olds need cuddling. I learned that the little train that goes around our Christmas tree is only cute if it's working. I learned that the holidays have to move around us, and that we need to be stable and central if they're going to work. I learned I need to quit complaining and get the gifts wrapped, the cookies baked, and the handmade gifts done, because that is what stay-at-home moms do. Period. I was schooled today. By a guy in a suit. Perspective? I've got it!
Sunday, December 7, 2008
Okay, I did it...sat amidst the twinkling lights in our living room lastnight and asked the fam which cookies "make" their holiday season. I actually perused the cookbooks, and made a list...so, time to hand on to that sled and start flying down the preparation hill! Next is making a grocery list and buying supplies, then it will be a (very) loud day of Christmas music and baking. I guess the Grinch has eased up somewhat on its' hold over my holidays. Today I get to attend the 5-12 Christmas concert at 14's school...yes, you read that correctly...5-12. If I survive, it may help put things in perspective. So, here's to the season....or to the going-through-the-motions of the season! In other news, Howard put on our Rush 30 blue ray disc lastnight, and we were amazed. Mason was THRILLED by it--clapping his hands, squealing, jumping up and down, smiling, laughing, jabbering, you name it! We were so proud! Especially cool since we went to a Rush concert while he was in utero--at about 4 months. I have never seen him so happy and so intrigued for such a long period of time. It was a moment of pure joy! I guess that's what inspired me to get off my behind and get out the cookbooks. Whatever it takes! Can't think of much more inspiring than Geddy, Alex, and Neil. Now, to figure out a way to get Mas to a Rush concert. He would explode with happiness! (Just don't think we can have him sitting right next to other people...maybe in the upper deck handicapped seating?) Something to ponder...
Friday, December 5, 2008
Is it just me, or is it hard to ring in the Christmas season this year? I'd like to blame it on the close proximity of Thanksgiving and December, but I'm not sure if that's all it is. I had to flat out force myself to put up decorations this year, and I usually revel in it. It is just because I'm getting old? Or, old and tired? Or, both? I'm done shopping, so that should bring with it a sense of calm relief. I usually bake a plethura of cookies, but so far, the urge has not hit. I have yet to even lightly peruse my cookbooks for recipes...which I usually do almost manically from Halloween on. Maybe it will come. In the meantime, enjoy the distorted Christmas tree photo above. It pretty much sums up my take on the season at the moment.
Thursday, December 4, 2008
This is what 54 bibs looks like...with 54 embroidered snippets that say, "MASON*CR2" on them. Hello. To make a long, arduous story short and sweet, I started sewing at 7:30 am and just finished at 11:10 pm. (All cutting and pinning was done yesterday.) The bibs are reversible, with a layer of flannel between each one, with a velcro closure on the back. Somehow, Mason's bibs at school found their way to the laundry, which is kind of a no-no for a day student. Of course, they were inevitably lost. I am hopeful that 54 brand spankin' new bibs will hold the kid over until the new year! Seems like a lot of work for joined pieces of material that catch drool, doesn't it?? Hmmmm.