Tuesday, March 31, 2009

Overkill? Justified?

We go to Shriners in Salt Lake for Brody's surgeries on his hands and arms. In order to avoid the 13 hour drive, we fly there.

I just read that, when we fly out of the Salt Lake airport April 25, we will be subject to a comprehensive body scanning security device. In a closed-door room about 100 yards away, a computerized image of the person appears on a screen, and a Transportation Security officer looks for items that would be unusual for a traveler to possess. The TSA officers have wireless devices to communicate with each other about whether it's necessary to hold a traveler back in order to check their right back pocket, for example.

Salt Lake City is one of six cities in the United States — including Tulsa, Okla.; Albuquerque; San Francisco; Las Vegas and Miami — in a pilot program using the units. The federal government will analyze passenger data after six months and determine whether to put more units in more airports.

At this point, it's voluntary, not mandatory. Nevertheless, the American Civil Liberties Union wonders whether travelers who volunteer for the body scan really understand what they're consenting to. According to the ACLU, the body scanning technology could project images that shows evidence of mastectomies, colostomy appliances, penile implants, catheter tubes and the size of breasts or genitals.

Of course, no cameras or cell phones are allowed in the viewing room, and the TSA says that there is no way to save the images.

I recognize the value of detecting ceramic or plastic explosive devices, I do.

It's just that it seems incredibly invasive. See for yourself:

Once you're done doing this:

This is what the TSA sees:

As a mother to a son who has a unique medical conditions, I'm going to avoid this scan. As a woman, I'm going to avoid this scan because it's invasive and just plain creepy. I know my husband would probably love to do this scan, but only if he could also see what he looks like (and the traveler will not be able to see his own image).

So, would you submit to this kind of scan, in place of regular old metal detectors? Or should this kind of screening be used in place of a body cavity search, only when there is probable cause for such searches?

Friday, March 27, 2009

Wednesday, March 25, 2009

Pictures of thumb pollicization

I realize these are badly lit and out of focus pictures, but I wanted to post these.

This one is 4 weeks post op. The stitches were still gruesome. Not as gruesome as the craniosynostosis surgery, but still.

And this is 8 weeks (almost) post-op. Stitches had dissolved (except for one). He's not really using the new thumb, for a variety of reasons including that his right hand has been in a cast since January, he is left-hand dominant, and his tendons were tight to begin with. I think when he has the thumb pollicization surgery on the dominant left hand in late April, and is forced to utilize his right, that's when we will see vast improvement in him using the thumb.

Oh, and here is a photograph that I think is adorable. I was trying to take his picture, and I said, "Brody, let me see your thumb, hold your hand out" and this was his reaction.

Yesterday, he was on our bed, reading a variety of books to himself, and Jeremy and I just watched him from the doorway, silly lopsided grins on our faces. I could watch him do that all day. He combined Brown Bear Brown Bear with Jamberry, which became "Jahm behwee, jahm behwee, what YOU see?"
I'm having one of those days when all I want to do is leave work early and take him home to snuggle.
It helps not at all that Denver is scheduled for 8-15 inches of snow tomorrow. Like I need more temptation to stay home.

Tuesday, March 24, 2009

Observations from a public shower

One of the things I dislike is my inability to exercise anymore.

And replace "inability" with "refusal" and that statement would be accurate.

I commented about this phenomenon to someone the other day, and he said "You are waiting for some great motivation. You are waiting to work out until working out is pleasurable. Well, guess what? Exercising is not fun. By definition, it's strenuous. But you still have to do it. It's a chore. No one likes it. Doesn't change the fact that you have to do it."

Ok, that's not an entire quote, but that's a paraphrase of what my friend said.

It was like a light bulb went off over my head. I don't have to like working out.

Now, in truth, my Aussie friend P has been saying this for years. She hates working out, but she does it religiously. And she looks fantastic.

For some reason, though, having my opinion validated that working out is not fun has helped me. To work out. Why? I have no idea. Because I'm mental, probably. Maybe because my mother always talks about how much she loves apples and eating vegetables all the time. And my one sister who adores running and complains how sad she is when she can't go running because her knee is sore. And my husband who loves lifting weights and sprinting on the treadmill.

Give me a break. I love playing tennis and horseback riding and hiking, but the gym form of exercise is dead to me.

Regardless, I joined a gym today. I now workout during the lunch hour.

It's quite a nice gym. The kind with a sauna and a steam room, and hair dryers and mouth wash dispensed in teensy dixie cups and lotion and hair gel and towels, the kind where the staff, genuinely or not, wish you smiling hello's and goodbye's, and the kind with free coffee and tv's and q-tips and curling irons.

And showers.

I went during a busy time, and I was not surprised that there were many other women in the locker room at the same time as me.

I don't know if it's because I'm from the mid-west, or I'm Catholic, or just a plain ol' prude, but I hate showering with other people. It's the one drawback to this gym: the showers are set up in one sort of long room, 8 shower heads, no dividing walls.

There are also 4 showers off to the side with curtains, but (a) I will not admit I am not confident in my appearance and use one of them; and perhaps more importantly (b) when I have used them in the past, the shower curtain static-clings to me and I can never get clean enough after that.

As a result, I was in the shower today with 3 other women. There is nothing good about that except, I suppose, we didn't waste any water and we are now all clean.

But it's weird. I know that as a new gym person I will have to become accustomed to it, but I don't think I ever will.

It's weird. As part of my new self-validation, I will say it again: it's weird to shower with strangers. But oh dear god, it would be more weird to shower with people you know from work. I shudder to think of showering with a judge I have to appear before. Good. God. I think I'd vomit.

At any rate, I still managed to muse about a few things:

~I have quite nice ankles. I am not prone to cankles. That's a good thing.

~I have quite nice hair, eyebrows and eyelashes. I like them very much.

~Unfortunately for me, what was a layered bob hairstyle in September 2008 has now grown into a sad imitation of the Rachel from the 1990s. No amount of styling changes that fact. I just have to wait for it to grow more.

~I need to dye my hair again.

~I can't wait for the French Open to start.

~I need to sign up for a tennis league.

~I wonder if anyone else here has noticed how long it's been since my last pedicure.

Friday, March 20, 2009

A new kind of spring for me

I was raised to be independent.

To stand on my own two feet, and to never need help and never need anyone.

And never admit I needed help or anyone.

Which is not to say that I never asked for or received help. I did and I do.

But it has become increasingly clear to me that I don't do it enough. Or smartly. I think I've warped the basic concept a bit.

I remember when I was first living with my husband, and he asked me to help him hang up his shirts after he did his laundry.

I looked at him like he had two heads. "Do it yourself," I replied, appalled that he'd even ask. His arms weren't broken.

Years later, we talked about the differences between us in this realm. He said growing up for him, he always asked for help for whatever he needed and there was no guilt or shame in the asking. I explained that I thought it was a sign of weakness for a person to ask for help. Even with shirts or moving.

When B was born, we were overwhelmed. More specifically, I was overwhelmed. I felt like I was treading water in the middle of the Atlantic. I didn't really talk to my husband about it.

We talked about our grief at losing the "healthy perfect child," and our fears for B as he grew up, our fears he wouldn't grow up, but we never talked about the practicalities. All the extra services we'd need and how we would get them, coordinate them, pay for them.

J would try to bring up PT and OT, and I'd shut him down. He's bring up finances and budgets, and how are we going to pay for medical bills and also diapers, and I'd shut him down. What's that bird with their head in the sand? That's me.

Which I have only recently begun to understand. Which is shocking because I didn't realize I was such an avoider of unpleasantness.

When I discovered that about myself, I was stunned. Isn't that funny? It seems odd even now that I'd be surprised about such a glaringly obvious trait. I looked up why people are procrastinators and in short, either they procrastinate because they don't like the feelings associated with the task being avoided, and/or they don't think they are entitled to be happy and want to punish themselves.


I am definitely the former. I hate that feeling of being out of control, which is how you feel when your child is wheeled into surgery, or you stare at thousands of dollars in medical bills, or watch your child play with other kids and wonder. . .

But now I'm really wondering if I'm the latter, too. Which is an odd notion. I love me, don't I? But maybe secretly, I don't. Or not enough. I don't take care of myself. Is that why?

For example, something very frustrating happened recently, when I read a letter (can't give more details). I don't know what happened to my face when I read it, but J saw it, and was instantly all over me asking what was wrong. I told him, eventually, and he comforted me and made me laugh about it.

Which was really a lovely thing.

The unfortunate thing is, if J hadn't been in the room, I never would have told him about the episode. I would have internalized it, and let it eat at me and fester.

Not a very healthy way to live. Or conduct a marriage. Which is sort of very mental, I think.

Another example. Services for B. I don't frankly know if he gets some or not, because he qualifies or not. But I've been the one doing all the care coordination and scheduling and deciding what to do next for what and when. But I've been wondering how or where or who would give B PT/OT for his thumbs.

In the middle of my epiphany that I don't ask for help even when I need to, I received a letter from our county health services asking if we wanted help for B. Well, that's timely, I thought.

I called the number and spoke to a sincere, genuine nurse who works for the county. She sent me the forms and I filled them out. A care coordinator will come and see B, examine him, and figure out what he needs. That person will figure it out. I don't have to. Isn't that incredible? That's a great service to have. It's time now that we utilize it.

The frustrating letter issue: we are consulting an expert, and I'm letting her handle it.

These are not big accomplishments, I realize. But they represent enormous leaps for me. Asking for help from people, even when it's their job and you're paying them to do it, is something that has become foreign to me.

(I think one reason my husband was drawn to me was that I never seemed to need anyone or anything: I did everything on my own. I think it actually caused a [now healed] rift in our relationship when I and he realized (at separate times, of course) that I was not that person all the time).

So I'm admitting the following: I can't handle everything by myself. I can't negotiate the health care system. I can't pay everything right now. I can't process stress in any healthful way. I don't understand health insurance and what is covered and not. I ignore problems with the hope that they disappear. I worry all the time. I don't sleep well. I don't tell anyone everything that is inside my head.

Spring resolutions:
I will learn to ask for help from appropriate resources.
I will tell my husband when something keeps me up at night.
I will learn that asking for help - even from your own hired help - does not make you weak or needy.
I will not ignore issues that need to be addressed in any form.

Monday, March 16, 2009

Nobody cared

The setting:
The new preschool, this morning.

J and I walked in with Brody, extra clothes, blankie, diapers and paperwork in hand.

I handed the teacher 20 copies of the letter (which I revised slightly still more to remove all of the "You should tell your child this" references), and explaining to her all about his hands. . .

She didn't care.

The other kids didn't care.

I mean that in the best possible way.

The teacher cared in that she listened to me.

But, still. No one thought his hands were "an issue" at all.

I watched him eat his cereal, and the other kids are just as messy with spoon and milk as he is.

Are we making this a bigger deal than we needed to? Are we creating a spectacle? Like some of the commenters said to the last post, not many people notice. Still, I'd rather have the correct information out there rather than deal with any number of inappropriate questions.

I talked to the director, and we discussed how Brody might need potty training help because he can't practically do the necessary clothing removal.

And I cautioned the teacher that Brody is not the best climber because he has low muscle tone.

And then watched as he climbed up the ladder on the in-room jungle gym (and down the slide) 14 times. He's not as sure-footed (sure-handed?) as the others, but he gets up and down.

I also discovered that I would not be adverse to being a teacher in a toddler room. Well, at least for an hour a day. With two other teachers and I wouldn't have to do diaper duty.

I stayed for about an hour, and Brody was having fun: new toys, a slide, trucks to ride on, new friends. But he still cried when I left.

Giant teardrops and loud sobs.

I called later and he had stopped crying.

I'm going to get him early.

Thursday, March 12, 2009

A call for editors

As I mentioned Monday, I'm drafting a letter to B's new preschool explaining his hands. I think there is a lot of natural curiosity, and I'd rather answer parents' and childrens' questions in an upfront way, rather than one day walk into daycare and have a teacher ask me if Brody has Downs syndrome in front of everyone. (Yes, that really happened, and that was after Brody had been there for a few months. I was shocked that the assistant director would not be more observant, or you know, read Brody's file).

I found the letter on this website, which I was excited to learn about. The draft on the website, however, is a bit condescending in tone. I've tried to eliminate the condescension, and answer some basic questions about why his arms look the way they do.

I could really use your assistance in editing the letter and getting your gut reaction to it if you received it. In the letter, I do not mention Vacterl, because that would require sharing a lot of information about B's medical status that I'm just not willing to give out to parents of other children (the preschool has it, however). Really, please post your comments. I have permitted anonymous comments just for this reason. I want your honest responses. Here is the letter:

March 16, 2009

Dear Friends,

Our son Brody is a new classmate in the 2’s room at xxxx preschool.

We’re writing this letter because many of Brody’s classmates will probably be curious about his arms and hands, and we want to make sure that everyone is comfortable with his limb difference.
Brody was born with bilateral radial club hands: specifically, he was born without the radius bones in both forearms and without thumbs. Thanks to Shriners Hospital, he has had several operations to try to help straighten his arms (which do not like to grow straight), and in January he had the first thumb pollicization surgery, in which his right index finger was moved into thumb position. In April, he will have the same surgery on his left hand. In an effort to satisfy natural curiosity, I'd like to tell you a little bit about Brody.

First of all, this is the way Brody was born. The doctors do not know how or why, but the latest research shows that Brody’s arms were probably growing this way approximately 35 days into the pregnancy. We’ve had luck explaining this easily to kids as, "That's the way Brody was born. His arms didn't grow quite right when he was in his mommy's tummy." Some children hear the physical explanation and go about their business without second thoughts. Sometimes, though, kids might want more details.

We’ve learned that the easiest way to help a child understand something like this is to remind them how we are all different from each other. We have had success talking with kids (Brody’s cousins and other classmates) by pointing out the obvious differences: hair, eyes, glasses, height, skin color, size of feet, etc. The list is endless. It's also a good idea to explain that Brody’s arms are not broken, painful, shameful, sad or frightening. They are simply different.

While Brody’s arms and hands are unique, Brody doesn't consider them “special” and we do not refer to them as such. Sometimes children will also be concerned about how Brody will do certain things with his unique hands. I usually remind them that he does all the same things they do, just in different ways. Brody has never had radius bones and 10 fingers, so he learns to do everything with what he has (and then shows us how he does it).

Once you get to know Brody, it's easy to forget he has unique hands. He adapts easily. He feeds himself, likes drawing and playing catch, loves Play Dough, washes his own hands, and wants to build towers with legos on a daily basis. We are teaching him that he should be proud of his “new thumbs” (as we are) and he will probably show them off if you ask. There are tasks he gets frustrated with but most of the time he takes challenges in stride and manages creatively.

I just wanted to let you know that we welcome conversation about our son and we look forward to getting to know you and your children.


Tuesday, March 10, 2009

Label whore

I just thought it was a scandalous title for a post. It's really an update to label-gate from yesterday.

The pediatrician called me. He was lovely. (Although he really must be related to Harold Ramis, even his voice is like him). He said the developmental delays have to do with his hands. He said the hands fall under fine motor skills, and that's why he checked it. (He also said that Brody is beautiful. Which I knew, but I love a doc, a male doc, who can say that. I bet he says it to all his parents, and I don't care a bit, because I know when he said it about B, he really meant it).

Looking at Brody's fine motor skills, he can't dress or undress himself (yet) and he is not so good at scissors (really hard without thumb). So I guess I don't feel so bad about the label anymore. Because I (very reluctantly) acknowledge that it's (somewhat just a little) true. What bothered me about it before was that I was thinking about his gross motor skills (I am a negligent parent and just learned the difference between fine and gross today).

Does that make me a label whore? (Ahh, a tie-in to the title) But seriously, am I wimping out? Should I demand that the doctor take out the check next to developmental delay? Or take matters into my own hands and white it out myself? I already wrote in "hands" on the sheet so the teachers will know what the developmental delay references.

At this point, I feel like the teachers will see everything for themselves. They will be in the presence of this extraordinary child (my god, I am one of those parents) and learn the boy who is Brody. I could put my foot down, I suppose, but really what would it gain me? Alienation of a doc I really love, who is (technically even-though-only-a-little) correct, and for what? Brody will dazzle regardless.

And update on the layoff at J's work: we received information that, while I can't divulge, made me sleep a lot better last night. But we're still preparing, in order not to jinx.

Ok, off to work.

Monday, March 9, 2009


B is starting a new daycare Monday, the 16th.

In order to do so, we had to have our pediatrician fill out the general health appraisal form.

The doc just faxed it to me and I feel like crying.

Physical exam: __ Normal _x_Abnormal
Specify any physical abnormalities: Vater Syndrome

Significant health concerns: Developmental delays

I hate the word abnormal.

But I suppose technically, that's the case, right? I just fucking hate hate hate hate that word.

And developmental delays? Where? What? How? No one has EVER mentioned this to me. The pediatrician said last time we were there that Brody didn't need speech therapy, and that he might need ot/pt once his thumbs are in place. Does that equal developmentally delayed? I just don't get it.

I don't want my baby to be labeled.

Not abnormal physical presentation with developmental delays. The former I acknowledge grudgingly as probably medically accurate. The second one I completely disagree with him.

It's just a stupid little state form that he has to fill out. I'm sure he didn't mean anything by it.

I'm calling them back and asking them to make another form, or asking for an explanation.

I have to wait an hour because (1) the office is closed for the lunch hour and (2) I couldn't do it right now without crying.

I'm thinking we are going to have to write a letter like this for next Monday. What do you think? Too much?

Edited to add: I just called B's erstwhile day care teacher, and asked her to be honest with me. I told her the situation, and she was adamant that B is not delayed in any way. She said he talks better than most of the kids in his class, pick things up better than most of the kids, his vocabulary is outstanding, he uses utensils better than most of the kids in his class, knows his colors and numbers. . . I made it through the voicemail left at the ped's office, but did start to cry with B's teacher.

So now I wait to hear from the pediatrician.

And I've started to write a letter like the one above, so if anyone thinks it's a bad idea, you'd better tell me immediately.

Spoke too soon....

J's work had another lay off Friday. Unexpected.

Sort of dampened the mood on Friday evening, although we did have a very fun night with Stacy and her family.

Here's the thing. A few weeks ago, J's boss told him and two others that another round of layoffs was coming, but that they were safe.

One of the men laid off Friday was one of the three who were supposed to be "safe." The boss said now, no one is safe, including him. Corporate demanded a layoff. And the company is in "survival mode."

So much for financial security.

J actually has a much more rational and mature attitude about it than I do. He was telling me to not freak out, not lose sleep, it will be okay, etc.

Of course, that's just what I did: freak out and lose sleep.

When I grow up, I want to be able to handle bad news with grace and a positive outlook.

Friday, March 6, 2009

To all the things I've loved today. . . .

Eight things I love about today:

1. Riding on the bus with Brody this morning en route to my office and watching him grin ear to ear, so happy is he to be on a bus, ("mommy work bus! mommy work bus!" at the top of his lungs, like I'm a migrant worker), charming the other passengers, and being mesmerized as he looked out the window at the buildings of downtown and buses and trucks and cars.

2. While Brody and I are walking from the bus stop to my office, he looks at a random stranger, who may or may not have been homeless, and says, "Hi!" And the man says "hi" back.

3. After bringing Brody into my big boss's office, she asks: How long do we have Brody today?
Me: Uhh. . . until 9:30? (hell, I think, she's going to be mad I brought him in for that long)
Big boss: (checking the clock) We only have him for 22 minutes?

Then watching as my co-workers flock to see Brody, hug him, kiss him, and give him presents and color with him on the floor (and this is a law office?)

4. Speaking of my job, today I was accused of some pretty bad things at my job by a very important and powerful third party, rendering me literally trembling because it was public, and not true, and then going to my supervisors to explain, and they unfailingly, without question, without a doubt, believe in me, commiserate with me, and build me up again.

5. Having my friend Stacy take my boy to the zoo, and to her house, for an all day play date with her daughter. And then hearing that, when Stacy asked Brody what his favorite animal was, he answered, "Choo choo train."

6. Still feeling happy that I actually created a realistic household budget for us, and realizing that even while paying back all of the medical bills (outstanding around six figures), we will still have enough money for the essentials (assuming there are no layoffs in our future and my husband stops eating lunch out every day).

7. Marveling at the writing ability of my friend, C, in her blog and feeling so grateful I know someone who can express herself so beautifully.

8. Going out for Thai and Vietnamese dinner (my favorite) tonight with my husband on an actual date at Indochine (while Brody is still at Stacy's house).

Thursday, March 5, 2009

Red Letter Days

After Brody's kidney and reflux repair success, my sister Donna wrote on Brody's carepage that she had just the way for me to celebrate. A package was en route.

There is not much in life I love more than a present in the mail.

There was a letter and a package en route, she said, and I couldn't open either until both were there.

Finally they both arrived. I opened the letter as instructed, and this is what I read:

Dear Christine,

Last fall, while shopping with a friend at Macy's in their houseware department, I happened upon an idea which I really loved. My friend was looking at the Fiesta dinnerware and the salesperson told us that a customer had just purchased 5 red place settings as gifts. She said that this person told her that she enclosed a note with each place setting instructing the new owner to save them for special "Red Letter" days. A birthday, a good day at work, a day when something special happened to someone in your family, etc.

I loved the idea and gave Barbara a set for her birthday. She loved the idea and gave me a set for Christmas, as well as all her children and a couple of her friends.

The only difference was that I told Barbara, as I am telling you, to use these special "Red Letter" day dishes on happy, good days, but also on days when you are down...when someone isn't feeling well, working is going badly, the weather is crummy, someone pisses you off, etc.

And whenever you use these dishes, always think of me and how much I love you and what an extraordinary person you are.

Enjoy them!!! I love you!

Then I opened the box, and saw this:

One of the most meaningful presents I have ever received.