end of summer

Hiking at Lair o' the Bear

The end of summer surprised me this week.

Iris's daycare had it's official "back to school" night - our first ever. She goes to a Jewish preschool that is on my way to work. I haven't mentioned it much, but she's been attending 2 and then 3 days a week since April, though with several short breaks over the summer -- some voluntarily (vacations to California and New Mexico) and some not (recall hospital stay).

Iris is possibly the most social and outgoing toddler I've ever met. She loves kids, especially. Even with all that, she still doesn't like going to school in the mornings. She always says, "No kids. No school," while we drive there. But she very rarely cries when I leaave and instead goes off and plays either by herself or with another little child. I think she has two difficulties that contribute to her anxiety at school. One, not everyone understands her; and two, she does not follow directions well. I very frequently have to count to three before she obeys me or I have to tell her what the consequence of her disobeyance will be ("I'll take away your blue blanket...").

Part of the surprise at the end of summer comes because we've been so busy right up until the end. We have welcomed Evan's best friend and his family to stay with us in our house for a while, which has been great fun for us all. Iris loves the three new kids we have roaming around our house. We don't have a huge house so it is admittedly a tight fit, but Evan is right when he says that it wouldn't be as easy with any other family.

We also had a vacation to California for Evan's parents' 40th wedding anniversary (wow). Iris got her first taste of ocean (literally) and spent hours running through the house screaming with her cousins.

Playing in the California sand

And, lastly, the excitement of getting ready for school has been supplanted by preparing for a new baby sister, coming in January. I keep forgetting that I'm pregnant, though recently it's been harder to forget. Iris, on the other hand, announces it to people frequently: "I have a new baby sister!" and "I'm a big sister!"

New baby sister

twenty-one months

New words come out of this girl's mouth every day. She is making jokes, lying, and constantly surprising us with the things she remembers. Lately, she has been saying people's names and then saying, "Come!" I ask her if she wants that person to come over and she says, "Yeah!" 

It's such a privilege to get to watch this little human grow up. We have been working on having more family fun and mostly succeeding at it. Iris loves backpack walks, though if she's hungry they don't work so well. 

Playing with Mama's keys

Backpack walk

Today I was playing Raffi for her and the song "Thanks a Lot," came on. She said, "Hug..."  and then, "Kiss..." in the direction of the music. I asked her if she wanted to hug and kiss the song and she said "Yeah!"

Here are the lyrics: 

Thanks a lot,

Thanks for the clouds so high.

Thanks a lot,

Thanks for the whispering wind.

Thanks a lot,

Thanks for the birds in the spring. 

Thanks a lot,

Thanks for the moonlit night.

Thanks a lot, 

Thanks for the stars so bright. 

Thanks a lot, 

Thanks for the wonder in me.

Thanks a lot, 

Thanks for the way I feel. 

Thanks for the animals, 

Thanks for the land,

Thanks for the people everywhere. 

Thanks a lot,

Thanks for all I've got.

Thanks for all I've got. 

processing

In high school I played volleyball. Before big games our coach would have us visualize the best possible game we could play. She had us imagine the perfect pass, set, hit. She had us visualize the win. This exercise is helpful now as we process the ACTA2 diagnosis.

Evan and I talked the other night about how we were both processing this new life we've been inducted into. He said he doesn't know how or even if he is processing it. He thinks about it, we talk about it, but processing? Not sure.

For my part, processing involves a creative imagination and visualization of the possible future realities we'll face: waking up to find Iris has had a stroke; getting the news that her intestines are malrotated or that she has gallstones; waiting while she has any number of surgeries on any number of body parts; talking to her about how she can decide for herself what will make her life meaningful; walking, lots of walking outdoors. The more we imagine, the more prepared we will be to respond to the worst of it without panic. Evan liked this idea and said it made him feel better about what he worried might have been just zoning out. 

Processing also involves research and finding others like Iris. I've started doing a literature review on all ACTA2 r179 articles. I've joined a Facebook group specifically for those with her mutation. Evan and I both have considered getting tattoos in honor of Iris. This was something we came to independently.

I'm equally concerned with Iris's physical well-being as I am with her (and our) emotional and spiritual well-being. I'm sorry to admit that we spend far too much time talking about medical issues in front of her. I'd much rather shield her from those conversations at this point and instead focus on fun. Evan has said this in passing a few times -- usually referring to our need for a date night -- that we need to have more fun.

We (or I) have amassed a slew of items to help us figure out how to forge ahead. One of those is a TED talk by Andrew Solomon, who talks about how the worst moments of our lives help make us who we are. His talk is beautifully inspired.

fifteen months old

The summer is flying by so quickly. There was a heat wave recently that made sleep extremely difficult. Evan got a portable air conditioner for the upstairs. Luckily cooler weather means that I'm getting more sleep, as long as I don't have any caffeine during the day.

Iris and her juice

I took Iris to the Mordecai Children's Garden at the Denver Botanic Gardens on Monday. There is a man-made creek to wade in that she loved. She also met another 15-month old girl named Iris! The mothers were amazed. 

Iris and her juice, again.

Iris is adding new words to her vocabulary every day. So far she says, "Mama" and "Dada," obviously, but her most recent additions are "on" and "up!" She's a little confused about "on" and "open" so she just says "on" when she wants something opened. And, well, she says "up" when she wants down. Her other words are a little hard to understand for the uninitiated. "Gaga" means car or dog; "gugu" means cookie; "dudu" means juice; "nana" means banana, or Nonna (Evan's mom); "baba" is anything starting with a b, mostly bear, or ball.

Her sign language is also pretty good. She uses the signs for "more"; "help"; "all done"; "milk"; "Daddy"; "owie" (or "it hurts"); "birdie"; and "book." And, of course, she points and grunts at things she wants.

Iris and her juice, again.

 Perhaps most surprisingly, she has figured out how to say "I don't know" and also it's appropriate usage. As in, "Iris, where's your bear?" To which she responds, "I don't know," if she actually doesn't know. I had taught her the sign for "I don't know" so she also uses that, but mostly just for fun.

A few days ago I had been out for a bit and when I got home I found this baby, below. Everything looks fine, right? Well if you look closer, you'll see her diaper is on backwards. Evan claims not to have noticed that he put her diaper on backwards.

What's wrong with this picture?

As for other happenings, Evan and I went on a double date with some friends last weekend and had dinner at a French restaurant after exploring Hudson Gardens in Littleton. We also had our first visitor from Pennsylvania. A friend of mine from my PhD program was making the cross-country trip to start a new job in California and he stayed with us a night. It was so good to catch up with him and it got me very motivated to keep working on my dissertation.

july fun

Evan's birthday falls very close to Independence Day, so the first weekend in July was full of fun, in spite of Evan's recent claim that, "We never have any fun, ever." This may be true, but I don't think it's for lack of trying. It may also be true that we have trouble prioritizing fun in our family. In any case, I sought to right the funlessness, if just for an afternoon. Evan did his part by eating enough to have extra energy for the outing, and even took extra B vitamins.

Our nanny watched Iris so Evan and I could go out (I haven't mentioned the new nanny yet, right? I'll say more later). We loaded up our bikes and went to South Pearl Street to have a meditative foot bath at the drop-in meditation center and then we rode bikes through Wash Park on our way to dinner. We were both fully relaxed and happy to be out in the summer weather together.


For the Fourth of July, we went to our neighbor's house for a cookout and had a good time being in a new place, and meeting new people. Iris had a bit of a meltdown early in the evening so we went home and made sure she ate and drank well. She still hasn't seen fireworks in her lifetime, this may be a parenting fail.

The weather has been terribly hot and we've all been suffering from the lack of air conditioning in the house. Our rooms are upstairs in the hottest part of the house. Thankfully, Evan installed a portable air conditioner that is doing wonders for us all. Our first night with it wasn't spectacular, however. Iris was up needing milk a couple times and then got cold early in the morning. Hope springs eternal, though. Maybe tonight she'll sleep better.

I hired a nanny about a month ago so that I could actually make progress on my dissertation. She is in massage therapy school and has a daughter of her own. She is great with Iris and is teaching Iris more sign language. I usually work from our home office but lately the work has been more related to dealing with health insurance and oxygen issues, rather than my own dissertation work. I absolutely need the free time to deal with the pile of bills.