Friday, December 13, 2013


Dominic is playing with the Fontanini Nativity that I juuuuust pulled out of the Advent Box.

"And suddenly, Mary is bited by a Great White shark!"

Too much Shark Week, not enough O Antiphons over heah

Saturday, December 7, 2013


Yesterday was a long day of various tests for Gianna at the Massachutes Eye and Ear Infirmary. The most important test was also the trickiest; the electroretinography requires this crazy-looking contact be inserted in the eye. Some places sedate children in order to do it but our G was a sport and we got it done with no anesthesia.

The tests took most of the morning and after a short lunch break we went back for test results and consultation with Dr. Berson, the big-name guy we'd traveled up here to see. It was worth the 18ish hours of driving with 3 little kids losing their minds at various points. He said that although Gianna's test results indicate a retinal problem consistent with Usher Type 1b, the eye disease is very mild at this point and he expects her to have a lot of useable vision for a long time.

He said, and I quote, "when I go home tonight and think of Gianna, and I will, I'll think positively because she has strong waves (on the ERG.)"

He was the kind of older gentleman who wouldn't have sugar-coated anything and that made his positivity that much more valuable. Even though it is the opinion of one doctor about a disease that lends itself to a certain degree of unpredictability, I felt like a new person when we left his office. He was adamant that Gianna's education was unlikely to be negatively affected and suggested we begin Vitamin A palmitate supplements (after a liver scan) as well as being sure Gianna is eating oily fish at least twice a week (he has been running clinical trials on the effects of Vit A and DHA on retinitis pigmentosa.)

Our hotel is within walking distance of the Massachutes Eye and Ear Infirmary (such a solid, patrician sounding name) which is connected to Mass. General Hospital. It's very bustle-y and pretty close to lots of universities and colleges (sooo many smart-looking people striding about purposefully.)

This was our first time in Boston and what we've seen is so cool. We walked to the New England Aquarium which is right on the wharf. I like old stuff and I've always been sort of fascinated by this part of the country and it's proximity to the sea and all of the history behind it. The kids enjoyed the aquarium despite the fact that all of the big sharks have been moved to an aquarium in Quincy while the tank they are normally in is treated for a parasite. The aquarium offers free admission to people with visual impairments and I'm just so thankful we had to pay the full price of admission for everyone.

Thank you all for the prayers and offering of sufferings, small and large. They have been fruitful not just in terms of the good news we received on this trip but in the peace and hope that I was beginning experience again prior to this doctor visit. I am so humbled by how generously everyone has prayed for us. Thank you.

Wednesday, December 4, 2013

Inner Life, Revealed

If you send your children to school it is important to cultivate your image with the school staff so that they don't know how crazy or unwashed your family really is. Here I wrote about how to head off a child's possible misbehavior and here I wrote about sticking to your image even when it seems ridiculous to do so.

Recently, Gianna came home with information about a program called XtraMath. I have numerous problems with this.

Firstly, the title strikes fear into my heart. Why extra? Why any, at all? But I'm trying not to pass down my problem with math to my children, so I have to pretend like my horrified exclamation "Extra?! MATH!?!?" is really excitement. I should be able to do this with no difficulties because I have a minor in theater but I am so tired. Acting is hard, as my acting prof declared freshman year. No, good sir, PARENTING is hard.

Secondly, this program exists on the world wide web and requires log in names and sign in names and passcodes and email addresses and passwords and parent ID numbers (sonuva...more numbers) and student ID numbers and I can't keep them all straight. I'm thankful we have such great technology to assist with education, we could be using an abacus or something equally rudimentary, I get it, but for real can we get some flashcards up in this piece?

Gianna loves it. Straight up, will sit for an hour doing XtraMath. You know who else loves it? Brad. The Dad. Schueler. He asked to play, too, and almost started doing problems under Gianna's name but I had to stop him because her teacher can log in and see how she's doing and if he starts messing with it our kid is going to look like a big, fat, cheater. Or a math genius. Either way, it's no good.

Not one to be deterred, Brad added himself under my parent account. I now have two children enrolled in XtraMath. Their names are Gianna and Giannasdad. He's up to multiplication now. I'm just so proud. Any sort of illusions I had with Mrs. Dickman possibly thinking we're just a regular family are gone, baby, gone. Oh man, I like to laugh at this stuff. I hope Mrs. Dickman finds us as amusing as I do.