Thursday, February 26, 2009

Moments of memory

The other night I picked up Brody from school a bit earlier than usual, and it was still light outside. This was quite unusual for Brody, and he was telling me how "night time coming," and asking "where moon?" etc.

We were in the car driving, and I was explaining to him that when the sun sets, the moon rises, and then it's nighttime. I was having a distinct Profound Parenting moment, and really felt that this was A Moment in Brody's life: how he learned about sunsets and moon rises.

Until he asked me from the back seat, "What you talkin' 'bout, mommy?"

Obviously, I was alone in my Profundity (yeah, I had to look it up).

It got me thinking at what stage and what age a child remembers. And what my favorite childhood memories are, and what Brody's will be.

My favorite memories of my parents are jumping into my mom's arms on the stairwell landing in the house on Hawthorne. I'd stand on the top step, she'd be about 3-4 steps below on the landing. I'd fling myself at her, and she'd catch me. I think I was about 2.

With my dad, my favorite memory are falling asleep on top of him after I cut my arm open climbing the chicken wire fence in our backyard and had stitches (no, we didn't have chickens and I'm not sure why we had chicken wire). I think I was about 4 or 5? (Mom? Sisters? Anyone know when Eric graduated high school?)

Another memory of my dad is when I broke my leg in first grade (yes, I was a bit accident prone. In my defense, Chris Osborn dared me to jump off the slide at Mason. I, being a clever lass, told him he had to go first. He did and landed in a giant mud puddle. I knew I'd catch hell for being muddified, so when I jumped, I jumped past the mud puddle, and therefore, farther than he did. Hence, fractured leg. But I didn't get muddy). Anyway, I actually remember this episode quite a bit because of dealing with Brody and his challenges using his hands and arms.

My elementary school was two floors, with no elevators. When I had the thigh high plaster cast, I refused to use my crutches. I was scared. As a result, my dad carried me up and down the stairs at Mason and at home, for I don't know how long.

One night, at home, I was in our living room. I had to go to the bathroom. Really bad. I asked my dad to take me.

I was, naturally, outraged. I had to pee!! Bad! He told me to use my crutches if I had to go so badly.

Fuming about his betrayal, I did it. Slowly, but surely, I walked myself to the bathroom. And I was so proud of 8 year old myself.

But it wasn't a favorite moment of mine until I had Brody. Now that I'm a parent of a child with no radius bones and 8 fingers, I think a lot about that moment, when my father made me, literally, walk on my own two feet and how hard that must have been for him.

And that example has guided me at times when I have made Brody, literally, use his own two hands to accomplish a task, even when all I wanted was to just do it for him.

(I just cannot write a short post, can I?)

So my question is, what are the moments of your childhood that you remember or think about most? If you have had children, have your favorite memories changed?

Wednesday, February 25, 2009

A new thumb

J and B flew to Salt Lake Shriners today for a clinic appointment.

J emailed me the following pics.

This is Brody and the Mike and Sully in the hospital.

This is Brody and Mike.

This is Brody's new thumb.

Doesn't it look really thumby? I love it. Plus it's like B is doing a hand model pose.

Brody still can't move it, and the surgeon said that was not unusual, it's probably still painful to even try. J also noted that the fingers are still very curved, but as I told him, they were to begin with, and the surgery wasn't supposed to fix the curving, so that's not surprising.
Now we have to decide when to do the left hand thumb: our choices are apparently late March or late April. I'm completely unfamiliar with having a choice of surgery dates and we are actually completely undecided. I guess we'll decide in the next week or so.
Viva la thumb!

Monday, February 23, 2009

The announcement

You all know Dante. I knew Dante only because I knew his mom, not very well, through a message board on IVillage for moms of babies born in September 2006. When he was diagnosed with cancer in December 2007, one of the other moms formed a Yahoo group for people on the board who wanted to help Dante and his family.

That group, we called ourselves Dante’s Village Troops, aka, the DVTs.

Because of the generosity of those 15-20 women, we were able to send packages every other week. The packages were everything from Visa gift cards, gas cards, a mother’s bracelet for Dante’s mom, presents for Dante’s siblings and both parents, books, a spa gift card, a grocery gift card.

Pretty spectacular for a group of women who didn’t know each other in real life. And something of which I am very proud.

When Brody had his first surgery at Shriners in Salt Lake, the DVTs even sent us a care package at the hospital, with a $50 food credit in the cafeteria, a stuffed animal, and a book for Brody.

It’s not often that people stun me. I was stunned. And I think it was that moment that I had the beginning of my idea.

Throughout this journey with my miscarriages and Brody, I have struggled to understand, to put it in context. Why me, why us? I thought in a haze of self-pity. Then, as I got to know other kids, I wondered “why us” in a different haze. As in, what am I supposed to be doing with this perspective?

I feel like I am in a unique position. I have glimpsed the terror of having a child with serious medical issues, but we’ve escaped the ultimate loss. We have lived in the hospital, and Ronald McDonald House, and we’ve had to leave our baby in the hospital and go home at the end of the day. I’ve watched them wheel my boy into surgery 11 times. I know what it is to run out of paid leave at work, to wonder which bill to pay that month, to feel isolated in the hospital while the rest of the world goes by, and sit by my child’s bed, watching him desat, listening to him cry in pain, hoping and praying.

To what end?

And why am I being shown all these sick children, and being drawn into their lives through Caring Bridge and Carepages.

All the while, the DVTs are sending packages to Dante and his family. And then Dante passed away, and I missed the flurry of yahoo group posts from my DVTs.

After the first of the year, I was talking to a friend about New Year’s resolutions, and how I didn’t have any. She chided me that I should have some, and asked what me what I really wanted to do?

I said, “I think I might want to start a nonprofit.”

That was really the first concrete inkling. It got me thinking about what a gift we have in Brody, and how unique we are, in that he has a lot of challenges, but not severe challenges relatively speaking. Then I was thinking,what the hell could I offer? I can’t cure childhood illness, and really, is my $50 to fund some research really going to help a family who is lost, alone, and stressed to the point of insomnia and tears?

The next morning, as I was driving to work, I passed by the Church, not mine, that I always pass. The church has, of course, a sign out front. It never said anything really compelling. But that day? It was a new sign. You know what it said?

“What will you do with God’s gift?”

No one ever said the Universe was subtle.

I thought about it. What will I do? What do I have that can help? Then it came to me. I’m a lawyer. I can figure out how to start a nonprofit.

And so I am.

I want to create an organization that helps families of chronically sick children. The families of kids like Dante, Eithene, Elias, Benji, Maggie. . . not just kids with Vacterl, but any child who is chronically ill, whose parents (and siblings) feel like they live at the hospital more than they live at home.

Make no mistake. This is in the infancy stage. I don’t even know what the nonprofit will actually do. I don’t know what the “help” will be (a great deal will depend on the funding, I imagine). I don’t know what the criteria will be, or even the name of the nonprofit.

And when I told my husband that I was seriously thinking about this, he completely flipped out because, he said, “You have a full-time job, and you always say you don’t have enough time for me and Brody, and you have trouble sleeping. Now you’re gonna add a nonprofit to run to all of that??”

Yes. I’m doing it.


We have two more surgeries on the immediate horizon for Brody (that we know about) and I need to really get a few things set financially before we even think about making this reality.

But I’m doing it. As my dear friend C says (you should read her new blog): “unless we follow our hearts, we won’t get where we are meant to be in this lifetime.”

And this is where my heart is leading, so……

As for the name, I can’t decide between something boring like the FirstName LastName Foundation, or something abstract, like ZuZu’s Petals (already taken in the Colorado corporation database). Saturday Brody was looking out the window while we were driving. I asked, “Are you looking at the sky?” He answered, “Yeah. Five skies. I see five skies.” So now I like the Five Skies Foundation or something, but that’s nonsensical.

There you have it.

Any and all suggestions welcome.

Friday, February 20, 2009

Plans and goals

Plans for the weekend:

1. Further de-clutter the house. Focus points: upstairs hallway (yeah, we managed to clutter that up. It's pretty impressive, but also annoying as shyt), garage, office.

2. Start tax document gathering. Yeah, there's a pile of tax documents in the garage (see above) that I have to sort through, most of which are unpaid or unpayable medical bills from Brody's adventures. I hate opening them, because it gives me agita. But I'm trying to be a grown up non-procrastinator, and act like an unemotional lawyer in my private life, and get our taxes done in time. Thank GOD for the medical expense tax deduction. Now if only there was a retail therapy tax deduction.

3. Our friends' joint birthday party. They both have birthdays in February, and so they are hosting a gala blowout birthday party at their house. In laws are taking B overnight (yeah, I'm a hypocrite, these are the same inlaws as my post earling in the week), and our friends bought wii karaoke. You do the math. It's gonna be grand, baby. And to further celebrate the renal success, I'm doing cranberry and vodka.


1. Answer the phone. In the last year or so, I've started to prefer all communication to electronic version: text and email. Even people I love, sometimes I screen and they go to VM. What's that about? I don't think it's healthy, so I'm going to force myself to answer the phone and maybe even (gasp!) call some folks. But one thing at a time.

2. Taxes. Ugh. So much anxiety it causes. Why is that? We always get a refund. But what if we don't this year? That is the trouble.

3. Write the blog post this weekend announcing big news in the life of me. (No, not pregnant). But it's something that's been percolating for a few weeks, or months, and I want to get it going already. The blog post will crystallize it and make me move forward. deep breath. It's good news. But a massive (I hope!) undertaking.

4. Drink more water. (I had to have at least one cliche).

Hope you all have a good weekend.

Thursday, February 19, 2009

A tale of reflux

Remember way back in November when Brody had the surgery on his kidney and bladder area to fix his Grade V reflux?

Today was the day that we went back to see if the surgery actually worked.

We had an early 8am renal ultrasound.

Brody was quite terrified of it. The only procedure he has to go through that doesn't cause pain, and he was terrified. Although, it's also the only thing he goes through for which he is awake, and not under general anesthetic, so maybe it does make sense.

Regardless, I think he scared himself to sleep during the 15 minute ultrasound.

Then we visited Dr. Furness in his offices.

Who reported to us that in fact Brody's kidney looks


The surgery worked?, I asked.

Yes, he said.

The surgery worked! The surgery worked!

No more daily antibiotics!

No more worry about breakthrough urinary tract infections that could damage the only kidney we have!

Then the doc told me that the kidney swelling had gone down, because the reflux was fixed.

Wait, what? I don't recall you telling me that his kidney was swelling, Doc. I remember you saying it was bigger than normal, because it was doing the work of two kidneys or something.

The doctor just smiled.

Frankly, this is another reason I love this particular doctor.

Because if he had told us that Brody's kidney was swelling, I don't think I would have slept.

Need to know. Careful phrasing. Bedside manner. Customer service. We love Peter Furness.

I dropped B off at school and stopped at a diner for a little breakfast. After I ordered and stopped moving and sat still, I started to shake and had the nearly uncontrollable urge to cry.

The kidney issue has always been my Achilles heel with Brody. The kidney that is now safe.

I held it together. Barely.

But I can't be in a bad mood today.

I can't stop smiling.

How does one celebrate a renal success?

A toast with cranberry juice? Champagne and cranberry juice?

Wednesday, February 18, 2009

Old wounds

Recently I had occasion to revisit the "miscarriage years," 2004-2006. A friend of mine is experiencing heartbreak in this area, and I bought her some alcohol to dull the pain.

And I started talking and reliving a bit of that time. I haven't been back there in a long time. It took me 2 1/2 years start to finish to get Brody. It seemed like an eternity. I remember the first time I figured out how long it took us to have a child, and thinking how short a time frame that was. I think that every single time I say "it took us 2 1/2 years." That can't be right, can it? Two and a half years felt like four lifetimes, at least.

And now Brody's been here 2 1/2 years, and it feels like he's been here my whole life.

Some friends of my husband sent out an email this week joyfully announcing they are expecting. And my reaction? "You naive, stupid fools."

Nice, aren't I?

I have found I have two categories of pregnant people: people I like and respect, whether I know them that well or not, and everyone else. If I like and respect you, then none of the following applies. If you are everyone else, the following does apply to you, and there is pretty much nothing you can do to change it. Because in the truest sense, this has nothing to do with you.

This is what I do, what I cannot stop myself from doing, what I am compelled to do, when I find out if someone in the second group is pregnant:

1. First, my heart sinks into my stomach. You know that feeling. You get it when you get bad news. I got it when I read about people dying and I got it when I found out a friend didn't conceive this month.

2. Then the voice inside says, "Another one." As if there are only a certain amount of healthy pregnancies allotted and allowed on this planet, and if someone else gets one, then my chances for having one decrease.

3. Calculate how far along they are to see if they are out of the 1st trimester. If they are not, I shake my head and wonder how anyone could be so naive (I was this naive once. Once.) (This does not apply to you who just announced on her blog, because you are in the first group).

4. Figure out how long they've been trying. If you have been trying for a while, say six months or more? Then you get a great big well-wish from me. If not? If you are the fertile perfect person who says "I'd like to get pregnant in January, because I already have a newborn Halloween costume picked out," and it happens for you justlikethat? Probably I will bear some resentment towards you.

(Caveat: if you have lost a pregnancy, or have had trouble conceiving, have a sick child, you are automatically exempt from every single one of my petty grievances. You are part of the sisterhood. You have street cred, as it were. You know what heartbreak is. You, I'm truly happy for you)

And I'm not even trying to get pregnant. And I already have a child. Which, to me, makes me all the more ridiculous for torturing myself.

So this is the question I've been asking myself since I saw the latest email with ultrasound pics attached: will I ever read an announcement of a pregnancy and not feel a twinge of resentment, a dollop of envy, and smidgen of heartache?

Tuesday, February 17, 2009

Deep cleansing breath

Before my rant of yesterday, I was going to write this post.

Better late than never. And, incidentally, I feel much better after that rant. Why is that? Why, when you get something out, does it feel like not that large an issue?

Back to the weekend. The plan was to put Brody into bed early, get Thai food takeout (my favorite) and watch some movies on Valentine's Day.

Husband went to rent the movies. This is usually not fruitful because invariably he returns home with some kind of zombie flick or mind numbing action movie.

This time, he came back with Vicki Cristina Barcelona. Quite a pleasant surprise. Turns out he does know what I want to watch.

Then we went to the mall. Not to shop, but to let the toddler monster run until he tired. There is also a merry-go-round at the mall. Brody rides the zebra.

Also at the mall, there is an indoor glow-in-the-dark putt-putt course. I take Brody in there to look around as part of our mall hike. We never play.

Until we played air hockey.

Air hockey is the one arcade game I love. I'm sort of blissfully in love with air hockey.

Turns out, so is my son.

There was a step-stool that we used, and then Brody and Jeremy "played," cast and all. He can fit the paddle between his now-index finger (future thumb) and now-middle finger (future index finger) on his left hand.

At right are the action shots.

The kid actually knew how to play and knew what to do.

He loved it. There is now a high likelihood of an airhockey table appearing in our basement.

At home, we exchanged valentines.

To put this in context, as you may know, my marriage was not in the best of places this past summer.

Lately, it's been pretty good. Things have shifted and changed. My husband has shifted and changed and maybe I have too.

At any rate, when he gives me cards on holidays, he always, to his credit, picks the really wordy ones with all the romance and crap. (I give him the so-called humorous cards).

But he never ever actually expresses anything about his feelings from him to me. How he really feels. He'll say "I love you, you're a great woman and mom," but that's it. I know that's actually a lot, and I've saved every single one of those cards. But still. There was nothing ever . . . . deeper from him. (Not that I expressed anything deeper to him. I'm giving him cards that rhyme with cartoon characters on them).

All of this to get to this. He did give me a card. But he also gave me a love letter.

A real love letter. I don't want to share any of it really, but, after I read it, my facial expression was not unlike Brody's after splashing about in the tub:

Monday, February 16, 2009

Friday, February 13, 2009

A little sweet for Valentine's Day

My dad died when I was 18. He was born on the 14th of February, 1922. He died on the 14th of December, 1989.

It is one of the great disappointments of my life that he never met Brody. Because I think Brody has a lot of my dad in him. His spirit, courage, heart, and certainly, his hair. (My dad had the best hair of any man I've ever known, and from my zoology class at MSU, I know that a child's hair comes from the maternal grandfather: Ed Biretta, in this case).

I frequently show Brody Grandpa Ed's picture from when my dad was a soldier in World War II. Brody always smiles and talks to the picture. I also call on my dad during Brody's surgeries to watch over him.

Two nights ago, I was explaining to Brody that Valentine's Day was Grandpa Ed's birthday. He asked me where Grandpa Ed was. I said that he died.

B: He died?

Me: Yeah, he died.

B: Where'd he go?

Me: He went to heaven.

B: Heaven?

Me: Yeah, heaven. (I'm starting to tear up now)

B: He died?

Me: Yes, but he lives in here (touching Brody's heart).

B: In my shirt?

He made the tears dry up while I laughed.

Thursday, February 12, 2009

Is it because of surgery or because he's 2? Or????

Brody never climbed out of the crib. But it became clear that he was too big for it.

About a month ago, we switched out the crib to the toddler bed. The toddler bed that is actually a race car, the kind that use the crib mattress. The bed that is in the exact same position in his room as his crib.

Then we had the latest surgery at Shriners at the end of January.

Since then, he has developed the habit of not going to bed peacably anymore and saying "mommy, stay" or "mommy, cuddle me." I mean, really, why not just pierce my heart with a knife. How can I walk away from him saying that, while crying real tears, in the middle of the night?

And I know it only prolongs it and make it worse.

Every time we get back from a hospital stay, we have issues with sleeping. Every single time. This last time in January, it was different because I didn't sleep with him in the bed, just in the room. I thought that would be better.

Of course, it was not.

Because we've thrown into the mix the toddler bed? Because he's traumatized from all of his surgeries? Is he afraid he'll fall out of the bed? Does he feel like his arms won't break his fall?

But this is what Brody has told us. He has told us to "put the race car bed away." "No like race car bed." "Scared race car bed."

Well, we can't return the crib because Jeremy disassembled it to the point of lacking utility any longer. Because who would think that a 2 year old boy wouldn't want to sleep in a race car bed???

Last night? Brody was "up" (although I doubt he was ever asleep) NINE.TIMES.

He was never up nine times while a newborn. NINE.TIMES.

Six times between 9:30 -11:30 pm. "Blankie mommy." "Ball mommy." "Leave door open, mommy." "Cuddle mommy." "Stay mommy." Crying every time. Using every excuse. "Wanna watch TV on the couch, mommy."

11:15pm. "You can't go on the couch, Brody. Your choice is the race car bed or the floor."

"I want sleep floor."

Holy christ. Really? So I put a pillow and a towel on the floor in his room. WTF is going on? Have we all lost our minds? He lasts about 15 seconds.

Finally, out of sheer exhaustion (query me this - is it really impossible for Brody to know when I have early morning court appearances? Because he seems to know exactly when they are. I can't remember the last time I didn't have dark circles in court) I bring Brody into bed with us.

There's Jeremy, on his side of the king bed, sprawled and happy. There's Brody, in the middle, sprawled and happy.

There's me. On my side. Using 5 inches of mattress. Not sleeping. Mommy maaaad.

I eventually did sleep. Right around 12:30. At 12:40, I wake up to Brody slapping his foot on his bare stomach. WTF?

"Wanna go race car bed, mommy." At least we're agreed on where he is going.

Jeremy and I praise him for his choice. Ok, so just Jeremy did. I was afraid to say anything. I wanted to sue him for emotional distress.

Put him back in bed. He's got Elmo, monkey, Cookie Monster, blankie 1, blankie 2, pillow. Door open. Light on.

He sleeps.

Until 2:30am. Wow. Almost a 100 whole minutes.

I give up. Drug him with 8 ounces of milk, and he goes to sleep.

Until 5:30am. And he's up for the day.


Is it the surgeries? Is he traumatized? Does he just want me there? Do I have to stay there even if he does? Why is he scared of the race car bed? What's an alternative? Is he afraid to fall out of the race car bed?

I'm so tired. I have no idea what to do. The teachers at daycare are clueless. I'm clueless. Jeremy is clueless. Please tell me what to do? I wanna eat sleep.

Wednesday, February 11, 2009

Some kind of wonderful

Some kind of wonderful.

That's what I said to myself when I saw this video. It's a video that was posted on the Vacterl Network parents group.

Alex, the young woman in the video, submitted the film for her fine art degree show project.

She has the same limb issue (I can't say the d word) that Brody has on her one side.

One parent who saw it called it poetry in motion. Another parent said they should show it to every parent of a child right after the child is born without thumbs. I agree with both of them.

And I'm going to encourage Brody to make a film of himself one day, maybe with the help of his cousin and my godson, Sam, already a filmmaker, so he can help parents and children dealing with this.

It really is a gorgeous film.

Monday, February 9, 2009

Short and light and . . . I forget

I've been a little serious lately. So in an effort to not be, here is today's problem:

Several months ago, I made appointments for four doctors' appointments for me and for B.

Coincidentally, each appointment was for sometime in February...

I realized last week that I never wrote them down in a calendar and have no hope of locating the reminder cards.

I've called 3 offices so far, and gotten the appointment info. Do you know how ridiculous you feel if you have to call and say "Hi, I have an appointment sometime in February. Can you tell me when it is?"

As I said, I've called 3 offices so far. My dentist, obgyn and Brody's urologist.

I can't remember the fourth. I've gone through our list of doctors and nothing is jogging my memory.

I'm hoping they call to remind me.

Friday, February 6, 2009

Thank you and . . . .

Words cannot express how unbelievably grateful I am to the commenters to my previous post. You each gave me such comfort, and when I needed it. It's even more extraordinary to get comfort from people I have not had the pleasure to meet in the flesh (I was going to say "met in real life," but that's not appropriate, since this stuff is as real life as I ever want to be). Thank you. I got a little teary eyed, and felt surrounded by wisdom and the permission to grieve. Which I so desperately needed. And more of which you will unfortunately have to read about.

And now I'm changing the subject and asking a favor. Which is probably crappy of me since you were so incredible before, but that's what you get for being incredible. Requests to take your awesomesauce-ness to other venues and do for them what you did for me. . . .

I have a request, for anyone reading to provide comfort to another family, the mother of which is a reader of this blog.

There is a boy, a few months younger than Brody, who has been diagnosed with Vacterl, and has significantly more medical issues than Brody.

I read the mother's update last night and became . . . pissed off.

Let me back up. At this point in time, the parents of this darling, and adorable almost 2-year old boy have to make some decisions about certain treatments for certain conditions. These decisions will affect the boy's quality of life and longevity. As I read the updates, there is no treatment that does not risk both.

The boy almost died a few weeks ago, because he became septic. And this is why now is the time that the parents have to make some hard, heartbreaking decisions to deal with his multiple-organ, multiple-system, chronic, life-threatening conditions.

Then we get the update. And the mother informs us that people are actually criticizing them for the choices they are making. One apparently even told them they were "playing God" and to pray for Jesus to intervene in the health of their son, instead of, you know, providing medical care for the boy. Some of the messages are equally. . . lukewarm. . . in their support of this family. Giving un-asked for advice, and questioning the family's right to make these heart-rending decisions.

Naturally, I'm almost as enraged and not nearly as hurt as the mom of the little boy. "How dare they" is a phrase that's been running through me quite a lot. Especially since, if Jeremy and I hadn't "played God" and arranged for Brody to have surgery at 48 hours old, and again at 6 days old, he wouldn't be here at all.

Look, I know it's not pleasant to read about sick kids. Some days I don't read updates from anyone because, well, it's too bloody depressing and sad and I just can't do it. And so, I'm not asking you to read all about this child, and get all involved with the details of what they're going through.

I'm asking you to just post a message in support of them. This is the link to the guestbook - it's not all involved like Brody's carepages with passwords etc. Just click on the link to the guestbook. I know the mom would appreciate all the extra prayers, or good thoughts, you could spare for them right now.

Thank you thank you thank you.

Wednesday, February 4, 2009

Is there such a thing as too much perspective?

Is there such a thing as toxic perspective?

I think sometimes I have too much perspective. Which probably sounds arrogant and insensitive. And maybe it is.

Because of Brody’s issues, I not infrequently have conversations with people that are comprised of them starting to tell me about a problem they are dealing with, and then stopping themselves because, they say, their problem is insignificant compared to Brody’s problems. I respond, sincerely, that just because we may be dealing with Brody's issues doesn’t mean that [insert their problem here] is any less troubling, draining or heartbreaking for them. And I really believe that, and have never once thought differently.

I used to think Brody’s medical issues were devastating. But in the last year, becoming acquainted with Dante, and other Vacterl kids who have had 20 or more surgeries and are younger than Brody, who seem to live in the hospital, I have gotten perspective. It really isn’t as bad as I used to think, because Brody could be so much sicker.

I think especially in the last few months I’ve shed a lot of self-pity and looked positively on what’s going on with Brody. I outlined in my head the next course of surgeries: a, then b, then c, then maybe d in the spring, etc. We can do that, I said. We can get through that, and then we can get a “rest” from surgeries. I was thinking that, with the hand surgeries in particular, it will be so nice not to worry about how to give Brody baths, or take him swimming, or let him play in the sand or water, because he won't have a cast on after the spring.

Then, when we were in the hospital last week, I had a talk with Brody’s hand surgeon. He’s brilliant and talented and I really do trust and like him, which is saying a lot because I don’t trust or like most people.

And he told me, after looking at Brody’s hands and arms during the surgery, that unless Brody wore some kind of splint for the foreseeable future, his hands were not going to remain straight, and they would continue to curve in no matter what he or we did.

Even with the surgery to straighten and centralize the wrists.

He said even the bones were curved, to the point that he couldn’t put the pin (from the arm to the hand, to centralize the wrist) in straight.

Writing it down right now, it doesn’t seem really upsetting on "paper." But the reality of it is something else. I had my very own sobbing pity party in Brody’s hospital room. No family vacation with saved up annual leave. No break from casts or splints for Brody. The poor child is so skewed that he thinks casts are fun and splints are pretty.

The surgeries not working, which is essentially what the surgeon was saying to me, was not part of the plan. Brody having more surgeries, and having to wear a cast and splint for the summer, and maybe for all his summers, was not part of the plan.

You might be laughing now. How could I actually have believed that the plan would not change? You'd think after 4 miscarriages, 2 1/2 years of trying to have a child and 2 1/2 years of dealing with Vacterl association, that I'd know better, right?

I didn't know better. I imagined that we’d have a “fix” for the hands and that the thumb surgery was the 2nd to last hand surgery and casting event for a few years at least. For the last year, and all 7 surgeries of 2008, I kept telling myself that once we did a, b and c, then his kidney reflux would go away, and then his hands would be straight. He’d have thumbs. Yes, his arms would be shorter than most, and yes, he’d have 8 fingers, not 10. But the surgeries would make his arms straight and he could play and sleep and eat and swim without casts and itching and discomfort and telling us the cast is too tight and to take it off.

And now, all my best laid plans are gone.

And it’s ridiculous because I bet Dante’s mom would trade anything for Dante to be here, in any shape with curved bones or not, in casts for the next 20 years or not. I really do understand that, and then I'm still upset by the news about Brody’s arms.

And then I get mad at myself for being upset. Because I have no right. I really have no right. My son does not have an illness that will shorten his lifespan. He has no brain damage or developmental delays. We have jobs, a home, and really the most incredible support system. What the hell right do I have to be upset about this?

And then I remembered what I’m always telling friends who censor themselves around me: just because someone else seems worse off, doesn’t mean you don’t have a right to be upset about your own issues and struggles.

But I can’t stop the constant reminding of myself that we don’t have it so bad so what in God's name am I complaining about?

And then the real worry starts in: that, when faced with my whining and lack of gratefulness, the universe will send something our way that will make everything so far look like a stroll in the park.

So that's why I wish I didn't have so much perspective.

Because (a) I think I'm losing my mind some days because I don't know what to feel; and (b) I think I need to feel a little disappointed about the setback in order to process it; but (c) I don’t feel like I’m entitled to really be upset enough about it warrant "processing"; and (d) on top of that, I'm terrified that if I do allow myself to feel whatever the hell I feel, then that will trigger some cosmic chain reaction that will bring us something even worse than anything I've ever imagined.

I'm going to pour myself a vodka tonic now.

Monday, February 2, 2009

Before and after

We are back, safe and sound, from Shriners Salt Lake. I am back at work, and Brody is doing extraordinarily well. I have much to blog about, but can't get to it just now. So in the meantime, two photos of the right hand makeover.

At right, the night before surgery. He had a little rash on his arm from the cast that was there, but that's his hand before surgery.

And this is a few hours after surgery....
I simultaneously got goosebumps and shed a few tears when I saw his hand for the first time. I knew intellectually what it would look like (I've seen after photos of other hands), but it's something else to see such a dramatic change on your own child's hand, in just a few hours (4 1/2 to be exact).
The thumb (which is still strange to write and say) is still pink, so I think we're out of the woods. The first 48 hours post-op were the most critical, and since we're now about 96 hours, we are feeling pretty confident that the circulation is here to stay.
We arrived back from SLC on Saturday afternoon. Brody is back at daycare today (he was quite excited to go) and hasn't needed any pain meds since Saturday at 5:30am.