A Separate Peace

We have started trying to take the boys to church with us on Sundays. It's a little crazy. They used to laugh maniacally and thump things. They’re a little better now but they’re still loud. And of course they want the same book at the same time, or try to sit in the same chair at the same time (we have rocking chairs in the back of the church.) It’s just chaotic.

Chiara is better for the most part, but sometimes it’s only marginally so. Today she cried (SOBBED) and begged me to go with her to the childrens' liturgy. Each week is headed by a different volunteer parent. They don't know the kids or their names. It's a mixed crowd ages 3 - 9. There are a couple of boys who are just monsters. I don't blame Chiara for not wanting to go by herself--I don't want to be there either! I couldn’t just leave her there sobbing uncontrollably but at the same time I don’t want to make a habit of literally holding her hand through a situation that’s uncomfortable, but not terrible. Besides, I wanted to hear the homily. I like this parish; I like this priest. I wanted to hear him.

I’m feeling guilty because my daughter is quietly sobbing inside the classroom. I’m feeling anxious and trying to justify leaving (it’s good to work out situations in which you are uncomfortable, right?) And I don’t know what the right thing to do is. I ended up just staying right outside the door until Chiara was comfortable enough for me to leave (which was when they started the craft). I decided that if I really wanted to hear the homily I could email Father Mark for it. I think there’s a podcast, too. I don’t need to be in such a hurry.

When I went back to the main church I saw that Father Mark wasn’t giving the homily after all. One of the parishioners was talking about how he’d come to his faith and the 26 years that he’s been sober. Interesting, yes, but I’m glad I didn’t hurry and leave Chiara before she was ready.

Then it turned out that two parish members were recently married in their home country (W Samoa) and wanted to say their vows again here at the church. So Father Mark asked all married couples to stand and renew their vows.

There we stood, Matt and I, at the back of the church—“Do you, Matt, take Janine…” amidst the boys dropping Cheerios like a trail of breadcrumbs and banging their heads and tripping on imaginary steps. I was laughing and crying at the same time.

It makes me think, this is what it must be like to take yoga in India. India is so famously crowded and loud and hot and in your face and our idea of yoga is the opposite: it’s complete silence and stillness.

I used to go to church to get a little bit of that peace and stillness and take it back with me for the week. Now that we’re bringing the boys, church is just as chaotic as the rest of our day. So I have to find peace in a different way. Like being the eye in the storm.

Today, waiting in the doorway, watching Chiara until she was so absorbed in her activities she didn’t notice me anymore, and then later, holding Matt’s hand promising to have him and hold him until death divides us, I got my brisk wind of peace. 

Bye-Bye NICU

In the last post I talked about how leaving the NICU Partnership Council would be unthinkable. Then I spent a week (at Squaw) thinking about the book I’m trying to write and what I want to say and WHAM-O I decided to forego my responsibilities with the NICU (Partnership Council and Family Advisor Council) without thinking twice (I bet there’s a cutesy “unthinkable” tie-in there).

The boys are nearly 20 months and for the first time in 20 months, they’re acting their age. It seems like a miracle, but that’s really just what supposed to happen. They’re supposed to catch up by two years. We still have some language delays. If he could, Michael would tell you that he has about 20 words. But since each word sounds like “bah” or “doo,” it’s hard to get an accurate count.

Those are just words—they communicate now, something they didn’t do a few months ago. They know how to get your attention (for example, Wagner is particularly good at conveying the message that he has been treated unfairly by his brother). And they “get it.” Michael will try to help unload the dishwasher and if the door is open, will stuff silverware into drawers. Wagner will try to blow his nose.

Aside from having to brush teeth every 2 ½ hours, it really is like they are “normal” kids.

I want to enjoy this. I want to be present for this time. I want to be a “normal” mom (of a preschooler and twin toddlers) as opposed to a mom of kids who need special treatment. And as much as I am grateful to the hospital for their care, I don’t want to have one foot in their world and one foot in ours. Not now. Maybe later.

In about thirty minutes I will drive down to the hospital and tell the Family Advisor Council in person. I will tell them about the twins, thank them for the year I was able to spend with staff as a member of the Partnership Council, and wish them well.

Dear God, I think I just grew wings. I think I might fly to the hospital instead of driving.

Our "Normal" (albeit half-naked) Life

Repaying a Debt

I keep hoping to make it through a Partnership Council meeting without tears.

Partnership Council is a council for the NICU made up of doctors, nurses, social workers, pharmacists, nurse managers and one parent. We meet monthly to discuss how to make the NICU a better place.

The meetings are awesome. I’ve been sitting on the council for about a year now, and it’s really broadened my understanding of our healthcare system and the people who work so hard to make it so good.

At the same time, it deepens my understanding on topics I wish I could forget about. Such as, that micropreemies are in a high-risk category for pressure ulcers. Or: how many micrograms of phototherapy that can be safely given to micropreemies without also giving them brain damage. (Answer: nobody knows for sure.)

I really wish I could forget what happened to our little guys. The three months of intensive care, the heel pricks, the intubation meds, the gavage feeds, and on and on and on. I wish I could just pick up where we are now, with their favorite “blankies” and their favorite spatulas (yes, spatulas). I wish that all that remained from our NICU days were our special Weleda bathwash and our penchant for brushing teeth five times a day.

But, no. I have a debt to pay. So twice a month I drag myself to the hospital. I offer advice on how we can educate parents about HIPAA compliance and remember why electrolytes are a twice-checked additive but human milk fortifier is not.

I’m free to walk away at any time. This is strictly volunteer work. People would understand. But that would be unthinkable. I have healthy, happy sons because of these people. I look around the table—Rita showed me how to cut a little sponge swab and put drops of breastmilk on it for the boys to suck on when they were just a few days old. Janet promised me that my boys wouldn’t go to kindgarten with “toaster heads.” Ann was part of the surgical team for Wagner’s ligation. Luella was the nurse who first made it possible for me to hold my babies (and she was just meal-breaking that day!). Monica gave us a baby CPR refresher. And John, who we did not meet until the boys were almost ready to go home, shared stories of his own twins, who are now in their 30’s. Peggy, the NICU manager, Alex, who tracks the boys’ progress at the follow up clinic, and of course, Alison. I used to think of her just as someone who was passionate about her job. Now I think of her as one of my friends.

I think that’s all worth a few tears. Don’t you?

The first time I held either boy -- thanks to Luella & Margaret

On the Road, Family Style

We took a road trip on Sunday, arriving in El Paso late last night. So of course I didn’t write and now I’m finding all kinds of excuses not to.

The road trip was great—especially for blog material. For example, I discovered that my friend’s husband is my emergency contact in my cell phone. I found out because when the restaurant in Arizona found my purse, that’s who they called. That would have been a great blog post.

Then there’s the concierge that I pelted with mind bullets because he wouldn’t let Chiara use the restroom there. He insisted that we did not have a reservation, even though we called early in the day and got a confirmation number. (He was right, actually, but I’ll save that for the blog post.) In response to his refusal to let Chiara in to the bathroom, I told him, “Then my daughter is going to pee in your parking lot.”

Nothing much happened yesterday on the excruciatingly long drive from Sedona, unless you count the discovery that my tank holds at least 18.9 gallons of gas. A quick Google search today and I see that it’s actually a 21-gallon tank, so I’m glad I didn’t freak out when I saw the empty light blink on when we were in the middle of the desert. At night. With 3 small children and a (nearly) dead cell phone.*

I guess that’s about it unless you count the little tidbits one learns on a 3-day journey. Such as: you can fit two 18-month-old toddlers in the same pack-n-play for the night. And: 4-year-olds sing loud lullabyes. Don’t forget your crayons in the car in the summer desert. Rest Areas: California has beautiful sparkly ones, but 3 out of 4 are closed. Arizona has your run-of-the-mill rest stops that you can smell from the I-40 on-ramps. Not many billboards in Arizona, which is nice, especially when you are driving through Red Rock country. New Mexico has tons of billboards, which is also nice, especially when you are looking for the next gas station.

* Marian drove with us and points out that it was dusk, not the middle of the night and while my cell phone was nearly dead, hers was charged.

Speech Delays Update

Here’s the update on the boys’ speech delays. They are talking up a storm!

Wagner has a few signs: “hi,” “bye,” “eat,” drink,” “more,” “want it,” and “please.” Michael has several signs, too, but has added his own interpretation to them. The signs themselves are the standard gestures for “eat,” “drink,” “more,” “help,” and “want it,” but they are used interchangeably, regardless of context, to mean, “Do that thing I want.” Which means that sometimes he uses the “eat” gesture to mean, “help” or the “more” gesture to mean, “put my shoes on and take me outside. SNAPPO!”

But he has more words than Wagner. They are:
bye (pronounced “buh”)
ball (pronounced “bah”)
up (pronounced “bup”)
banana (“bah”)
apple (“bup”)
pumpkin” (“bah”)
socks (“bah”)
jacket (“buh”)
teeth (“buh”)
blanket (“bahh!”)
Mama (pronounced “mama”)
Baby Mum-mums – the best baby treat EVER because it melts in your mouth, not in your hands (also—sigh—pronounced “mama”)
and hat (“baah” – it’s a little different with the long Danish “a”)

He also has some phrases:
• “Bah?” (followed by a smile where he bears his teeth and flutters his eyes)
Translation:  May I have some of your delicious Frosted Flakes?
• “Baaaaaaa!” (accompanied with the stomping of feet and the waving of hands)
Translation: What is WRONG with you?
• “Baah!” (emphasis on the first “a”)
Translation: Kiss me again.
• “Bah?” (cocks head and smiles bravely, not as fake as his “feed me” smile but not as sincere as his “kiss me” smile)
Translation: Let’s go to the park! (this is often followed by “Baaaaaaa!” and stomping and waving)
• “Baaa-AA-aaaa!” similar to What is wrong with you? But the extra syllable changes the meaning slightly to: I hate you! You're the worst mother ever! You have ruined my life!
And finally
• “Bah!”
Will you read me this book, please?

In short, Michael has several signs that all have the same meaning and one sound that means several different things.

And of course, they talk to each other all the time. Completely unintelligible conversations that only they understand.

Happiness Nut

My family thinks I am some kind of happiness nut, like I’ve joined some kind of kumbaya cult and spend my days playing a tambourine in the park. Or the subway. The family that’s in the Midwest shakes their heads. Only in California. The family in California shakes their heads. Only in Berkeley. Of course I’m defensive. This isn’t “hippy Berkeley!” This is U.C. Berkeley! This is empirical science!

Of course I look like some kind of blissed-out wingnut. Last August I started a google group called “Sharing Happiness.” The idea was to create a place where people all over the world could share things that made them happy. I forced family members to sign up (well, I didn’t really force them, I just signed them up myself.) Usually it’s just me writing about some great thing that the twins did, such as smile or burp, or some absolutely fabulous thing Matt did, like take the 5:30 a.m. shift again. I’m aware that it could look more like Janine procured an audience for herself, more like “Blaring Narcissism” rather than “Sharing Happiness.” But that’s not the intent. The intent is to share stuff that makes us happy.

I’m not the only one who posts. My mom posts frequently, as do a couple of my sister-in-laws, a cousin, and every now and again, an aunt. In the beginning there was a discussion on “bragging.” At what point did sharing what made us happy become bragging? The group decided bragging was in the eye of the beholder. If you couldn’t brag to your own family, who could you brag to? And if you couldn’t be proud of your own family or happy for them, then maybe you should work on that. (Sidenote: we also closed the group to outsiders so that it is 100% private and off the radar.) I also pitched the idea to the Greater Good Science Center and it got picked up as a community gratitude journal that posts every Friday.

“What a fabulous idea!” was the initial response.

“Why don’t you be in charge of this?” was the next response.

And with that I was given a username and password and access to the Greater Good Science Center’s website. Every Thursday evening around 11:30 p.m., I format the contributions collected throughout the week (my mother, always hoping for a better grade, can usually be counted on for two or three thankful quips) so that the post is ready for Friday morning.

I always add a gratitude signed with my first and last name as a way to take ownership of my thankfulness. I want to set an example. Many people post anonymously as “grateful mom” or “happy dad.” Sometimes I post anonymously, too. These gratitudes are the ones that I’m really thankful for, but don’t really want to take ownership of, such as: “I’m grateful that our downstairs neighbors are sound sleepers.” Or “I’m grateful that the bank didn’t return that overdrawn check.” Still other gratitudes never get posted anywhere. Such as, “I’m so happy that Wagner’s O.K. after falling down the stairs.”

The impression I give is that I’m just a little too loopy from taking care of all these small children and that I float around like a Stepford Wife or some kind of Forty-year old Pollyanna.

But the real reason I have the community gratitude journal and the sharing happiness group is because when the twins wake up at 5:30, Matt gets up and he changes their diapers and reads them books and then when Chiara wakes up an hour later, he feeds the three of the breakfast and gets them dressed and two hours after that, at the reasonable hour of 8:30, I crawl out of bed, look at my lovely, clean, fed, and dressed family and say to the man who made them so, “Wagner’s wearing the wrong socks.” And then before his head can explode, I usually add something like, “Can you work from home today? I want to go yoga.”

And then it dawns on me that if Matt’s head does explode, I will have to raise three kids by myself. And I will have lost the husband that I love so, so dearly—a wonderfully funny and caring person who makes Mary Poppins look like a cracked-out slacker.

So I thought that maybe, just maybe, if I started consciously thinking about how grateful I am—if I wrote it down and shouted it out—that I might wake up in the morning and see my beautiful, clean, dressed, and fed family and say, “How can I help?” or “Thank you, Matt. Sleeping in until 8:30 makes such a difference.”

Just Another Ambulance Ride

I love buried leads. They’re so exciting to me.

SO – biggest disappointment of the day. There were two. One was a book we bought at the bookstore: The Name of This Book is Secret. Which is just a disappointment because it’s waaaaaaaaaaay over Chiara’s head. We just finished The BFG by Roald Dahl (I’d never heard of it, either) and before that we’d read James and the Giant Peach and Chiara’s really into chapter books now. Regarding the Name of This Book..let’s just say that I agree with the review from Commonsensemedia.org:

Commensensemedia.org, in an average review, criticized the similarity to Handler by saying "Apparently trying to take a leaf from Lemony Snicket's books, he gives incessant warning about how dangerous it is to read this book; this, combined with the utter lack of anything that justifies the build-up, comes across as lame at best and annoying at worst."

Chiara didn’t like the book, either. We decided to shelve it and read ABC Peas instead.

The other disappointment today was not being able to see the ending of this teeny-bop movie on the Disney channel. It’s about auditioning for Twinkletown, the musical. There’s a mean, blonde Nellie Olsen-type named “Sharpay” and a sweet underdog protagonist, Gabrielle Montez (apparently “Latina” is the new “smart brunette”). I’m pretty sure I knew what was going to happen with callbacks. Although right when the RN called us out of triage, the basketball teams was trying to convince Troy Bolton to play in the champion basketball game instead of showing up for the audition.

I wanted to go back the ER waiting room to see the end of it, but Wagner was really wailing and by the time he fell asleep, he was twenty minutes into his IV feed, so we were kinda stuck in our room until the blood tests came back. And of course, by the time the doctor cleared us for discharge, the show was over. I guess I can be grateful that I didn’t drive to Children’s Hospital; if I had, I would have missed the beginning of the show. That ambulance showed up 3 minutes after the 911call. Such efficiency.

It was a very surreal day. Five hours at the hospital because Wagner had a fever of 105 degrees and the anxiety I felt was because a) I couldn’t update Matt; there was no cell phone reception and b) I was missing the undoubtedly climatic ending of "High School Musical."

I guess this is what too much hospital life does to you.