courage, part II

Earlier in the summer I wrote about courage and whether Evan and I have been courageous in coping with Iris's diagnosis. I was struggling to figure out what the appropriate actions were for us to take in the face of the pretty gloomy prognosis. I considered quitting my job and quitting my dissertation to focus on being a mom and on raising money for research on the ACTA2 mutation and pediatric strokes. It's easy to find purpose in life when faced with what seems like a constant life or death situation. Your purpose becomes life. It's that simple and that complicated.

As the year has worn on I've continued to struggle with what my next steps should be. I've come to the conclusion not to make any drastic changes. I was a small signature away from quitting my dissertation altogether and somehow I've made the decision to keep going on it, same with my job. If I have to come up with a logical justification for it, I guess it would be: I don't want Iris's genetic mutation to become the most important thing in our lives. It is always going to play a leading role, but I don't want it to be the only thing that we do and the only thing we are about.

Back when we first got her diagnosis - not even a year ago - we decided that we wanted to focus on making her life (and our lives) meaningful and always to emphasize the idea that a long life does not equate to a meaningful life.

The most meaningful thing I think I can do for myself and for my family is to cultivate and spread opportunities for joy. This state of being has almost nothing to do with what we do or do not accomplish; instead, it has everything to do with our perspective and what we choose to surround ourselves with.

With that in mind, I want our lives to be as ordinary as possible and I want for us to find joy in the ordinary.

halloween

This was Iris's first legitimate Halloween. We did dress her up last year (as a dog) and passed candy out to the neighbors. She didn't understand why we were so excited to get her dressed up but when we showed her herself in the mirror she tolerated the costume a bit longer. Really, though, we didn't do much to celebrate. 

Iris as a dog in 2014

This year we had our housemates to lean on for Halloween oomph. Troy and the kids carved a pumpkin, which put us light years ahead of where we were in 2014.

Gutting the pumpkin

We also took Iris trick-or-treating this year, even though we're not going to let her have any of the candy winnings. She dressed up as a koala and genuinely enjoyed dressing up. She is at an age where she wants to be EXACTLY like everyone else and so it's easy to get her to dress up if everyone else is doing it too. I'm not sure I love this inclination, though it does help with potty training.

A koala, Snoopy, a sunflower, a zombie marshmallow, and a mermaid.

The day after Halloween we asked Iris what she remembered about going trick-or-treating. She said, "dogs." There was a dog that scared her at one house. I asked her if people gave her anything when she was at the houses and she didn't seem to remember the candy...we left it at that. 

gi checkup

We had a routine checkup with the GI specialist on Friday. Iris has weird digestive issues due to the ACTA2 diagnosis, but they've been even weirder since August. I was explaining the details of it all to the doctor during our appointment and Iris got very embarrassed and hid her face in my lap. She's shown her ability to be embarrassed since she was a very young toddler, but this is one of the first times I've noticed her being embarrassed when I am talking about her health problems with someone.

I imagine most kids don't want their moms talking about their pooping to strangers, even 2.5 year olds. Generally, though, Evan and I do our best not to talk about her medical issues within her earshot but it's very difficult. We aren't trying to keep things a secret from her, but she's just not old enough for us to try to explain it all to her so it's better to shield her from what we can.

We know from her past visits that she has a small gallstone and that there's not much we can do for that unless we want to get her gallbladder removed or start her on another lifetime medication. We've opted to do nothing since it's small. We also know that she does not have malrotation, which is something that other ACTA2 kids have had.

glasses

Iris got glasses. We took her to her regular ophthalmologist appointment and he decided it was time to give her glasses. He has told us in the past that she was very far-sighted (like all kids) and that as you get older you become more near-sighted. 

He also said that he wouldn't have decided to give her glasses now but her left eye is doing more work than the right eye since it's less far-sighted, and in fact, he would rather see her more far-sighted in her left eye since we know that both eyes will become more near-sighted in the future (since that's what happens with all kids). He also emphasized that the far-sightedness in the right eye is very slight. 

While I did know that many of the other ACTA2 r179 kids have glasses, I hadn't realized until later that almost all are far-sighted, and many need bifocals. So I guess it would be a safe bet to think that Iris might need bifocals in the future.

It's hard to get too upset about her needing glasses, though, considering that we originally thought she had aniridia, a condition far more vision-threatening. And she's so darn cute in these glasses. I took her to pick out her frames and she decided she wanted blue ones since blue is her favorite color. (I'm not sure how long blue will hold on to that title.)

"I'm really brave."

There's nothing that makes you feel like a worse parent than watching your child fall down stairs, fully expecting that you will have been there to catch her.

Iris and I had a miscommunication on our stairs, due to my lack of full attention on her.

I did my best not to panic as I picked her up by her left thigh (I did catch her, but not before she hit the stairs chin-first). When I try not to panic I do the same thing: "Oh God, Oh God, Oh God... Okay, Okay, Okay...." and try to assess how much of an emergency it is (do I call 911? do we go to the emergency room?). When I saw her face her mouth was starting to bleed but I didn't see any other bumps on her head. I had the words of our neurologist (or cardiologist?) going through my mind: The threshold of taking her to the emergency room is lower than for other children because her blood vessels are more fragile. Bumps on the head should be taken especially seriously because she is at higher risk for hemorrhage.

As I tried to calm her down and explain to her that we might need to go on a car ride, she settled down surprisingly quickly. She really wanted her daddy who, unfortunately for all of us, had just left for two nights on a business trip. I gave her some Tylenol through the undamaged side of her mouth and was able to see that she didn't seem to have hit her head. The only visible damage was to her lip and her lip was the only place she said hurt. All her teeth were in tact and no damage to her tongue or sides of the mouth. She did seem mad at me, that's for sure, but she wasn't acting differently (aside from being in pain). I tried calling Evan (several times) and finally got through. He was calm about it (and not at all mad at me for letting Iris fall down the stairs), and we decided that she probably didn't need to go to the emergency room.

It was getting close to bedtime so I got her a bottle and we went upstairs to sleep. After she spent some time looking at her lip in the mirror, she went to sleep. The night started off quietly but didn't stay that way. She cried for a long time for her daddy and seemed to be in some kind of gut pain, maybe from the lentils I gave her for dinner (?). But after a while she fell asleep again.

I stayed home from work and she stayed home from school on Monday so I could keep an eye on her. I quickly realized that she wasn't going to let anything near her mouth, except a bottle. After a while I decided that I was going to have to try to reason with her instead of reward her with prizes for letting me put stuff in her mouth.

I explained to her that I wanted to touch the undamaged side of her mouth and she let me do that. I asked if it hurt? "No," she said. Then I touched some puffy snacks to the side of my mouth and told her that I wanted to try it on her. She let me, and again, it didn't hurt. She happily ate a lot of puffy snacks, which have basically zero calories, but at least she ate something. That was the extent of her eating until the late afternoon (despite several other attempts), when I was able to get her to eat some buttered pasta and take some Tylenol, with the help of "Bubble Guppies."

This photo doesn't do it justice.

Thankfully, mouth wounds heal quickly so I'm hoping that today will be better than yesterday. I'm still not ready to send her back to school since she's not really eating or drinking without extra convincing.

Lessons learned: I'm glad that I was the negligent parent in this situation because I think I would have had a very hard time forgiving Evan for such a gaffe. The truth is that I'm not having the easiest time forgiving myself, either, but I've had a good reminder that accidents happen to everyone and kids are very, very resilient.

Iris has been saying, "I'm really brave," and she is, even if it's because we force her to be because of our medical treatments or our mistakes that turn into boo-boos. She's also one of the least risk-averse people I know.

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

courage

I've mentioned in passing that Evan and I have amassed a set of books to read as a way to process where our lives are and where they are going. Maybe I'm the one who has mostly amassed the reading list. Included on this list is Being Mortal: Medicine and What Matters in the End by Atul Gawande. One of the final chapters is titled "Courage."

He begins the chapter by telling of Plato's dialogue Laches, which deals with the subject of courage. What is courage? I can't speak for Gawande's interpretation of the text, but he concludes with observations that particularly resonate with our experience: 

"Courage is strength in the face of knowledge of what is to be feared or hoped. Wisdom is prudent strength.

"At least two kinds of courage are required in aging and sickness. The first is the courage to confront the reality of mortality - the courage to seek out the truth of what is to be feared and what is to be hoped....But even more daunting is the second kind of courage--the courage to act on the truth we find. The problem is that the wise course is so frequently unclear. For a long while, I thought that this was simply because of uncertainty. When it is hard to know what will happen it is hard to know what to do. But the challenge, I've come to see, is more fundamental than that. One has to decide whether one's fears or one's hopes are what should matter most." (p. 232). 

To take this further, one has to decide how to live given the likelihood of a variety of outcomes. The problem with dealing with a rare diagnosis is that medical professionals don't have much to tell us about what to expect. There aren't enough cases to draw statistical conclusions and so we are all running on case studies and personal experiences of other families. So in other words, how do we figure out how likely it is that our fears will come to pass? We have to go on gut feeling and the stories of the roughly 20 other families with the ACTA2 r179 diagnosis. 

I think that we've embodied the first type of courage in facing Iris's diagnosis. We have sought the truth of what is likely to happen and haven't shied from it. The second type of courage... the courage to act is more difficult. What do we do with the knowledge we've gained? This is where I'm kind of stuck.