Monday, December 27, 2010

Children need...

My children have, despite recovering from their little bouts of contagion, adapted pretty well to the new surroundings here at Grandpa's house and the deviation from the norm that naturally occurs when taking the family on vacation.

Fun for all--a BIG snowstorm. There are piles of snow all over the place, with the totals in this area of New Jersey being around two feet. Yesterday, as the snow was beginning to fall, our children and my brother-in-law's older two children excitedly played outside. He and the kids came here from California, and the last time they saw real snow was five years ago, when they were here for Grandpa's 70th birthday. And the younger one was only 2, and barely remembers. Today, with there being PILES of the stuff, they again went outside to play. I figured that 2 feet of snow wasn't so great for my kids being that they're both on one side or the other of 3 feet tall, and that's just not enough wiggle room.

I'm sure that schoolchildren everywhere on the East Coast are very disappointed to have gotten this amount of snow yet aren't missing any school, since school is out for vacation anyway. It's like taking a sick day when you're actually sick (for the record, I never liked taking sick days because, shocker, I loved my work, so I only took sick days when I was REALLY sick) and can't enjoy it. I had to explain to the Cali kids about snow days.

We've been here several days, and the boys are just fine. They feel better, if not completely well, and they're in the groove of things here. They know where the kitchen is. They know that Grandpa keeps most of the toys in the basement and that's where to go to play with toys. Meatball knows where the remote control is and also knows how to turn the TV on. Generally we catch him in time to take the remote and put on something that he wants to watch.

We haven't all been eating our meals on the same schedule. The California crowd has been a bit jetlagged, and my kids are not waking up at the same time, as they have a tendency to do at home. Usually, breakfast at home with the boys happens with both together, and me making them whatever they like only to have them finish by the time I make the mistake of thinking that I have the luxury of cooking a breakfast burrito (wheat tortilla, 2 eggs, cheese, veggie sausage, salsa, and plain yogurt or sour cream, with avocado if we have it) or even egg and cheese on a bagel. Meatball can be stalled by the buckles on his high chair. But here, one kid gets up at a different time, I get up at a different time than Musical Daddy, and it's never the same. So breakfast is...whenever....and then my kids want snacks, and sometimes Meatball has a nap after snack and sleeps through lunch. I'm not worried about them eating enough, though, considering how The Boy wanders into the kitchen and says "I am hungry!" multiple times a day. He also calls meals by name although he rarely gets the right he'll wake up in the morning, come downstairs, and sit at the table, saying "I want some dinner."

It's been slow around here, though, since we haven't been going places or making plans, yet still fun. We have toys, books, the Wii, computers and iPods/iPhones/iPad (not ours), and TV of course. I brought some craft stuff as well. Our 7-year-old nephew has been great with our little ones, which is nice. Not that our 11-year-old niece hasn't been good, because she has, but he has been chasing the boys around and wrestling with them just like they do with each other. We grownups have also been getting along well. Not that I'm surprised about that either...because we're acting like grownups.

One thing that has not happened this trip is that The Boy has not slept one second away from us and has been insistent that we be right there with him. Meatball has spent most of his sleeping time in the crib but also spent some time by my side at night. It's a lot easier in a king-sized bed. The Boy has definitely been more in need of affection and been less interested in going to bed at a decent hour and at least starting his night in his own bed, as he used to do. I think this started before we left for our trip, though. He's just needed a little extra care.

He has also been more in need of verbal confirmation, whether it is in response to something he says (like when he purposely mixes up the beginning of Chicka Chicka Boom Boom, saying "A told T!") or, when he is building letters or numbers out of any building material he can find, he will say the letter/number and we have to at least say it back before he'll go on.

Musical Daddy and I agreed that we never want to be too busy to listen to our children, even if they're saying or doing the same thing OVER AND OVER, as it is still exciting for them. We don't want to stop them from talking to us or telling us jokes. We don't want to put them down or belittle their efforts because, as much as we don't want to think about it, there will be other people in their lives who do exactly that, and we want them to be able to stand strong against that with our help.

I guess it goes back to manufactured hardship, as I posted about a little while ago. I don't need to get my kids into the habit of NOT talking to us or sharing things with us just because there will be people in their lives who won't always have the time.

Friday, December 24, 2010

An Auspicious Beginning

Tuesday night was really when it started but by Thursday morning, there was no denying that The Boy had a raging case of pink eye, plus a horrible cold. That along with the nasty bruise on his face from Sunday's face-plant into the headboard of the bed has caused him to look like no less than a walking disaster. Poor little guy.

Meatball seems to have a little bit of the itchy eye as well, and I think he had the cold first. We're treating both kids for the pink eye and hoping that it will clear up soon. They both look better but with their colds and all that drainage from eyes and nose, they get crustiness on their face. Yuck.

Yesterday we cancelled the lessons that we were supposed to teach on our way out of town, because part of the plan was to bring the children, take turns teaching and watching them, and let them play with whichever kids were not taking lessons (3 kids total, ages 7, 5, and 3. The older two take lessons with us). No way were we going to show up at their house and spread the pink eye love.

We called my aunt and let her know that the kids were so afflicted, and was it still okay for us to stop there. She said to go ahead and come anyway. Turned out that she was less concerned about the typhoid children than everyone else, and because we know better than anyone what it's like to want to avoid germs and illness, we drove on to New Jersey after dinner instead of spending the night. She's smart--she set out certain toys that are easily washable for the kids, and we did our best to keep them in certain areas of the house. Several times I followed one or the other child wiping any places that they touched.

We arrived at Grandpa's at about 9:30, which was around the time that I began to feel dizzy, weak, and generally crappy. By the morning, I could barely move. So now I'm sick and pretty much non-functional in terms of chasing around the children, who are sick but don't know that they're sick. Meatball is very interested in everything that he shouldn't be touching and has to be watched like a hawk. And there seems to be a lot that he wants to touch and shouldn't.

We have a variety of plans over the next few days that I'm hoping to be able to keep, but it is quite difficult when moving oneself is an issue. I didn't even feel well enough to stand in the shower; I took a bath in the hopes that I'd feel better. And I do, a little bit. But not much.

So, friends, if I haven't made plans with you yet while I'm visiting, please know that I'm waiting until I feel better. We will be here through New Years.

Wednesday, December 22, 2010

Do you hear what I hear?

IEP meeting for The Boy this morning, and hearing aid appointment in the afternoon. He got the hearing aids and seemed to tolerate them well. Of course, he is usually good for doctors and medical personnel, which includes therapists such as his physical therapist and people who evaluate him. His attitude seems to be, "So you're JUST going to stick something in my ear? Or ask me to say stuff? And NOT jab me with sharp things or pump me full of stuff that makes me feel crappy? Where do I sign up?"

So the hearing aids are another thing to check and maintain. We need to be very careful with them. There are a few simple maintenance things, plus battery changes every 2 weeks or so. Batteries are covered by insurance, thankfully.

Also, The Boy has a nasty bruise from banging into the headboard of our bed. Jumping, like a monkey. He has a cold, and he seems to have some pink eye as well. Looks pretty bad. Still an improvement over last year at this time, when he was in the hospital with what was probably RSV.

Leaving for our trip tomorrow. Should be fun.

Monday, December 20, 2010

Get Recentered

I am fortunate to subscribe to a number of great parenting blogs and also fortunate to have friends online and "in real life" who have great perspectives and interesting viewpoints to share.

I had a friend repost something about our society's treatment of babies and how it really is ridiculous that we mothers carry this baby inside of us and nurture him/her, only to be encouraged to put him in the carseat and leave him there, or put him down in a bouncer, certainly NOT pick him up right when he cries because we'll spoil him, and not to dare have him in our bed, and better to just put him in a crib in a separate room. Um...huh? I feel like these various baby contraptions can have their place, because babies do like to get down and play and hang out a little bit, but they also need LOTS of close contact with people. Mother in particular although I know that in our house Daddy has that certain kind of magic, particularly with The Boy. You know, the kind where you pick up a baby or small child and they instantly release all tension and relax right into you, because they trust you. Oh, and we definitely have a babies-allowed policy in our bed. They're snuggly.

But what that actually reminded me of was this post called "Why Not" from the wonderful woman over at Authentic Parenting. Why would we want to condition our little babies to spend so much time alone, and learn to self-soothe? To prepare them for what? Why, similarly, do we say "no" to our children in situations where there's no real reason for it? The author references a "false sense of scarcity." Not to say that real scarcity isn't a problem, but that preparing a child for the world in which "nothing comes for free" when they're not really at a point where they need to learn that lesson is a little foolish. I admit that I'm guilty of this sometimes, and I plan to think twice about it. Not so much enforcing a sense of false scarcity, but that sometimes I say "Well, when he is in school, he won't be able to do that" or "when you're not the one here, he doesn't have that option." There's no point in "preparing" for hardships that may or may not come, and if they do come, they may not be hardships after all. Better to just let them enjoy what they like now and do things the way we like instead of trying to create problems where none exist, just for the sake of "learning." Learning what?

My lighthearted example is that The Boy frequently asks us to draw letters and numbers and pictures for him, rather than drawing it himself. I keep thinking that when he starts preschool, he won't be able to ask his teachers to do that for him. But I've noticed that he really does do it himself sometimes, and when he wants us to do it, he watches us intently, studying each part of the process, and knows how to write just from watching us. He can do most letters and most numbers, with some backwardness but if he says that something is a G, you can tell that, yes, it is. And that's pretty good. I don't know that he would ask the teachers to draw things for him, and even if he does, the worst that could happen is that the teacher says no and moves on to something else. He might be "over" that by the time he starts school and will have moved on to writing it himself just to show he knows how.

But anyhow, I've read a few others, reminding me about positivity and affection and all that other stuff that is of paramount importance to me, and it is refreshing to shake off some of the baggage.

Oh, and I also mentioned our potty struggles to the physical therapist today, who shrugged her shoulders and said that it's The Boy's job to finish the process, and he will, soon, when he darn well feels like it. And that also feels better to me, because another professional whose opinion I value has said that.

Speaking of positive and recentered...Meatball is up and cranky.

Friday, December 17, 2010

At my best, at my worst

This week was a perfectly reasonable week, but I think I felt better about the children and myself, so we had a better time.

I'm still at a loss as to what to do about The Boy and his potty habits. When he feels like it, he goes and keeps his pants clean and dry. When he doesn't feel like it, he has "accidents" which I don't even think of as accidents, because that implies that he tried to get to the bathroom and missed. When he doesn't want to be taken to the bathroom, the temper tantrums begin, so it is even difficult to preempt the messes that ensue. He has these good streaks of several days without accidents, and now is not one of those times. And he's been about the same level of "trained" since his 3rd birthday which was 3.5 months ago. Last week was actually was a decent week this week except that today was bad. And last week I was a lot more angry about it, for no real reason.

I even called the pediatrician's office today and spoke with the nurse about it. She asked if there was a physical issue. There isn't--he's been to a GI doc. She said to try and get him into a good routine of going to the bathroom after meals or whenever it seems like he's been having accidents. Here's what happens: "I too busy to go potty! I not need to go!" 2 minutes later: "I too busy! I not need to go!" 30 seconds later...

In general, the temper tantrums abound for any number of reasons, because he is The Boy and because he is 3. He threw a fit for what seemed like no reason in Trader Joe's today, incited by the fact that I wanted to buy rice pudding. I told him he didn't have to eat it and it wasn't for him anyway; it was for me. But that wasn't good enough. Some woman tried to talk to him, which is annoying but acceptable, but then she tried to touch him, to which I responded rather harshly, "Don't touch my children!" Sorry, I just don't take kindly to strange people touching my kids. They're actually very affectionate and enjoy it when people play with them and sit with them and hold them and whatever else, but that's people that they know, not complete strangers in the grocery store. I was thinking about seeking her out to tell her that having had a cancer kid, I get paranoid about that sort of thing, but I wasn't in the mood for the lecture that I'd probably get, and I just don't care that much what some strange person in the grocery store thinks. Maybe next time she'll think twice before reaching out and touching someone else's kids.

Successful outings this week included another trip to My Little Outback, the indoor playground, on Monday, and the Carnegie Science Center on Thursday with another friend and her twin girls who are a little younger than The Boy. The boys have a great time at the indoor playground, and not only is it small enough and contained enough that I can let them wander and do as they please, but they also have a person on staff whose job it is just to help out with the kids and make sure that everything is being played with appropriately, so that person was helpful when it was time to round the kids up and go.

As for the science center, I need to remember next time that there is an awesome water play area without awesome smocks or rain jackets, just ineffective ones, so a change of clothing is in order, and that area is to be visited either first or last. It's a part of a whole exploration area specifically designed for the younger set, with a ball "factory" that has different ways of moving ball pit style balls up to the top, to be released onto the children working below to get the balls back up to the top. There are tunnels, blocks, and things to climb. Elsewhere in the center, there is robo-world, and a big electric train setup. There is a sound exploration area, and a light exploration area as well. The Boy was very fond of the shadow capture exhibit, and Meatball even did it a few times.

Today was a slower day, with just that trip to Trader Joe's, followed by some time playing outside in the snow (which wasn't good enough snow for real snow play) and some lunch. I wanted to get the kids back to napping at the normal time, which worked for Meatball but not for The Boy. So I had a lousy nap while he pestered me and watched a movie, and he took a nap with my mother from 3 to 5:30. So he is still awake.

It is important for me to remember that my children do have their own needs and interests that may differ from what I'd like them to do or what they really should be doing, so we have to come to some sort of consensus. Occasionally it means that I just drag The Boy along and suffer the temper tantrum until he gets over it. I ended up yelling right back at him a number of weeks ago, but that didn't feel right to me. It doesn't really feel right to me to yell at him, although I'm less concerned about yelling "STOP!" at him when he is trying to walk out of the bathroom with that moment's poo accident still stuck to his behind than I am about purposely trying to get him to toe the line by way of fear and wrath. I don't really do fear and wrath very well anyway, and I'm sure he knows it. Or maybe he just wouldn't recognize it if he saw it, because when someone is trying to talk to him about something he needs to work on or correct, he just starts talking about an entirely different topic. It is very frustrating, but not dissimilar to what adults try doing to children when they don't want them doing something.

I'm glad to have Musical Daddy, who is so gentle and patient with the boys. My parents, too, are great for that.

I'm also glad to have rehearsal tomorrow morning from 9 to 12 and a gig from 9:30 to 12 tomorrow so that someone else can negotiate the toilet with The Boy. Or clean up the poo.

Tuesday, December 14, 2010

Short Oddities

No, I'm not calling my children oddities. Not that I haven't thought it.

I put Meatball to bed at around 8PM. When he woke up for some nighttime milk (as he always seems to do right when I close my eyes to sleep; I swear he can hear them), I went in to get him and he was shirtless.

We've already learned never to put him to bed without pants over a diaper, because he will take off the diaper when it gets wet/poopy. But the shirt? No idea where that was coming from. Particularly since it is Winter, weather-wise even if not by the calendar. And it's cold!

Meatball takes himself to the potty. He hasn't actually gone in the potty or the toilet in awhile, but now he takes himself to the Elmo potty in the downstairs bathroom, sits for awhile whether he has pants on or not, and then climbs the stepstool to the sink to wash his hands.

The Boy remains in that "almost" stage of being potty-trained. Keeping him accident-free depends on some combination of parental diligence, dumb luck, and his deciding that he wants dry pants instead of wet ones at that moment...because he'll have "accidents" just because he feels like it sometimes. Not much to be done about that.

We are planning our trip east. We leave next week on Thursday, stopping in Harrisburg, and we arrive in NJ on Friday, probably by lunch time.

I keep meaning to write a long and meaningful post about health care reform but I just haven't had the sitzfleisch.

Monday, December 6, 2010

A quick check

It's been a little over a year since we moved here. Since I gave up the idea of returning to the job that I loved. Since we sold the house that we owned and cared for and worked on, in a neighborhood that wasn't necessarily full of lots of community togetherness but still had great amenities for our family such as the convenience store and drugstore, and comic book store, within walking distance.

Looking at us now, we don't have the jobs that we thought we might have. It's just been too hard to get in the door. We have some things. We're making a little money. We have some private students. But we're still living in my parents' house with no end to that arrangement in sight.

I get WIC food for the kids, because we qualify financially, and it definitely helps.

Certainly not how I thought I'd be doing things at age 30.

But you know what? I look at my boys. The Boy's life was likely saved by our moving here. He may have survived, but he probably would have been damaged by the additional chemo treatments, not to mention the blood pressure cocktail that really wasn't supposed to be long-term for him. Who knows how much worse his hearing might have gotten? Who knows what his kidney status might have been. And Meatball is SO happy and healthy, and so loved. He gets so much positive attention and has been consistently thriving since we got here.

Ask me to choose--our careers and sense of independence and earning potential, or a better quality of life for these children?

Don't forget that we chose what is best for the children. And if you'd like to criticize me for living with my parents (who have been so generous with their resources, space, and time), after having been a homeowner and a person with a thriving career (which may have been flushed anyway, given the climate in New Jersey education), please keep in mind the choices that we made, and would make EVERY day of the week, for our children, and then remember that you probably have no room to talk about us.

It's the children. Every. Single. Time.

Wednesday, December 1, 2010

Hearing and Listening: Evaluation Reports

The Boy has had a busy couple of days. Yesterday, he was seen by an otolaryngologist (that's ear, nose, and throat doctor) to confirm that he is eligible for hearing aids and doesn't have structural issues afoot that caused his hearing loss. No, for those keeping score at home, that's another in the win column for the chemo drugs.

This morning, he had a hearing aid appointment. This was where the audiologist talked to me about hearing aids, measured The Boy's auditory response, and fitted him for the molded piece of the hearing aid. Also, The Boy got to pick out what color the actual electronic piece would be, and he chose dark blue. We asked him several times, and showed him other colors, but he was sure that he wanted the dark blue ones. That's the piece that goes behind the ear. So it will probably be pretty conspicuous. That's fine, though, because a conspicuous piece of equipment means that we'll see it more readily and pay attention. And, you know, keep it away from dangerous situations.

We were glad to have our good friend/adopted aunt come with us for the appointment. She has experience with little children in preschool settings and, more to the point, has hearing aids herself.

We need to decide whether to have his next hearing aid appointment, when they'll actually be ready and be given to him, before or after our trip to New Jersey. On the one hand, having them for the trip means that he will get to wear them and be used to them so that when he comes back and starts school, he'll already know how to wear them and tolerate them. Additionally, while on the trip, he and Grandpa can compare hearing aids, and it might make him feel better about wearing them knowing that Grandpa has them too.

On the other hand, not having them on the trip means that we don't have to worry about getting used to a new piece of equipment while away from home. I'll see what Musical Daddy thinks (whether he tells me after reading this blog or whether the two of us actually have a conversation...hard to say which will come first).

Also today was his appointment with the Early Intervention Services through the Pittsburgh Public Schools. If you're familiar with early intervention, you know that there's one division that generally goes through the state and takes children through age 3. Once they get to age 3, services are available through either the school district or another organization that might serve children in several school district, and that takes them up until they get to school itself.

Early intervention covers therapies such as physical therapy, occupational therapy, speech therapy, feeding therapy (which is part of speech therapy most often, depending on the specific issue), developmental therapy, and hearing and vision service as well. The Boy received OT briefly and PT for awhile in New Jersey.

When I arrived at the meeting, there was a person who seemed to be the coordinator, if not of the division at least of that meeting. Also, there was a physical therapist with a student extern, a speech therapist, a hearing teacher, and an educational audiologist. I handed them the results of The Boy's audiogram, and that qualified him for hearing services. Much of the meeting was spent on that.

I told them to evaluate him for speech, even though it hadn't been too long since his last evaluation, in light of the latest hearing test results. He was also evaluated for gross motor skills because he currently receives physical therapy services.

My mother wanted me to have them give him what amounted to an IQ test. The Wechsler test (WISC) is what she had in mind. I asked them about it, and they said that they didn't see a need. She said that the next time she sees this group of evaluators, she will ask them herself, because she thinks that there needs to be some sort of baseline for where he is performing. If he'll cooperate, it probably couldn't hurt.

In the area of gross motor skills, the evaluator said that The Boy seems to be at or close to the level where he should be and would not qualify for physical therapy through the school district. It is likely that we'd discontinue the therapy that he is getting soon, even though he does love to go, because there is less of a need for it. The evaluator said that as long as he continues to be active, and perhaps spends some time practicing the tricycle, which he really doesn't like, he'll be fine.

The Boy also did not qualify for services in the area of speech. The evaluator said that there were a few typical consonant substitutions (you know...saying W sounds for R) and a few that he didn't get right but would fix upon correction. She said that his speech is great and sounds typical. She said that it helped that his hearing damage didn't even start to occur until after his language had already developed, at least in terms of what he had heard.

The hearing teacher also did some work with him, trying to figure out how well he could locate sound and how he was hearing certain sounds. Interestingly enough, she was able to figure out that some consonant sounds did give him trouble. She had that LeapFrog Fridge Letters, with which he was familiar. She asked him "what does B say?" and he said "buh." And asked a few others...and then asked "What does S say?" to which he responded "I want another one." As in, he had trouble with S, a high-frequency sound, so he didn't want to say what it said. Interesting.

The evaluators were impressed with The Boy's intelligence. They were thrilled to see that he knew all his letters and numbers and could count with one-to-one correspondence. They were interested to hear that he had both the patience and the ability to put together puzzles that had many pieces. They said that he seemed very smart.

I told them that with his birthday being August 30, two days before the cut-off, that we wanted to wait the extra year to send him to kindergarten and not push him to go to school and be the youngest in his class. Not that he won't have social issues anyway, but I'm not concerned about him getting to the academic material in school a little later, nor am I concerned about him being "bored" in preschool because he needs the time with friends, and the school where he'll be going emphasizes that over the "academic" stuff, which he does on his own anyway. I'd much rather that, while he is in preschool, he spend the time just learning how to function in a group, and he can get all the letters and numbers and reading and writing from us at home, because that's what he likes to do in his spare time.

But as for hearing services, The Boy would receive visits, at preschool, from both the educational audiologist and the hearing teacher. The audiologist is there to check his hearing aids every so often and see that they are on properly and working. She is also going to arrange for a transmitter so that during teacher-directed activities, the teacher can wear a transmitter that will carry speech directly into The Boy's hearing aids. The hearing teacher will work with The Boy on understanding people more effectively, reminding how to look at people when he is listening to them (for lip-reading, too), and advocating for himself when he wants something to be clarified. It sounds pretty complicated to teach all of that to a 3-year-old, but...that's kinda her job, so hopefully she knows how to do it.

We will be having The Boy's very first IEP meeting on Wednesday, December 22nd. Unfortunately, Grandma will be away, but she will certainly look over the IEP and make additional recommendations, because that's what she does.

I was very impressed with The Boy over the past few days. His willingness to cooperate in clinical and evaluative settings has not diminished as he gets further and further removed from the constant stream of medical personnel that is cancer treatment life. He listened to me, he followed me to registration desks and offices and even to the bathroom whenever it was time to go. He likes the fact that the hospital has little tiny Boy-sized toilets.

I worried a bit about these appointments as his willingness to cooperate at home has been close to non-existent. He has wanted to be upstairs when I'm downstairs and vice versa. He has made messes and refused to help clean up. He had 4 toileting accidents today (one of which happened in the hospital cafeteria while I had the nerve to talk to someone else), which is a lot even for him. We'd been holding steady at 1 or so a day with the occasional accident-free day, so this is definitely a big step back. I'm just hoping that what friends who taught preschool tell me is true, that once he gets to school and sees that the other kids don't have accidents all the time and go to the bathroom when it's time to go, he'll get with the program. Or, Meatball will potty-train first and then The Boy will REALLY feel the pressure.

I do wonder exactly what it is that The Boy is hearing now and how he'll respond to having things improved for him in that area. It may be overwhelming. But he may enjoy the fact that the songs he hears have real words that he can understand.

I'm glad that we have everything started with this whole process and hope to see some positive results.

Tuesday, November 30, 2010

So...who needs what?

A humorous thought regarding an exchange with Musical Daddy this evening as I was preparing to leave for rehearsal:

He told me, as I said that I'd be leaving shortly but not yet, that I'd need gas for the car. I said I'd just go at that point to get gas for the car and get some of their iced tea at the GetGo while there.

When I got in the car, the tank was about...1/5 full. Emptied past the 1/4 mark but not at the point where it was about to hit the E. I looked at the miles that I drove from the rehearsal site and realized that *I* didn't need gas for the car. I had no problem driving 2.6 miles each way on a close-to-empty tank.

HE, on the other hand, would have a heck of a time driving 35 miles to work in the morning had I not filled up the tank.

I certainly don't begrudge him the fill-up. I'm glad to do it. If he asked me to get gas for the car every time he needed it, I'd do it with a smile. But just to be clear...*I* did not need gas this evening.

That's all.

Pictures, again!

Found a better way to share--here is the whole shoot.

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Saturday, November 27, 2010


We got photos done yesterday, and they’re already available online! Their security is better than it used to be, so for now I’m just going to provide links to the photos. They came out wonderfully.

I can’t believe how much the kids have changed.


The Boy

The Kids

Our Family

Wednesday, November 24, 2010


No one can pull at your emotions quite like children. Particularly your own.

On Tuesday, I was pulled repeatedly. And I was TIRED. But by the end of the day (and after having escaped the melée for a few hours to go to orchestra rehearsal), I promised myself that, rather than dwell on what an awful day it was, I'd sit down and write about my children. Not the "oh my goodness get down off the coffee table!" or "You're five feet from the bathroom and you can't be bothered to just sit yourself on the potty and go?" moments, because I already talk about those enough.

Of course, I didn't do that on Tuesday. I tried to do it yesterday but as my pies cooled, I was interrupted by Meatball, calling for nighttime milk. He has yet ANOTHER cold. You'd think that a breastfeeding toddler would have some sort of immunity to something, but then, he also spends an inordinate amount of time putting things in his mouth. We also need to do a better job, for our part, of washing his hands before he eats. The Boy is doing quite well in that department because he washes his hands after using the bathroom.

So now we're onto today, which is also Thanksgiving Day.

Rewind 1 year. We had just gotten The Boy out of the hospital in New Jersey for the last time. His stay there was unexpected, as was the timing of our move. We were a mess. Everything was awful.

Now? The Boy is better. That's the most important thing. And Meatball is happy and healthy and doing very well. They're happy. We're happy. Even though we're not yet where we want to be professionally, we'll be fine soon enough.

I love Thanksgiving, despite having a plethora of negative associations with it such as hospitals and illnesses. I love being able to spend the time in the kitchen concocting delicious food. It is therapeutic--everyone else knows that they'll get to eat it, so they entertain the children for me. I made pies--pumpkin, pecan, cherry, and apple. The cherry pie was with my own pastry crust, and the apple pie was from scratch, so I hope it's good. Pecan pie isn't that hard to make, as I found out. Turkey went in the oven this morning and will cook all day. Mom made stuffing and is working on sweet potatoes.

I'm thankful for my family with whom I will share this feast. I'm thankful for my parents for saving our family as they did when they took us in and continue to have us here. I'm thankful for my siblings for their help and for their being so generous with our parents' attention. I'm particularly thankful for my husband, who is an amazing person and an amazing father. And for my charming, intelligent, interesting children.

And nothing says "thankful" like a report of no more cancer.

I'm sure I'll have more to say later, and pictures to post, but right now I need to get to work.

Thursday, November 18, 2010

Sick sick and sick

Yesterday my mother was sick, Musical Daddy was sick, and I was sick. And the kids were perfectly fine. Today Musical Daddy went back to work and my mother and I are feeling at least somewhat better.

Fortunately, the children were very kind to us. Meatball spent more time than he otherwise would sitting in our laps, and The Boy was very good as well. They watched a LOT of television yesterday, and quite a bit today as well. We just had such a hard time functioning. Meatball napped for 3 hours in the middle of the day, and The Boy relaxed while I napped.

Meatball is just new territory for us. By the time The Boy was this age, he was already pretty sickly from cancer treatment. He wasn't too hard too keep up with. Not this one--Meatball ends up dancing on the coffee table if you turn your head for a second.

Musical Daddy and I discussed this issue, and I said I hoped that Meatball would get bored with it. Musical Daddy said that he'd probably keep dancing on the table through college (infer what you will, I guess) question was, would Meatball experience a dancing-on-the-table latency period?

Monday, November 15, 2010

David is NED!!!

No evidence of disease!! No tumors!

We're having cake for Grandma's birthday tonight. And pizza and pasta.

I also have a lesson to teach in half an hour. Not so much in the mood, because I'd rather just stay home, but you gotta do what you gotta do.

He cares not at all...

The Boy fell asleep during the ultrasound. He cared not a bit about the procedure. He did, however, enjoy the fish on the ceiling. Perhaps he is dreaming about fish.

More likely, he is dreaming about the cheese sandwich that, thanks to lateness down here, may very well not be his for yet another long while. Sigh.

I miss my sammich.

Here we are...

Let the "hurry up and wait" commence!

We are in the radiology waiting room along with a good chunk of the rest of the population. Including some angry babies.

If we don't have time for a cheese sandwich, I'll be mad. The Boy will flip his lid. Hopefully we will get in for the ultrasound and x-ray in short order.

Scans Today

Not scans...but it's easier to say than "chest x-ray and abdominal ultrasound." Hopefully those things will be clear and he won't need scans in addition.

Somewhat off-topic--kids don't care if it's your birthday.

I took The Boy out for pancakes, figuring that if he had a nice big pancake breakfast, he would notice less that he was required to have a late lunch. I left Meatball home with my mother, figuring that for 45 minutes he could sit and watch TV with her.

It's her birthday today, and Meatball puked last night's dinner all over her bed. According to her report, he didn't do it on purpose, either. When I got home, I dressed him, nursed him, and gave him some oatmeal, which he was all too happy to eat.

I did order her a cake...and I am washing her bedding.

Anyhow, I'm not too nervous about scans but at the same time...of course I'm nervous. Because all it takes is a little bit of something to grow wrong once again, and we're back in cancer-land. We're trying to be normal, and this is the time when we realize that...we're not, and we have this cloud that hangs over our heads. The Boy said his belly hurt last night, and of course we worried. He had to poo and that made it better, but even so...

It has been 7.5 months since The Boy was sent home from the hospital because we were DONE with chemo. We didn't know we'd be done; had we finished the whole treatment, we'd probably still be doing it now. Of course, had we finished the whole treatment, who knows what would have happened to The Boy?

This past weekend was an amazing Wilms Tumor Symposium in California, spearheaded by the Pablove Foundation. I haven't yet read about what was learned and what was discussed but apparently many of the big experts on Wilms Tumor were there.

The general feeling I get, based on what has been going on with other Wilms kids, is that The Boy would likely have been treated differently, and maybe should have been, but at the time, the doctors he had went with the advice that the experts were giving. It is tragic that there have been so few advancements in treatment but at least encouraging that more studies are being done and organizations such as Pablove are really greasing the wheels.

Tonight we're having pizza, pasta, and cake with my mother and my aunt, for their birthdays. I love cake.

Wednesday, November 10, 2010

Because we haven't had any bad news in awhile...

The Boy had his hearing test today. He was very cooperative. He played the games that the audiologist asked him to play. She was very nice and very helpful, and the tests were well-designed.

And there was no question that he now needs hearing aids.

He can hear us when we talk to him and he can hear the TV. But he doesn't have the high frequencies so much, and he has lost some of the middle frequencies as well at soft volumes.

We need a hearing aid appointment and an ear-nose-throat appointment, and then that's what we get.

We are also supposed to investigate alternate preschool options through the school system, which could jeopardize his starting kindergarten an extra year late.

And, since we're not sure if the hearing loss is complete from the Carboplatin, we will keep monitoring.

We were feeling WAY too home free.

Saturday, November 6, 2010

Over in the meadow...

We're watching this adorable little movie in which they sing this song. It's a counting song. And a very pretty song.

Our visit to Michigan has so far been pretty nice. Low-lights out of the way first: Meatball was a giant pain last night in terms of going to sleep and staying asleep. He was then a cranky boy all day today, which is out of character for him; usually he is a very happy and playful little guy, provided that he gets his sleep. I blame the remnants of his cold and the dry heat in the hotel room.

Musical Daddy picked up a cool mist humidifier that is perfect for travel--you take the thing and insert a water bottle. I'm not sure yet if I feel the difference.

The Boy hasn't been great with the potty today--4 for 7 with all of the misses being messy ones. Not surprising, because he isn't comfortable enough with the routine when he is clothed, much less when he is in a strange place. Good thing we brought extra pants.

Musical Daddy and I aren't feeling too hot, due to lack of sleep and dry air, and probably Meatball's cold. Other than that, we've had a great time.

First, we slept in. Thankfully. We gave the boys some banana and fruit bars to take the edge off and we headed out to Ann Arbor for some Bagel Fragel breakfast. This was a place that Musical Daddy and I frequented when we were living there. It was close to the music school area and close to where his apartments were located. The guy who owned the place recognized us and even remembered us the last time we visited. He has since sold the place, but it has grown since we were last there, probably 5 or 6 years ago. They expanded it into the next store area and added a TV and couches. It used to be pretty much only a take-out place. I can't tell you how many pesto chicken bagel sandwiches I ate when we lived there.

Next some sights around town. It's amazing how we feel like such strangers there, but that kinda happens when you get old and visit a college town. It was football time, too. An amazing defensive battle took place today as I heard...that is, if you believe that the only good defense is a good offense. Scores of 60-something on both sides, in 3 overtimes. Michigan won.

We got back to the car with screaming Meatball strapped to me. Fun. Both children fell asleep in the car, and we didn't really feel like moving them. So we sat in the hotel parking lot and watched a TV show on the iPod.

When it was lunchtime, we drove around the corner to Mr. Pita, another frequent favorite of ours. It's a great place that serves wraps and salad. Frequent post-gym fare--Champions Gym after school, followed by Mr. Pita for dinner. I enjoyed Mr. Pita so much I ordered trays of it for my recital. Which was over 8 years ago. Anyhow, I was really glad to have it. The Boy had pita pizza, and Meatball picked at a few things but wasn't that hungry.

We met a friend and his kids, who are older, at Marvin's Marvelous Mechanical Museum. It's a neat place--if you're in Southeastern Michigan and have any interest in old games and silly machines that do stuff (like the old fortune tellers, and instruments, and games), check it out. It is a decent arcade as well, in the style of Dave and Buster's, but smaller and more crowded. And with much more antique flair. The kids didn't really play together...but that's to be expected. Unless the older kids have a certain flair for dealing with little ones, they're just not going to. And the 10 and 7 year old don't have too much in common with the 3 and 1 year old. Except for a cute trip on the little old merry-go-round.

Naptime followed, thank goodness.

Dinner was at a restaurant with train decor, picked out by the friends we met there. We had a nice dinner even though Meatball was more than a little bit antsy and needed frequent walks around. The food was delicious, and The Boy was a gentleman. Great food and great service. It's called Station 885, in Plymouth, Michigan, if you're ever out that way. I highly recommend them. They even did a nice job of managing the food with the kids, such as bringing more bread and bringing the noodles as soon as they were ready.

One of our friends who was with us has a newborn daughter, just 4 weeks old. He's exhausted. I told him that it's just a season in his life and he'll get through it. Also, that things start to look up after they start smiling at you, and for her wife, it would likely be just a few short weeks until she will start to feel like she isn't ALWAYS nursing the baby, because they get more efficient as they get stronger.

Tomorrow's plans include breakfast with one of two friends, lunch with another old friend (old because I've known him for a long time, not that he's any older than I am), and a 4:00 chorus show. Then we go home.

The kids travel fine in the car, and The Boy was even fine about using the restroom when we stopped, but they don't take well to changes of scenery, especially Meatball. He also doesn't get the concept of hotel stays being fun and relaxing. The Boy is amused, I think, but not very secure in his surroundings in this strange place. Although HE got plenty of sleep last night.

Why not take a trip, I thought? We don't have much else going on in our lives to prevent us from doing so. And as the kids get older, they'll have a better time.

One of the things I'd like to do is to plan a longer trip that has lots of fun stops along the way. You 2 or 3 hours, then do something for an hour or two, then drive a few more hours, et cetera. And, preferably, family to visit with and stay with instead of hotels. Expense notwithstanding, the boys feel more comfortable in houses and have room to run around. This place isn't bad, as we're in a small suite and they do have some more space, but it's not the same as having several rooms to visit (and more toys with which to play, of course).

I'm really hoping that the stuffiness in my nose is from the dry room, but I'm not feeling too optimistic.

Hopefully we'll all have a better night.

Thursday, November 4, 2010

I want to go back to...


We're spending the weekend there, to see some friends and to see a small barbershop show. The show was the impetus for the trip taking place this weekend; the fact that there are friends to see makes the trip that much more exciting.

From Pittsburgh to the general Southeastern Michigan area is a 5-something hour trip. Might be closer to 6 with the kids and stops and such. Much more palatable than the 10 or 11 hours it would have taken from New Jersey.

It's been a tricky week, with Musical Daddy leaving the house long before dawn to go to his new temp job. It's a job that involves working with his hands, putting things together and lifting things. Very different from teaching music, or math. He likes the fact that it doesn't stress him out and the people seem to have their heads on straight, although he's not crazy about the drive or the early wakeups. Additionally, it seems like we've just had a lot of extra stuff going on this week. He isn't working tomorrow, which is nice. Instead, we're going to a Shabbat program at The Boy's soon-to-be preschool and then leaving for our trip.

But I'm getting ahead of myself. Tuesday morning, we visited this preschool program. It is a part of one of the Reform Jewish congregations in town. The Boy would be able to start in January. His class, with him, will have 3 boys and 6 girls. There are two teachers in the room, so a ratio of 1 adult for every 4.5 kids isn't bad at all for that age group. We stayed to check things out for awhile. The Boy did a puzzle at the table and played with those foam peg boards along with another boy. The class has some structured activities and some unstructured activities. There are two little toilets in the room, which fascinated The Boy but not enough to make him want interrupt his playing to try and go on one.

The teacher was very receptive. I told her about The Boy's medical history and about my current concerns with him. He is socially awkward and more than a little stubborn. And the potty thing...he's mostly there but not quite. He forgets sometimes if he is busy playing, and he is more likely to still have accidents when he is clothed. "Academically" he knows a LOT because he had the time to learn it with us and on his own instead of being able to go out and run around. The teacher assured me that the kids all get into a routine together, with procedures in general and with the potty in particular. They have certain times that they all try and go, and they also figure out that whatever they are doing will wait for them.

There are scholarships available, so this isn't going to cost us a fortune.

I liked the feeling of the school. I liked the idea that they focus very little, if at all, on "academics" for the 3-year-old preschoolers, and same goes for the next year. The kids are learning to spell their own names, but that's about all I could tell. They do projects and talk about holidays and of course they have a Shabbat celebration on Friday. The Boy loves that stuff and does it on his own; he needs to build castles with other friends and chase them around. I'm also pretty keen on being able to spend a bit of time with just Meatball. Although I fully intend to devote some of that time while The Boy is in school to a friend who needs the time and the company.

Meatball is saying more and more words every day. He'll echo just about anything (so we need to watch our mouths!) but even more amazing is the stuff that he says without being prompted. One of the highlights of yesterday and today was him saying the word "potty" and actually sitting on the Elmo potty, although with clothes on of course. Potty training isn't TOO far away for him, believe it or not.

I'm doing laundry and have to pack for us all. We're very excited!

Saturday, October 30, 2010

Let the Sugar Rush Begin!!!

Today was the Make-A-Wish Halloween party. It was an awful lot of fun. They had a banquet room at a hotel with a DJ and, of course, LOTS of treats. Popcorn and chips at every table, plenty of cookies, cupcakes, and funny-colored beverages, and balloons everywhere. Disappointing food choice at first--little sandwiches with all kinds of pepperoni and ham and such on them, and that was the only option. Fortunately, they ran out, and they had to get pizza. Cici's to the rescue.

The boys had a great time. They wore little horse costumes. Pictures to follow.

Both boys enjoyed dancing and were thrilled to see Elmo's "surprise" appearance.

We were reminded of how lucky we are. Obviously, "lucky" kids and lucky families aren't the ones who get invited to this party. But there were many families whose children had a lot more issues than ours. Make-A-Wish isn't just for kids with potentially terminal illnesses; I'm not sure exactly to what it extends and who else is eligible, but it wasn't just cancer patients and cancer survivors at this party, not by far. There were several kids in wheelchairs and several others who also had speech devices (like DynaVox).

Major snaps to a father we saw who turned his son's wheelchair into Thomas the Tank Engine, complete with Thomas face on the end and an engineer hat for the little boy. He obviously worked REALLY hard on the presentation and they got a lot of positive attention for it.

At the end of the party was "trick-or-treating" around the room, which I didn't get to see because Meatball was so done by that point. He was overstimulated and needed milk and a nap.

Musical Daddy had some coffee in the hopes of skipping his nap and getting himself to bed early tonight and tomorrow night. He starts a temporary job on Monday where he has to be at work at 7 AM, and it's about an hour drive. Fortunately, he'll get home by 4:30.

Tonight we're going to make pumpkin pie from real pumpkins, bake the seeds, and then carve jack-o-lanterns. Tomorrow? We trick-or-treat. The kids have never been, because The Boy has always been in the hospital or low-count. I think the first Halloween ever for him, when he was 2 months old, was on a Tuesday night. Musical Daddy was at chorus rehearsal and I was home with The Boy handing out candy to trick-or-treaters. Someone has to, right?

Not sure yet if we'll do the stores, the neighborhood, or both. The stores always do a nice job and it's supposed to be "safe" for the kids to go to the stores rather than the different houses. On the other hand, going to houses in our neighborhood means we can possibly see some friends.

I'll wear a costume. Musical Daddy has a good one (although some of you who know him will say that it's cheating). I'll let him show it off.

Tuesday, October 26, 2010

Image problems: who is to blame?

I've become a loyal reader of Single Dad Laughing, a blog written by (obviously) a single dad, who has a preschool-aged son. He writes plenty of funny posts, but his "famous" posts are all written about very serious subjects--bullying, self-image, and mean or negligent parenting. If you haven't checked him out, you should.

Today's post also talked about a serious subject--the major self-image problem that runs rampant among women of all ages. He makes a list of outrageously hurtful statement about women, statements that women themselves have said. He calls upon men to shoulder the blame for this, saying that even if men say nice things to the women in their lives, men perpetuate the idea that "perfect" women in magazines and the "perfect" women that walk by and catch their eye are really what men are after.

Single Dad Laughing does an excellent job of presenting this rather sensitive topic, and he issues a call to action for all men to appreciate the women in their lives, and maybe to avoid staring at the girl who is half the age of his wife and wearing half the clothing.

What he leaves out is that there is enough blame to go around. In previous posts, such as the one about bullying, he says that ANYONE can stop the vicious cycle and take a stand. In this post, he pins it all on men to do the work, and mostly for their wives and girlfriends and female friends. It's a little inconsistent, and we would do well to follow the advice that he usually gives, which is that everyone should feel empowered to make change.

Women are notorious for overestimating the thought processes of men. Sorry guys, but I'm on to you, and you're really not that complicated. If a man says that he isn't mad about something, then he probably isn't. If he says that he wants to eat this instead of that for dinner, that's probably what he's going for. Women, on the other hand, will say "no, I'm not mad" and be seething in the meantime, and then get more angry when their significant others don't just KNOW that they're still angry. Not only that, but that their significant others should KNOW how to make it up to them. Women assume that men think that way, and I'm just not buying it. They're not either--men are pretty face-value with their thoughts and emotions.

So if a man says that he looks at certain pictures in certain magazines but is also attracted to his wife, and that there is a clear delineation between the two, believe him. He doesn't really have a reason to lie, and more importantly, he doesn't have the imagination.

Some women have fantasies too. They can dream about a man who is excellent with the children, doesn't blanch at changing a diaper, does almost all the dishes, takes out the trash, loves to sing, and looks pretty darned good for a guy in his mid-thirties. Oh wait--that's my husband. Sorry, girls.

Whether a man reads certain magazines or watches certain movies, and how his female partner feels about that, is definitely up to them. Some women are fine with whatever their husbands/boyfriends choose to read and look at; others prefer that men limit themselves.

Of course, the issue of magazines and movies and websites is just scratching the surface. Single Dad Laughing also talks about men happening to catch a glimpse of something that they like on a woman other than the one with whom they are spending their time. Gentlemen, that's just ridiculous. Don't get caught. Ladies, too--I get that we're married and not dead, and thus can appreciate the scenery, but be sensitive to your companion.

Back to the original question, though: are men entirely to blame for the fact that women feel so insecure and don't love themselves as they should? We can extend the blame to another group of men, in addition to the husbands and boyfriends, and that is the fathers. Single Dad Laughing talks about how important it is for fathers to make their children feel worthwhile and loved. A woman who grows up with a dad who is always criticizing, or a dad who is absent and in her mind doesn't even love her enough to stick around, will likely gravitate toward that kind of man. So she can then be made to feel inadequate just like she was when she was growing up. So, gentlemen, parents of daughters and sons, if you'd like to improve women's collective self-image, start by treating your daughters right. And show your sons how to respect their mothers, because you do.

Mothers are certainly not without blame in this vicious cycle. Women who are constantly dieting and always watching what they eat to the point where they just don't enjoy meals or food-related celebrations anymore are teaching their daughters that women don't deserve to enjoy food. Women have to work so hard to be thin and perfect because otherwise, they're worthless. And yes, ladies, you're teaching that to your sons and daughters.

That's not to say that there is no place for watching what you eat, knowing what's in your food, and eating sensible portions. The best way to teach your children how to eat well and have a healthy attitude about food is to cook for them and with them. Serve them good, REAL, healthy food. Let them know what one serving is supposed to look like, and let them eat that first. Then, if they want more, and their bodies need more food, they'll eat more healthy food. Keep good healthy food in the house and take your kids grocery shopping to pick out their favorite fruits and veggies. But every now and then, get that container of ice cream and serve it for dessert. Go out for a meal from time to time and order the pie when you're done. Go to a party and try a little bit of everything. Single Dad Laughing has a post about this subject too--he said to throw out your scale and eat what you enjoy, when you're hungry, and exercise when you need it, and break the vicious cycle of getting depressed over a number.

Mothers, and fathers: help your children. Encourage them, be there for them, and help them correct mistakes. A bad grade does not indicate that the child is bad.

Women: get out of your own way and get out of your head. If you constantly feel like you're not good enough, not pretty enough, not thin enough, don't clean the house well enough, don't sing well enough...maybe you need to reconsider the people with whom you spend your time. Yes, that includes your husband or boyfriend. Yes, that includes your parents. Yes, that includes your best girlfriend who was always just a little bit thinner and just a little bit prettier, in your mind, and she knows it too (in case you're wondering, no, I don't have such a character in my life). You can help break the cycle.

Men: if you really think that you can get the girl on the cover of Maxim magazine or anyone like her, then I guess your name is Derek Jeter.

What? It isn't? Oh well, I guess you'll have to come back down to reality and accept that if we have to put up with your muffin-top love handles and your hairy back (and no, my husband doesn't have a muffin-top or a hairy back, but plenty of men do), then you can love us for who we are. In turn, we can love ourselves for who WE are and project the image to YOU that we're worth it. There's a better cycle to perpetuate.

I applaud Single Dad Laughing for taking on the absurdity that is the media image of the perfect woman. He really gets deep into this topic of men and the potential for out-of-this-world expectations of women. There was a great running theme on Scrubs (never a bad time for a Scrubs reference) regarding some of the women on the show and, as they enter into relationships, their discovery of when it becomes acceptable to let the crazy out. Because, you see, even the most confident and put-together woman will always have doubts, always have guilt, always be hyper-critical. But when she is with a man who loves her as she is, and is okay with her letting a little crazy out from time to time, she can get past the crazy and not let it rule her life. A man who criticizes, a man who thinks that there's something wrong with her just because she doesn't clean enough or doesn't put out enough or pays too much attention to the kids or whatever else, that's a man who is perpetuating the shame cycle for her.

The bottom line is that we all need to take better care of each other in order for everyone (in this case women but men can fall prey to this as well) to feel valued. It starts with parents letting their children know that they are worthwhile. It doesn't mean constant cheerleading; it means making some time for them, listening to them, finding out what interests them, going to their recitals and bringing the whole family for support, giving them space as they need it, and helping them decide what to do with their lives. It continues with girls not falling into the traps of eating nothing but celery for a week because the other girls are doing it to lose weight before the big dance. And boys getting to know girls as people, and treating them well because that's what they see at home. And then, men and women (or men and men, women and women, but I always got the feeling that there was a little more candor in same-sex relationships) entering into relationships honestly and not feeling like they have to hide everything about themselves.

I will close this with a quote from Gandhi. A little pretentious, sure, but very appropriate: "Be the change you wish to see in the world." Don't just wait for other people to improve the ways in which they relate to each other and to you. Start now. Love yourself, and love others without stipulation.

Sunday, October 24, 2010


We call them experts for a reason. They are supposed to know exactly what they're doing, and they are supposed to have a wealth of experience on which to draw. We consult with experts regularly. We rely on them to provide services. The experts do their jobs, and we trust them. But wait--is it really the best idea to rely on experts for everything without taking it upon yourself to know what you're asking for? And, if you're not an expert at something, is it really in your best interest, or anyone else's, to choose not to do what you CAN do in that area?

The example that dwells with me frequently is when adults who do not identify as singers pretty much refuse to sing anything and on the rare occasions that they do sing, they apologize for it or defer to other people who are experts. Not that I'd want just anyone who can carry a note in a bucket to be entrusted with the directorship of a chorus or a studio full of vocalists, but it is certainly within the realm of possibility that everyone be able to sing and not feel ashamed. It's certainly part of my mission as a music educator, even if I end up teaching orchestra again as I would prefer. People shouldn't feel as though they need to be experts to sing.

When it comes to issues of medicine, it is very irritating to doctors when the patients think that they know more than they do. After all, they're the experts, right? Just because we can read about diseases online doesn't necessarily mean that we have them. I'm recalling the hypochondriac character on Scrubs who decided that he had Yaba virus, which made no sense, and the doctor thought he was out of his mind.

However, it IS our job, even though we might not be medical experts, to be involved in our health. We need to eat well, get off our behinds, and be forthcoming with any information about abnormalities when talking to our doctors. We need to keep track of medical data for ourselves or whomever is in our care, because even though they go back and check it, it's nice to have as a talking point. We need to empower ourselves with as much information as we can get.

So instead of being either an annoying hypochondriac who spends too much time on Wikipedia or a person who just sits there and waits for a magic drug, we should take charge of our own health in the way that works best for us and our families.

In other areas of life, we'd do better if we knew what we were talking about. Even if we choose to pay for a certain service or seek consultation about something, it helps to be more informed. If you know a bit about cars, you can better describe to your mechanic what problem you have. Even without extensive knowledge of agriculture, you can still inform yourself about food production practices and decide what types of food you'd prefer for yourself.

There are experts in child development, too. You don't need to be one, but if you have a child, it's a subject that should be on your mind. It is remarkable how many parents think that their children are being bad when, in fact, their children are behaving appropriately for their age, and the parents expected something impossible for them (I'm thinking of toddlers being made to sit still and quiet at a restaurant with leisurely service practices and the parents are upset when the child fails to comply, or of toddlers knocking stuff over when it's right in front of them).

We need experts in our lives. It is important that certain subjects be addressed correctly. But we can do the experts a favor and know a bit about what we need before we go to them. Furthermore, we should feel free to take upon ourselves the "non-expert" tasks in a field. We can't fix our hearts or prescribe medicine, but we can learn about the lifestyle choices that protect our hearts. Not everyone can play an instrument, but it wouldn't hurt if everyone knew what they were. And, like it or not, we need to be experts on our own kids.

Are you an expert in something? Do you want to be?

Saturday, October 23, 2010

Alexander and the List

Little Alexander of Alberta, CA had what they thought was medulloblastoma, which is a nasty enough type of brain tumor. Instead, it was something called "Embryonal Tumor with Abundant Neuropil and True Rosetes" which has no cure. Alexander was the 36th kid in the world to be taken by this type of cancer.

Alexander was around 2 years old when he was diagnosed, and still breastfeeding. So, Alexander was breastfed for his entire life.

When his parents found out that there was nothing they could do, they made a bucket list for him. They went on vacation. They went on trips. They did everything fun that Alexander would have wanted to do until he just wasn't strong enough, and then they had people come visit until they couldn't see people anymore.

He died in the middle of the night, in the family bed.

I teared up a bit when I read that it was time; I teared up again this morning when I read that Alexander was gone.

Since starting on this cancer journey, I've encountered so many people, such a long list of parents and children, who suffer. Who "only" suffer like we did and endured the hell that is cancer, only to come out on the other end with a happy ending thus far. Who had an easier time than we did but still hurt and are still picking up the pieces. People who are still suffering.

And then, there are the angels. I remember the first angel on the Wilms list. Her name was Samantha.

You know, every now and then I think, I don't HAVE to stay in touch with the cancer community. I could close the door on that chapter of my life and save myself a lot of heartache. I don't HAVE to get close to friends on the internet that I'll probably never meet. Alexander's mother was someone I "met" through a breastfeeding/natural parenting community, and when her son was diagnosed, everyone told her to talk to me. I don't HAVE to be so "aware."

Wait--yes I do. I can't "un-see" everything that I've seen throughout the cancer journey, even though I haven't "seen" everything, since we're "lucky" and didn't have to. I can't pretend that there aren't children dying, leaving behind heartbroken families. And I can't always find people in "real life" that have any clue. It's a long list of people that I "know" as a result, but I'm glad that I know them.

So, Alexander, I hope you did everything on your bucket list. I hope you know how much you were loved down here even by people who never knew you, and I hope you're having fun up there in heaven. And I hope Pablo is chasing you around and playing with you. I also hope that the idea of heaven and little children playing is comforting to someone because I even had trouble writing it and even more trouble believing it. Cancer sucks.

Tuesday, October 12, 2010

Cheap and Easy

By now I'm sure you've heard of The Handbag Thing on Facebook, where women were setting their statuses to describe where they typically put their purses, except they would write something like "I like it on the kitchen table." Obviously, if you didn't know what they were talking about, you'd think something other than a purse on a kitchen table.

The link that I posted above really speaks to me about this particular "awareness" movement and about much of the breast cancer campaign in general. The widespread use of the color pink is a great way for people to say they're doing something to help fight breast cancer when, in all likelihood, they not only are contributing next to nothing but they also think that making a token pink gesture gets them off the hook for both cancer causes and feminist causes. Particularly since so much of breast cancer campaigning is cute, girl-power-y, sexual, and everything that actual breast cancer isn't. A quote from a patient, from the article above: "Cancer is not pretty. It's not pink. And it's definitely not flirty. It's a deadly, bloody, nasty disease, and it's killing me."

I don't need to tell people who have fought other cancers, particularly those of us who are parents to pediatric cancer survivors or angels, that the cuteness of the breast cancer campaign draws far more attention than any other cancers can hope to attract. And it's impossible, because pediatric cancer is not "cute." And prostate cancer? Well-funded in the grand scheme of cancers, but if someone wanted to raise awareness about it, it would be mighty awkward to try and make prostate exams cute.

While discussing this with a friend (with whom I pretty much disagree about everything), he asked me very simply: what would I do differently?

Ladies and gentlemen, in response to his question, I have an assignment for you.

When you hear about someone that you know who has been diagnosed with cancer, or has a family member diagnosed with cancer, do something for them. Make a donation to an organization that researches their type of cancer, in their honor. THEN make a donation to them in the form of a drugstore gift card or a gas station gift card. If you know them well, offer to take their laundry to the wash and fold or bring them meals to freeze for later. If you know them really well, you could even help clean their house. Because after spending all day at the clinic or in the hospital, housework is just not a high priority, but germs are especially problematic to the cancer patient.

If you'd like to do something to help pediatric cancer or other cancer patients, and you don't have a ton of money, buy some consumable art supplies, particularly when they are on sale at Staples, and donate them to an oncology playroom. Play-Doh is also considered a consumable supply because it can't be shared by sick kids. If you have a little bit more money, call up an oncology clinic and ask them if they have a wishlist of things that they'd like.

If you really think that pink ribbons are raising awareness, then put a quarter in a jar every time you see one and at the end of October, send that money (in check form) to Susan Komen or whatever other cancer-fighting organization you choose. Also, check the organization to which you donate and make sure that you want your money to go there.

Instead of just wearing "save the tatas" or "feel your boobies" shirts, encourage other women to do everything they can to take charge of their health.

Oh, and don't assume that every woman who has had cancer had breast cancer. My mother had fibrosarcoma, which happened to be on her back. She still went through chemo, and radiation, and still lost her hair.

Think about it, everyone. Cancer sucks. But if we dress it up all pretty in still sucks. Get up and DO something.

Saturday, October 9, 2010

Failure to Launch

My plan of trying to substitute-teach in a bunch of districts is slowly getting off the ground. I've been signed up with one district for a few weeks but they don't actually have any work for me, like, ever. I'll have at least 2, maybe 3, districts in addition to that one by the end of next week. Then I actually have to start getting up out of bed and working. Remember that I'm not necessarily doing this for the money; instead, I'm doing this for the networking and recognition. Substitute teaching pays peanuts, most of the time, but if I can get people familiar with me, that at least takes care of one of my problems that hindered my getting hired this year. The other two I can't do anything about. I have an advanced degree, and I have experience. Really, those two things equal one problem--I'm too expensive.

Now, onto more important things: the children got the BIG shots on Monday--MMR and Chicken Pox. The Boy developed a high fever on Wednesday night and it only recently seems to have broken. The doctor saw him again Friday morning and said that he likely had a more intense immune response.

Meatball's only major issue since Monday is that his sleeping is abysmal. Which becomes a major issue for Mommy. I shouldn't say that; at least he IS sleeping. He's just getting up every 2 hours until 3 AM, at which point he may or may not sleep until 7. Not bad hours for an exclusively breastfed cosleeping infant, but Meatball is neither cosleeping nor an infant. Not for lack of trying; if he'd stay in bed next to me, he could nurse nonstop for all I care. Meatball is all about his own space. One of the nights this week I did get to stay with him for a little while, but 99% of the time, he is still awake after nursing and just wants to be put back to bed. When he gets up, I give him a minute to be sure that he really is getting up...then I drag myself zombie-style out of bed to tend to the needs of the little Meatball. Who also HATES to have wet diapers so he gets changed once if not twice at night. I just hope that he's growing, or something, and that I can get some sleep eventually.

Another point of interest was that Meatball apparently has low iron. Not too low, and probably something that we can address through diet. He'll have beans every day and more red meat. Yum!

Hmm...perhaps some sleep is in order. There's always time for blogging later, but sleep is a precious commodity around here.