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.

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.

What.Do.We.DO???

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.

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.

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.

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.

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.

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.