gratitude

Dara and Iris before Thanksgiving dinner

I intended to spend more of today in a state of gratitude. I started off fairly well -- feeling thankful for the hot water in my shower as it got progressively cooler the longer I stood there. The day got away from me with hours spent with friends and, well, when you're in the moment it is sometimes hard to remember to be thankful. We spent a couple hours with Jesse & Amanda (and baby Owen) at their house in the morning. And then in the afternoon went to Jill's parents' house for the big meal. They are Jewish so we also got to do the lighting of the candles with them. Jill's parents got Iris a Hanukkah gift: blocks. I had been thinking that she doesn't have enough blocks and balls around so I was glad for this gift.

So now at the close of the day I'll spend some time feeling and expressing gratitude. I have been thinking a lot about how we can teach Iris to be thankful. This is a difficult concept to grasp -- even for adults. I suppose it's a habit or a state of being that can just as easily be adopted as it can be forgotten. I happened to read this article about how to raise thankful kids today and was reminded, yet again, of how difficult this whole parenting thing is. Parenting requires you to be the best version of yourself you can be, or at least requires you to attempt to be the best person you can be. And you have constant reminders when you have failed to be that best person.

In the past, Evan and I have been known to wonder aloud whether we are "thankful enough," as if there is an appropriate level to be achieved. That misses the point, of course, because being thankful is all about the feeling of gratitude in the moment. There is never "enough" because there are infinite moments in which one might feel thankful. It can't be a constant state of gratitude, of course, but even taking a few minutes each day to let oneself feel deeply thankful would be a great improvement to the well-being of most people.

I am thankful for pediatric cardiologists. I am thankful for pediatric ophthalmologists. I am thankful for oxygen concentrators. I am thankful for sunglasses. I am thankful for technological advances. I am thankful for my husband. I am thankful for my daughter. I am thankful for my parents, my brother, my extended family and for Evan's family. I am thankful for our house and for all the work Evan has put into it. I am thankful that we live right across the street from a gym. I am thankful that we will be able to afford daycare starting in March (if just barely). I am thankful that Iris got the RSV vaccine and the flu vaccine. I am thankful for getting closer to sleeping through the night. I am thankful for my book club. I am thankful for my Penn State friends and colleagues. I am thankful for friends. I am thankful to live in such a beautiful state. I am thankful for our meditation cushions. I am thankful that the worst seems to be behind us.  I am thankful for morning naps.

Iris and Evan having a morning nap

entertainment

This past weekend was light on housework/renovations and heavy on entertainment. On Friday, I had a girls' night. The wife of one of Evan's coworkers was dying to see "The Hunger Games: Catching Fire" on its opening night. So he (Jesse) brought over baby Owen and another coworker, Chris, came by with his daughter, Emily. This was the first time I had left Iris for such a long time since she stopped taking a bottle. I was worried she wouldn't go down easily for Evan but turns out all the babies had a great time together. And the movie was fantastic -- I didn't want it to be over after the 2 1/2 hours.

Iris, Emily, and Owen with their daddies

Laurel came over on Sunday to watch Iris for a bit so Evan and I could go out. We had no plans but we ended up finding a New Mexican taco place called Socorro's Street Tacos. The decor was all about New Mexico, which I liked and the food was really good.

As if that wasn't enough entertainment for one weekend, we also went out on Monday night. Carmella came over to watch Iris and we went to see Bill Callahan at the Oriental Theater. Evan introduced me to Bill Callahan when we started dating. Evan's friend Jackson had introduced Evan to Bill. Jackson introduced Evan to most of the music he is familiar with. We enjoyed ourselves immensely despite my forgetting to bring earplugs. Concerts are almost always too loud for me. Below are some of my (our) favorite songs of his. I include the lyrics mostly for my mother who has a sweet way of always asking, "What are the lyrics to that song?" And then, "What does it mean?"

"Rock Bottom Riser"

I love my mother

I love my father
I love my sisters, too.
I bought this guitar
To pledge my love
To pledge my love to you.

I am a rock bottom riser
And I owe it all to you
I am a rock bottom riser
And I owe it all to you

I saw a gold ring
At the bottom of the river
Glinting at my foolish heart
So my foolish heart
Had to go diving
Diving, diving, diving
Into the murk

And from the bottom of the river
I looked up for the sun
Which had shattered in the water
And pieces were raining down
Like gold rings
That passed through my hands
As I thrashed and I grabbed
I started rising, rising, rising

I left my mother
I left my father
I left my sisters, too
I left them standing on the banks
And they pulled me out
Of this mighty, mighty, mighty river

I am a rock bottom riser
And I owe it all to you
I am a rock bottom riser
And I owe it all to you

I love my mother
I love my father
I love my sisters, too.
I bought this guitar
To pledge my love
To pledge my love to you

"Say Valley Maker"

With the grace of a corpse

In a riptide
I let go
And I slide slide slide
Downriver
With an empty case by my side
An empty case
That’s my crime

And I sing (Say Valley Maker)
To keep from cursing
Yes I sing (Say Valley Maker)
To keep from cursing

River Oh
River End
River Oh
River End
River Go
River Bend

Take me through the sweet valley
Where your heart blooms
Take me through the sweet valley
Where your heart is covered in dew

And when the river dries
Will you bury me in wood
Where the river dries
Will you bury me in stone

Oh I never really realized
Death is what it meant
To make it on my own

Because there is no love
Where there is no obstacle
And there is no love
Where there is no bramble
There is no love
On the hacked away plateau
And there is no love
In the unerring
And there is no love
On the one true path

Oh I cantered out here
Now I’m galloping back

So bury me in wood
And I will splinter
Bury me in stone
And I will quake
Bury me in water
And I will geyser
Bury me in fire
And I’m gonna phoenix

I’m gonna phoenix

And here's Tiny Desk concert he did for NPR Music. If that's not enough, here's the NPR Live Concert of his current tour.

early thanksgiving

Evan's family came in to town last weekend for an early Thanksgiving. We managed to keep Teresa and Montie from doing much work on the house. I enjoyed having the house so full -- we had Garrett in the guest room, Katherine and Jeremy's kids in the living room and Katherine and Jeremy upstairs in the meditation room. Montie & Teresa stayed at a hotel nearby.

Nonna Teresa with her three grandkids

Iris had tons of people to play with and things to watch. She loved meeting her cousins and aunt and uncles.

David, Iris, and Emma reading books

David, Iris, and Emma

It did take her a while to warm up to Garrett. His big beard really terrified her but after a day or two she was having fun with him -- especially when he sang to her. It was fun to see Garrett with a baby, it's a more tender side of him I don't often see. He was very good at trying to calm her down and keep her happy.

Iris, Uncle Garrett and Iris's favorite toy -- the star

On Saturday, we took the whole gang up to Mt. Falcon park, which is the closest mountain area to our house. Sunday was our Thanksgiving meal, Monday we went to a local playground and then to the Museum of Nature & Science.

The girls -- Sarah, Teresa, Iris, Katherine, Emma

The boys - Montie, Garrett, Jeremy, Evan, David

On Tuesday everyone had taken off except for Garrett. We took him to the Colorado History museum (a bit of a disappointment) and then for lunch at City O' City. Evan suggested that we take him there because it was close to the museum. We forgot that it was a vegetarian restaurant. Taking Garrett to a vegetarian restaurant is like taking him to church. He suffered through it. Luckily, we went to Root Down for dinner, which was a smashing success. We also dropped in to the Wynkoop Brewing Company, which was started by John Hickenlooper, Colorado's current governor and Denver's former mayor.

We had Iris with us all day on Tuesday, meaning she was out of the house for 7 hours. She did really well although getting her to breastfeed in the car was a bit of a hassle. She has been extending the time between nursing sessions and it has been making me nervous. I don't like her going 4 hours without nursing. I weighed Iris earlier this week -- she is 15lbs 7oz. She still hasn't doubled her birth weight, but is keeping on her 25th percentile growth curve.

Garrett asked me whether motherhood was all I had hoped and dreamed it would be. I had a hard time answering that question because I don't remember what I had thought it would be, except that I thought it would be way easier. From what I can recollect of what I thought motherhood would be, it is way better than expected. Even with all the things that we've had to deal with, everything that Iris does is that much more special considering the immense challenges we've had to go through. I'll always worry that I'm not doing enough or that I'm doing something wrong, and it seems very likely that she'll end up just fine. I am not sure what Evan would say about fatherhood and whether is has been what he expected. He adores Iris and loves to make her laugh. I can say for certain that even before all of Iris's medical issues were discovered, Evan decided he wanted never to have a newborn baby in the house again -- too much sleep deprivation. I am hopeful that Iris and I will be able to change his mind in the coming years.

Katherine asked us about what we wanted to steer Iris towards/away. There are many things we want to steer her toward and away from but one of the more important ideas for me is that she should have an understanding of how she can influence the world around her. I want her to volunteer and see how she might be a positive force in society. She'll likely grow up not eating much meat -- neither of us will prepare it for her at home, anyway. We want to teach her to meditate, do yoga -- things that I actually have to start doing again. I suppose my overarching goal for her is to learn what it means to be healthy and to live healthfully and then to do it.

seven months old

Iris turned seven months old on Veteran's Day. She is doing everything a seven-month-old is supposed to do: sitting up by herself, drooling all the time (see the spittle on the chin below), increasing the volume of her vocalizations, and developing separation anxiety. Her favorite foods are oatmeal, sweet potatoes, and peas. I have finally started using cloth diapers, something I had planned to do since the beginning. All her medical issues grounded that plan because I somehow found dealing with cloth diapers to be very stressful. 

My dad is in town for a conference this week so we met him downtown yesterday and watched him give his talk. I know nothing about plasma physics but basically understood his talk to express that his model was better at explaining a reaction than another model. Dad was very happy to show off his granddaughter to his other physicist friends and colleagues and Iris was very happy to have the social interaction. She was also very interested in Granddad's name tag.

And here is yet another photo of her, in case you haven't figured out how she looks these days. She looks way too skinny for my liking in this photo but at least she's happy. Iris won't take a bottle so I am trying to get her to learn how to drink from a cup. This is a slow going process but I think she'll get the hang of it in a few months.

I signed her up for daycare today -- she won't start until late February/early March. It's a for-profit center. I am uneasy about sending her to a for-profit daycare, but I'll write more about that later. Despite my reservations, it seems to be a great place and it is close to Evan's work so he can deliver her.

nose-frida

Iris got sick on Thursday or Friday last week. She has been producing more snot than a drunken sailor does swear. Lucky of her (and us), my friend Tinka told me about an amazing snot sucker from Sweden: the Nose-Frida. As a parent, you do actually suck the snot out of the baby's nose. Don't worry, it never gets to your mouth.

I loved it so much that I bought two. And we've been using them both a lot. It's one thing when an otherwise healthy baby gets a snot-heavy cold, but how on earth does a baby on oxygen get enough oxygen when her nose is totally stopped up? She has been letting us know when it's time for another clearing session -- not that we could miss it. I do think that we're past the worst of it. She had a fairly good night last night and I even managed to have a couple dreams.

On an unrelated note, Evan is no longer a car-free commuter and we are no longer a one-car family. We bought a used Toyota Corolla over the weekend. This will cut his commute time by half.

overly optimistic

Iris had an ophthalmology appointment today. I'd been eager for this appointment to get a better idea of the state of Iris's irises. And if she needed glasses I wanted to get them on her as soon as possible. 

Upon meeting Iris for the first time, most people do not notice that she has any particular eye issue. It's only when Evan and I point out that her pupils are huge does anyone seem to take note. By all accounts, she tracks very well and has no problems with peripheral vision or grabbing on to what she has set her sights on. Knowing this, I was not particularly anxious about the appointment. Even though she is at greater risk for glaucoma and cataracts, it seems too early for those to intrude. 

After waiting for slightly too long a time, the ophthalmologist breezed in to the examination room. A fellow was with him, so he began the encounter by quizzing her on WAGR syndrome while simultaneously typing notes on the computer: "What do you know about WAGR syndrome?" She thought for a moment, "Let's see... Wilm's Tumor, aniridia, G is for...genitourniary, and the R is...renal?" I nodded as she finished the G and the R. "That's right," he said and continued talking -- though I have no idea what he was talking about because following him made my head spin. I did stop him fairly quickly and mentioned, "Yes, that's WAGR syndrome, but Iris doesn't have it. Genetics tested her and she doesn't have the gene deletion." He did some tests on her eyes to see how well she tracks, shined some lights in to check out the rest of the eyes and also tested the eye pressure to see where she stood in regards to glaucoma. 

When he was ready to begin telling us [Evan was on speakerphone] about his assessment and conclusion he started with, "I don't want to be overly optimistic..." and he went on to say that Iris looks great and has no need for glasses at this point. She is slightly far-sighted but he doesn't think she'll need glasses for quite a long time. He also said that she might start having trouble with cataracts years earlier than most adults, but maybe not till her 40s at the earliest. "She is probably one of the top two cases of aniridia I have seen, her eyes look great." 

Evan asked about how much care we need to take with her eyes and mentioned the sunglasses we have for her. The ophthalmologist said, "Don't get an ulcer over trying to keep the sun out of her eyes when you're in the car. She'll close her eyes if it gets too bright." He did say a floppy hat is a good idea. We were very happy to hear this good news and though we certainly may not have the same good news in the future, it seems like an auspicious beginning.

Speaking of that floppy hat and those sunglasses, we took a trip to the mountains together over the weekend:

 Iris is down to 1/16L of oxygen, which is almost nothing. I am hopeful that we'll have her off oxygen by the end of the year. We are going to Los Alamos for Christmas, though, and since it's at 7,300 ft, she might need oxygen there. 

We also went to visit Jill & Dara today. These girls are really starting to have fun with each other and we're looking forward to seeing them grow up together.

Dara's older sister, Liliana, had her 3rd birthday party this past weekend and we went to the place they do music class. I think that I will start doing a music class with Iris in January and am very much looking forward to it. 

And finally, we did some family photos a few weeks ago. The photographer is a nurse in the Cardiac ICU at Children's and took care of Iris the first couple days after her surgery. (Here's her website. Denver people -- her prices are really great since she's not a professional). She got some really great shots even though Iris was really sleepy and needed a nap. Here are a couple of good ones.

photo credit: Visible Life Photography

photo credit: Visible Life Photography

trial off oxygen