Friday, May 29, 2009

Kiss my.....

Setting: yesterday evening, as Brody and I are walking to my car after school. I have pulled out my back and cannot lift anything.

Me: Ok, buddy, you're going to have to help mommy and get into the carseat yourself.

Brody: I help mommy? Why? (helping him climb up into the car seat)

Me: Mommy has an owie in my back, and it hurts.

Brody: You got an owie? On yer back? (buckling him into the car seat)

Me: Yeah, buddy. I'll be okay though.

Brody: I wanna kiss it. Make it better.

Me: Thank you, Brody. You are very nice. You can kiss it when we get home.

Brody: I gotta owie too.

Me: You do? Where?

Brody: On my butt.

Me: On your butt?

Brody: Yeah. Kiss it, mommy.

Thursday, May 28, 2009

He said, "It's perfect!"

Brody had the cast removed, which means we got our first real look at the new thumb. He wears a splint for a month full time, but we get to remove it when he takes baths, or goes swimming.

I've posted this picture on Facebook, his carepages, and now here. I can't get enough of it. His thumb is magnificent. Stunning. Captivating. I can say these things because I didn't have anything to do with it and so it's not (really) bragging.

It's all Dr. Doug Hutchinson at Shriners, and of course, the wondrous Brody.

Brody has thumbed his nose at being conventional and, instead, has thumbed his way to greatness.
Too much? I know. I couldn't help it.
Oh, and the title of the post today is because that is exactly what Brody said, with a grin splitting his face open, when we were looking at his new thumb.

Wednesday, May 27, 2009

I'm getting worse

I think I might be a vampire.

Because I woke up at 1:11am this morning, thinking it must be 4am, and therefore, time to wake up.

Shriners books our flights, you see. The flight they booked today left the airport at 7am.

Which means we had to get up at 4:30am.

I tried to back to sleep, but I was haunted by images of Kate Gosselin's bizarre hair and then the intermittent shifting of the dog paws on wood floors, or Brody coughing. I was about to doze off for good around 3am, but then Brody cried "Mommy, there's a bad guy in my room!"

No, not much sleep after 1:11am.

Jeremy and Brody did get on the flight, however. Barely.

If I had more energy, I would describe the nonstopchatter from the backseat en route to the airport. I wonder sometimes if one of my other personalities laces Brody's victuals with caffeine. I just can't believe that anyone has that much joie de vivre at 5am.

Tuesday, May 26, 2009

Nothing in particular

I woke up at 3:30 in the morning, in the middle of a 3-day weekend for goodness sake, thinking.

Just.thinking. I bought some melatonin the next day.

The next night I had a dream a plaintiff (I'm a defense lawyer) was stalking me. Not any particular one, just generally speaking. It was a mean plaintiff and she stole my hard drive.

During the days, however, life is good. J and I took Brody on a steam engine train ride this weekend. It was lovely, because of how wide Brody smiled and how overwhelmed he was. I've lived in Colorado for 12 years and had never done this train trip. And wouldn't have without Brody. I have pictures.

In the sodden mess that was weather this weekend, we avoided the grill and instead introduced Brody to smores last night. It took one bite before he was persuaded, and then he had two smores himself.

I completely rearranged and resorted my office at work. Furniture moved. Probably 500 pages of paper recycled, from cases that were closed or research I no longer needed. It felt good. Really good. I have received many compliments. Usually, you cannot see my desk for all of the paper. Now you can.

Tomorrow Jeremy and Brody fly to Salt Lake to have the cast removed and a splint made for B's left hand. I cannot wait to get the cast off, even if he has to wear a splint for a few weeks. Also, I hate it hate it hate it when Brody flies without me. I have it in my head, and I know it's irrational, that if I'm with him, even if the plane crashes, I can save him. Control issues? Me?

My mom and stepdad are coming for the 4th of July. I am so happy. I miss her, and want Brody to be closer to her. I have felt very guilty because we were supposed to go to them in May, and then June, but couldn't because of money and, mostly, work.

I find out in June if I will be taking (unpaid) furlough days in the new fiscal year, as the powers that be have decreed.

I have stopped working out. I am starting again tomorrow.

I want another smore. And a margarita. Or just tequila.

Friday, May 22, 2009

We all progressing

Brody fell again at school. Rather, he was pushed.

I got the call after a very long day at work yesterday. He was pushed by another child climbing a ladder (there's a slide in his room). He fell on his mouth. He was bleeding.

I went to him immediately.

He's fine. Sure, one of this eye teeth is jammed a wee bit up into his gum, and loose, but it had stopped bleeding, and he had stopped crying. Screw it. I hate the ER, especially on a nice Thursday evening. If it falls out, it falls out.

(See how much I've progressed in just a few weeks?)

One thing we have discovered is that daycares and schools never tell parents who the other kid is in the altercation, whether your child is the perpetrator or the victim. Probably to avoid warring parents. In the verbal description, in the written report I have to sign, there is never any mention of the other child's name.

However, as I discovered last night, Brody does not adhere to such notions.

As I carried him to the car, I said, "Who pushed you, sweetie?"

"Noah push me. I fell down."

"That wasn't nice of Noah. Did he get a time out?"

"Yeah, he hadda take five minutes." [Take five minutes at B's school means time out for five minutes to calm yourself down.]

"Did you have to take five minutes?"

Looking at me horrified Brody said, "No, Noah push me. I fell down."

Hugging him for the 5th time in 5 minutes, "Are you okay, baby?"

"Yeah, I good. I wanna cuddle on da couch, watch Nemo."

So we did.

But more importantly, he is now a source of gossip from daycare.

I heart him.

Thursday, May 21, 2009

Brodyism: he's catching on

When J and/or I do not want to watch something on TV, like the 3425th showing of Nemo or the Mickey Mouse Club, we have said to Brody, "Sorry, Brody, [insert name of movie or cartoon] is sleeping/broken."

It worked for a while. It did. We didn't have drama or more tears or tantrums. He accepted that the movie was broken or that Mickey Mouse was sleeping.

It was a short-lived utopian household we had back then, where parents could take the easy way out of parenting with a simple white lie and watch the news with impunity.

A morning or two ago, Brody woke me up for the day. As we were changing the diaper and going downstairs, I told him that I needed to watch the news so I could see the weather.

Brody disagreed. "Noooooooooooo!!!!!!!!!!!!!!!!," he whined, "News sleeping!!!!!!!!!!!!!!!!!!!!!"

Monday, May 18, 2009

Reminiscing by the numbers

I am not by nature a pack rat, except for email. Before I blogged, I would write long and winding emails to people.

I have had the same email for personal use since 2004. The beginning of my miscarriage history.
I currently still have 6,495 email messages in my inbox. Read, of course. Not including spam or order confirmations.

Of the 6,495, there are 1,611 that mention the name Brody. I think there are actually more messages about him, since a lot of the time I refer to him as B in an email.

One of the first messages mentioning Brody is me telling one of my friends about how J and I like the name Brody. I wrote that email about 3 months before he was born, before we knew he was a boy, before we had ever heard the words Vacterl, craniosynostosis, or bilateral radial club hands.

I found one email that I wrote about one week after he was born before we knew everything that was wrong, and everything that would be right, with Brody. I wrote it to a coworker who is a good friend, and apparently I needed a blog even then. Especially then. Suffice it to say, I already had undiagnosed post partum depression. Brody had had two surgeries so far, and we were waiting for the results of the Fanconi's anemia testing. Brody was in the NICU, and I was largely incoherent. But what I like about the email, if I do say so myself, is that it is an exact record of my life on September 7, 2006. It's exactly how I felt, and I had no idea of the great joy that was awaiting me with Brody.

I wish I could go back to me then and reassure myself that it's going to be okay, that Brody was going to be okay.

It takes me back to read this email, for good and for bad, seeing the dark days I've come out of, and it gives me a kick to see how far we have all come. So, for posterity and, let me be honest, my own self-indulgence, I am reproducing my email here:

Hey xxxx,
I'm not avoiding you, really I'm not. It's just every time I talk to someone I start to cry even if they are just saying something mildly nice, let alone if they say something very very nice, as most people do (like your email). We really appreciate all the love you're sending us - we feel very supported and I'm so grateful.

Today was a bad day. They did the dye test to see if his esophagus was healed, and it is but in the middle of that test they noticed he had a hole in his stomach from the GI tube. So they did emergency surgery, since bacteria was leaking into his stomach (I think) from his bowel. I got to see him afterward, and they even let me kiss him, which I haven't done since Saturday. But it was surgery, and he's back on the vent again, and he's at enormous risk for infection; they have him on triple dose antibiotics and it kind of sounds like they're expecting an infection. So this will be a very long weekend as we sit there again.

I've never had such a feeling of complete helplessness. And I look at him and he's so beautiful and so innocent and he didn't deserve any of this and I wonder why this happened and is happening and when we are going to get some good news. I felt like I was a pretty strong person before last Friday, like I could cope with a lot; but this week and the continual stream of bad news and more problems and more specialists that we are inundated with - I don't feel strong at all and I don't understand why this is happening. The doctors say it's just bad luck, but come on - really? Bad luck? How much bad luck can there be? I feel very weak and I feel so bad for Jeremy - this is his sonand he's got to deal with all of this. There's all this grieving we're doing for the baby we thought we'd have and this tremendous, overwhelming love for the baby we did have along with liberal doses of sheer terror for his immediate future and the life he has to lead. I feel like I'm a logical person and if someone could tell me why - as in, what is the point of making some poor beautiful baby go through all this - then I could cope better. Maybe I wouldn't. I just wish we could skip over all this bad stuff and get to the part where I get to learn what his laugh sounds like and what his face looks like when he smiles.

It's like after my dad died.... But the day after he died, I was shocked to my toes that Good Morning America was on TV. I couldn't believe that the world had gone on, even though he had died. And even though my sweet little boy didn't die, which is probably a miracle in itself, I look at everything, and it's the same, but completely different. Even my neighborhood and my dogs and Jeremy and family and friends - things I've had my whole life - everything has changed. And all the fun and funny things that used to be in vibrant vivid color are now in black and white - except for Brody.

Christ - aren't you glad you aren't on the phone with me now? Thanks for letting me get all this out. It's hard finding a good outlet - I get so scared when Jeremy talks like this and so I don't want to burden him with all of it. He already sees me crying most of the day while he is strong and talking with doctors and coordinating all this care.

As for coming to visit, you don't have to ask - just come. I warn you that it's pretty depressing and distressing if you haven't guessed, and you are by no means obligated to come. When I see people I haven't seen I just sort of start to cry. The rest of the time we just sort of take turns going in to see him, and then hanging out in the waiting room with people telling me to eat more and staring at me to see when I'll next start to cry right out of the blue.

[our supervisor] totally made me cry very hard today. [Coworker] told me she had already talked to the benefits person about the extended leave, and that it would be covered whenever I did the memo asking for it. I was trying to tell my mom and sister about it, but all I could get out without sobbing was "My supervisor, my supervisor" and they thought something bad had happened. It was kind of humorous, in a gallows humor sort of way.

I've taken up enough of your billing day. I just wanted to thank you for all your love and support - it means more than you will ever know.

Thursday, May 14, 2009

Developmental assessment

Copied from our carepages (link at right) from today:

I'm writing to update you with the considered professional opinions of the team of people Brody and I met with this morning. Because of his diagnosis, Vacterl association, we were put in touch with the Jefferson County school district "Child Find" which basically helps kids who might need it. But first, we needed to figure out what help Brody needed.

Brody and I went to the Child Find office, in a local school, and Brody played for two hours while the professionals watched him. There was a speech pathologist, an occupational therapist, a cognitive specialist and a developmental specialist. They each had master's degrees and lots of other intitials after their names.

Brody had a great time. They watched him play and then each professional took turns "playing" with him, basically seeing where he is developmentally. I was, admittedly, nervous. I know it's a supportive atmosphere, and these are good people. But it's also judging my child. Which is why, when he asked me if I wanted a lemon (and it was an orange), I asked him, "What do lemons make?" and mouthed "lemonade," quietly. Brody then asked me, at full volume, "Why you so quiet, mommy?" He totally busted me. However, in doing that, the speech pathologist exclaimed that he was extraordinary so it was not so bad.

The reviews are in. I'll start with the area we need to work on, which is no surprise:

Fine motor skills: Officially delayed. This is not unexpected, although it's still hard to hear. He has trouble with self-care (dressing and undressing), scissors, writing, removing caps, buttons, snaps, zippers. However, he qualifies for free occupational therapy at his school and at our house. He also qualifies to have his pre-school paid for through the county. More on that in a bit.

Cognitive. I will quote the comments on the forms: great attention span, great problem solving; demonstrates memory and early readiness skills for identifying colors, matching and counting. No concerns.

Emotional/social: Persistent and independent. Enjoys doing things for himself. Very persistent when given challenging fine motor tasks! No concerns in this area.

Communication: Great conversationalist! Very persistent and varied communication; learns new words easily; beautiful exchange with book; no concerns with speech or language.

The speech pathologist said she actually ran out of descriptive words to tell me how wonderful he is in this area. She said she could listen to him all day. And since it was an open room, other speech pathologists stopped by because they could hear Brody talking (non stop, naturally) and everyone marvelled at him. She said he notices everything, and estimated Brody's vocabulary between 300 to 400 words, which I guess is pretty good. Every box was checked on the form called "early syntactic-semantic complexity."

Now for the preschool. Brody's daycare is, actually, a preschool. It's just not a Jefferson County-run preschool, which means the kids there will not feed into Brody's future elementary school, Patterson. However, he can go to preschool for free at Patterson Preschool. But Patterson preschool is not a full day program, meaning it ends in the middle of the day. Because we both work, Brody would need to somehow travel 5 miles to his current daycare. Which is difficult since Jeremy and I both work about 30 minutes away. But I think we're going to figure something out, because the therapists and professionals today all agreed that it was very important that Brody start at a preschool which feeds into the eventual elementary school.

Why is it so important for Brody to go to a feeder preschool? Because the best way to reduce teasing and bullying of a differently limbed child when they start school is to have friendships already in place with their classmates. Then when he starts kindergarten, everyone already knows him and his hands aren't a big deal. This is a huge concern for Jeremy and I, and while it's not pleasant to think about, it is realistic. Brody's arms and hands looks different and he will face this at some point. The therapists agreed.

As a result, we will probably be making an extra 90 minute commute a few times a week when preschool starts in the fall to transport him from preschool to daycare. Not the worst thing in the world. And no, there is no transportation available.

As for his thumbs: still pink. Jeremy and Brody fly to Salt Lake May 27 for the cast removal and splinting of his thumb. He'll wear the splint for a month (until late June) and then he can only wear it at night. It's so odd but he completely accepts the presence of the cast on his arm. Doesn't fuss with it, try to take it off, ask why it's there. He just accepts and adapts.

Oh, and he is adapting not by using his right hand more. He just uses the fingers on the left hand. Even with the cast, he holds his spoon, fork, toothbrush and markers all in his left hand, with the thumb immobilized. I noticed today that he is actually using his left (now) index (former middle)finger as a thumb and developing a pincher grasp between that finger and his ring finger. It's fascinating to watch and he does it all by himself.

Oh, and I also did a calculation of how tall Brody would be when he was 18, based on his currrent height and weight and Jeremy's height and my height. The answer: six feet. Wouldn't that be crazy? A six foot tall Brody.

Monday, May 11, 2009

Mother's day

In a testament to how well my husband knows me, for Mother's day, he gave me sunflowers, chocolate and a gossip magazine. And then he made me breakfast in bed, alone, so I could watch a silly movie and read the gossip.

This was important because I accidentally drank a bottle of pinot grigio by myself the night before. I made pasta primavera for my husband's brother and his family, who flew in for the weekend, and my mother-in-law. The recipe called for pinot grigio. I opened the new bottle, added the cup or so, and the next thing I knew, dinner was over, the bottle was empty, and someone was asking me, maybe my brother in law?: Chris, did you drink that whole bottle? Apparently the rest of them were drinking beer and pinot noir.

I will tell you this about drinking that bottle: it was every bit as good as I thought it could be.

Brody, however, gave me the best gift of all the next day.

We tell Brody that we love him daily, at least twice a day. He rarely says it back. He'll say "I yuv you" if I ask him to do so. Or when I ask him, "Do you love mommy?" sometimes he says "yeah" and then gives me a hug. Sometimes, though, he teases me, and smiling, says "no!" until I tickle the truth out of him.

Then there was Friday night, when, in the middle of a group of strangers at a restaurant, Brody said in his loud little voice, "I yike yer boobies, mommy," while patting them.

Brody has said "I love you" to me once: spontaneously, voluntarily, of his own accord.

Then there was Mother's Day 2009.

Sunday night, in my mother -in-law's living room. There is a cacophony of family around us, and so many people in the living room that I am sitting on the floor next to Brody. There are 3 conversations going on at once, and even one person trying to read a book (?) in the middle of it. We had eaten dinner and it was getting close to when we had to leave to get B home to bed. B was alternating wrestling with his uncle and cousin, and playing with his pink motorcycle on the coffee table.

There was a little lull and it became slightly less loud. Out of the blue, Brody looked up from his motorcycle, turned to me and said, "I . . . . I love you so much, mommy." And then while I sat there with tears forming he continued, "Gimme a hug," and leaned into me with no fear I would not be there.

He said it twice more.

I hate crying in front of other people.

But I did.

Tuesday, May 5, 2009

Mothers Day interview

I just saw this, and adapted one question from the original. I sent it to my own mom, but I like the idea of it so much, I'm blogging it. It seems I am surrounded by friends who have lost their mothers, and the subject of Mothers Day is heartbreaking for them. So I am going to cherish my own mother's presence even more.

Here are the 10 questions to ask your mom:

1. What's the one thing you would have done differently as a mom?

2. Why did you choose to be with my father?

3. In what ways do you think I'm like you?

4. Is there anything you have always wanted to tell me but never have?

5. What is your favorite memory of my childhood?

6. Do you think it's easier or harder to be a mother now than when you were raising our family?

7. Is there anything you regret not having asked your parents?

8. What's the best thing I can do for you right now?

9. Is there anything that you wish had been different between us -- or that you would still like to change?

10. When did you realize you were no longer a child?

Friday, May 1, 2009

Shriners Diary

These are the things that I remember about the latest Shriners trip.....

~~While eating french fries just after arriving at the hospital, he looked up, and said, "I save you, mommy." I thanked him.

~~There is a play area in the back of the hospital that has swings that look like chairs. I can fit in them and Brody sat on my lap. We swung every day we were there, for at least 20 minutes at a time. The play area overlooks a meadow and mountains and there are hiking trails. It's really beautiful and, as with all mountainous areas, very spiritual.

While on the swing we would sing, (ABCs, Old McDonald Had a Farm), count, or watch the cars and bikes go by up the hill. Or we would be quiet, and listen to the silence that happens halfway up a mountain.

It is on the swing that the day before surgery Brody said to me, a propos of nothing or everything, "We all peoples, mommy. We all peoples."

~~And it is on the swing that, a day later on the morning of his surgery, while holding him with both arms wrapped around him as he laid his head on my shoulder, that I invoked the ancestors.

It's really the only way to describe it. I called them out. I demanded that every relative we ever shared blood with, back until the beginning of time, keep Brody safe.

It started with a prayer to God and the universe to keep Brody safe and make the surgery a success. And then I asked my dad, my brother, and my grandparents, all of whom have passed, to watch over him.

And then I started the invoking. I went back further, to people I don't know but to whom I must be related because, if you think about it, my relatives must have been around hundreds and hundreds of years ago...and I demanded that they pay attention and keep him safe and keep his finger pink. I thought of the nuns and farmers and soldiers and the mothers and fathers, all over Europe and beyond, and I begged and pleaded, quietly so as not to scare Brody.

And do you know that during this 10 minute period of time, Brody - the chattering, loud, silly, curious toddler - said not one word. He heard me, and he was silent.

~~I met with the anesthesiologist the evening before surgery. She asked the usual questions and then said something like, "Anything else?" And I said, "Well, he desats a lot after surgeries." She said, "I saw that in the prior cases we've done on him." I said, "If you just have him wear the nasal canula, he won't desat at all. Then wean him off by the morning after and the pulse ox is still on." What struck me about this was that I was speaking anesthesia.

~~I lied to Brody. The morning of surgery, because he hadn't eaten for 15 hours, he became desperate for milk. He wanted lunch and fries, but his go-to food to ask for was milk. I got so heartsick at denying him food, finally, when he really started sobbing and crying, I told him that yes, he could have milk. But that the milk was all gone, and the nurses were out chasing the cows to get more milk. This made the nurses within hearing laugh, but it quieted Brody.

When he woke up after surgery, almost 9 hours later, the first thing he asked about was whether his cast was yellow. The second thing he asked was, and I quote, "Where da cows? Nurses get da milk?"

~~We shared a room with another boy, Brody's age, who was born without a tibia in his lower leg. When we arrived, he had just had his left leg amputated below the knee. Mostly they kept his leg covered in the blankets, but as the day wore on, he glimpsed his leg. And started screaming and crying, "Where's my leg?!?!?" It was, not surprisingly, as awful and as heartbreaking as it sounds.

In addition to shedding a few tears myself, it was at that moment that I realized what everyone means when they tell us that Brody will be okay because he doesn't know any differently.

~~After the surgery, but before Brody was back in the room, our surgeon sauntered in. I do not use the term "saunter" lightly. He's a good and nice man, but he sauntered. He looked like he had showered, and he was carrying chocolate chip cookies, and eating them. It struck me as arrogant - I would never go into a meeting with a client eating cookies. On the other hand, he was relaxed and jovial. After moving my son's index finger into thumb position.

I learned then that when your child's perfectionist surgeon is relaxed and jovial after surgery, that means the surgery went well.

~~Brody was asked to give hugs and/or kisses to three nurses, in greeting and farewell, two female cook/cashiers, and Francisco, the lone male in the bastion of the cafeteria. Francisco is a 30ish Mexican guy who tries to get everyone to speak Spanish and knows us from every single trip to the hospital. He is, however, a little reluctant to get Brody hugs and kisses. Until the Saturday we left. Francisco was out from behind the grill, and Brody was fascinated by him (I think because he gave him waffles and pancakes) He kept going up to Francisco and talking to him. Finally, Francisco couldn't resist and, while on bended knee with outstretched arms said, "Okay buddy, give me a hug." Brody did, and a kiss.

~~The day after surgery in the morning, we went to see the Child Life person, Carolyn, to look for some cars. Carolyn opened the closet and Brody's eyes got wide when he saw the vaccuum. He proceeded to play with that vaccuum for every single moment: the bathroom in our room, the parent shower on the other end of the floor, while I was in the shower, to the cafeteria, to the play area, to the elevators and back. The nurses and parents kept saying things to him like, "Are you vaccuuming? You should come to my house!" He got confused. He thought he was really going somewhere. I bought him a vaccuum off Craigslist when we got home.

~~Brody shared. My sister in law sent us a bouquet of balloons. Since we couldn't take them on the plane, and they were still floating high, we gave a balloon to the kids who had to stay the weekend. I thought Brody might become enraged at sharing, as usual, but I explained that we couldn't take the balloons on the airplane, and that we should give them to the other kids. So we did. And he went with me, room to room, until they were gone. I think he had more fun than me.

~~At the airport on the way home, I handed the TSA person our boarding passes and my driver's license. Out of the corner of my eye I notice Brody has sat down on the ground. "What are you...." I realize what he's doing. Removing his shoes to go through security. Without any prompting from anyone.

~~This week he has been in school, and when I pick him up, we talk about school and if his day was good. Then he asks me, "How yer day?" One day this week he also asked me, after how was my day, "How yer thumb, mommy?" I guess we ask him about his thumb a lot lately. But it's also evidence of his truly sweet nature. I told him my thumb was good.