Easier Than it Looks on Paper

Life at our house is really loud. And messy. We have a lot of poop, snot, muffin crumbs and dust bunnies (although not in that order. We have far more dust bunnies and muffin crumbs than we do poop or snot).

What's amazing to me is that 1) noise and chaos do not drive me into a homicidal rage the way it did 5 years ago and 2) in spite of said noise and chaos, that every day things "fix themselves."

Like today. Matt has his first law school exam--a take-home that he has the weekend to take. So we sat down and blocked off times for him to nap, study, go to a review at school, go to Nutcracker rehearsal, etc. (I really have "Matt Nap" on our family Google calendar). Today we blocked off as a "Matt day," meaning that I had the kids all day. Not a big deal except that today was the first time I'd tried to take all 3 of them to Mass by myself.

Mass with the twins is...interesting. They are so loud. Not crying-loud. Laughing-loud. They play peek-a-boo with each other, they smack the pews and cackle. So then we started bringing books (our parish has a book box for kids). That actually didn't cut down on the noise much because they spend the hour looking at books, pointing at pictures and saying (loudly) "Moon!" "Star!" "Apple!" "Pumpkin!" (the boys are big into pumpkins.) Or they thrust the book in our faces and demand that we read. Last week Matt and I decided--no more books.

Flash forward to today. Raining cats and dogs. Which means it takes 35 minutes to drive to a church that's 4 minutes away. Raincoats on, boots on. Umbrellas. The boys HATE any new footwear, but somehow we got the boots on. (only to have them fall off as Michael was ascending the stairs: "Wet!" he said, pointing to his sock.) The good news is the boots really slowed the boys down, and they stayed in the pew the whole time. (Michael was afraid to move his feet at all).

In lieu of books, I brought those little magnetic pencil drawing boards. And somehow the boys even made THOSE loud. I don't know how it's possible to scratch so loudly, but the boys know. At one point Wagner got upset about something or other, and I had to leave with him. He was screaming and kicking so much that I couldn't take both boys with me, so I just left Michael there in the pew in his over-sized rainboots, scratching on his magnetic drawing board. I thought he would freak out when I left, and I kept watching through doors to sanctuary, but he was fine. I couldn't see him, but I could see the people in the pew behind us, I figured that if he started crying or walking they would look around, like, "What terrible mother has left this kid behind?" They were paying attention to the homily, which meant that whatever Michael was doing, he was quiet about it.

Chiara was in the Children's Liturgy at this point. Mass would have actually been easier had she stayed behind; she would have been able to watch Michael while I was out with Wagner, or come get me if something bad happened.

Meanwhile, Wagner had thrown himself on the floor of the foyer, kicking, crying, red-faced. I just stood there and watched him. After five minutes, he was fine. He picked himself up, dusted himself off, smiled and said, "up?" We went back in. Chiara came back from the Children's Mass and we switched out of our rain boots into our regular shoes to do the Communion procession--always a disappointment for the boys because each Sunday they hope that today's the day they get one of those little crackers instead of just a hand on the head.

It was all very manageable in a weird way.

Then we all came home, had lunch, and then everybody napped for two hours. (Including me.)

Our Daughter is Gone - Woo Hoo!

Our daughter is gone for ten days. Nonna took her to Texas last Friday and will bring her back next Monday. I’m sure I’ll miss her eventually, but it’s been heaven so far. Mornings are completely without drama (unless you count the boys clinging to my legs when I drop them off at daycare—something that never happens when Chiara is there to play with them).

Bedtime for the boys is 7:15 and then Matt and I have the rest of our nights to ourselves. Last night Matt went to the daycare board meeting (during which they watch your kids AND feed them dinner) while I got sushi to go. When he and the boys got home, we put them right to bed and ate makimono by candlelight. It felt like a date night. (And then he stayed up for another four hours studying)

Meanwhile Chiara is doing puzzles and playing games and giving ballet performances. Tomorrow she will fly to Austin with my dad & stepmom to visit Jackie, Jeff, Liz, Maria, & David. Sunday she flies back to EP. Monday she flies home.

It’s true that it’s quieter (and cleaner) without the force of nature that is Chiara Noelle, just as life is always quieter and cleaner without little people around. But quieter and cleaner doesn’t mean better. After all, laughter and singing always trump quiet. It’s hard to remember what merits messes may have, though. Perhaps they are just the byproducts of playing just like krypton is a byproduct of uranium extraction.

At any rate, quiet and clean is nice and refreshing for the moment. Pretty soon “quiet and clean” will become “dull” and by that time Chiara will be on a plane back to visit us.

The Last Letter

This Thursday is a NICU Partnership Council meeting. I know because they emailed the meeting agenda to me. They emailed the meeting agenda to me because I conveniently forgot to tell them that I wasn't going to be on the Partnership Council anymore. So I sat down and wrote a  letter. And I cried. I cried because they have helped me so much and I cried because I cannot wait to get outta there and I cried because there are things I cannot say.

But here's what I did say. It goes in the mail today and I hope they get it by Thursday.

(If you've been following along in the blog you might like to know that I did "First Thing Monday" back in August, tell Alison, the nurse manager and friend who brought me on  board, about my decision to leave. We talked for about an hour. A week later I talked to the Family Advisory Council in person. I just haven't said anything to the Partnership Council people yet.)

Dear Ann, Pam, & Jack,
(and Peggy & Alison & Nicole & Rita & Luella & Alex & Mina & everyone else who make time for Partnership Council)

About six weeks ago, an amazing thing happened. The boys--25 wkrs who will be 2 at the end of December--"caught up." Suddenly they were climbing ladders (and bookcases). They were stacking blocks and kicking balls, drawing on walls and saying ,"MINE!" They aren't "micro preemies" anymore.

I am so eager to embrace my new identity as "Just a Mom of Twins Who Climb Bookcases" and so unexpectedly relieved to shed my identity as a "Micro Preemie Mom." It's like our family grew wings. Sadly, grasping our "present" means (at least for right now) leaving the Partnership Council.

It makes me so sad to write this card, even though I know you folk understand better than anyone. I loved being a part of the council. I learned so much from all of you--your strength as a group, your collaborative spirit, your thorough problem-solving (even problem-solving how best to solve problems). You are truly integrative, inclusive, and compassionate. You bring your "nurses' hearts" to the table (even those of you who are social workers, pharmacists, and doctors!) Thank you for this last year as a member of your inspirational team.

I look forward to the day I can remember my days at the NICU without reliving them. And when I can, I hope you'll still have some empty seats at the table.

With deep regret,
and even deeper appreciation & gratitude,
janine

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.