Got her culture in

We went to the Peabody Essex Museum today, where Hollis typically takes off running around the atrium and through the children's area. Today, for some reason, she wanted to stay in her stroller, and see the exhibits. This is a rarity - normally when we try this we are manhandling her away from touching the installations! I always leave seeing something I hadn't before, primarily because we don't get a chance to walk around without Hollis. She was content to go through most of the three floors (speedily) before she signalled she was ready to go. We stopped into the Polish market across the way, as is my habit when I am there. I tried to get her to eat pierogi, but she wasn't at all interested - what kind of Polish kid doesn't like a good potato dumpling?! I've got to work on the Polish traditions with her - Mom, Grandmom and Dziadzi sing Polish songs to her, but we haven't worked on the food much. Guess I've got to break out a golumpki recipe.

Destruction Junction

In the last 48 hours...

Things tossed, thrown, hucked or knocked over: shredded carrot, jellybeans, Sprite, potato chips, pepperoni, piggy bank, stuffed bear, singing frog, telephone, pillow, clock radio, books, photo album (into receptionist's lap in doc's office), computer monitor (again, doc's office), coat rack (doc's office once more).

Inedible objects attempted to be eaten, bitten, and/or mouthed: cotton ball, pen, magazine insert, telephone, light switch, diaper wipes box, lipstick from Mom's purse, hand cream tube, book, old potato chip, sneaker, sock, chain link fence, headphones, venetian blinds, chair, wood chips, flowers, grass, sand, Mom's arm, Mom's shirt, own shirt, pillowcase.

Yes, she had eyes on her the whole time, but she is also complete menace much faster than her parents. Hollis has been spending a lot of time in the time out room lately.

Trying to tire her out

One of the unanticipated side effects of the surgery is the surge in Hollis's energy level. While this is certainly a good thing, in my humble opinion she really didn't need any more! The energy is more like her being "slap happy": she gets absolutely crazy silly and starts destroying things and causing mischief. She goes through this cycle twice a day, once about 2 hours after she wakes up, and again about 2 hours before bed. We're trying to find better outlets for the energy because if she's in the house, she knocks over lamps, stomps on cats, turns on microwaves, stoves and coffeemakers, and clears countertops, all while laughing hysterically. And let me further clarify by saying that we cannot control the behavior, despite putting in her the timeout room, yelling, and trying various ways of settling her down by reducing high stimulation things like bright light or noise. So, we try to exhaust her.

Yesterday, we went to the YMCA pool and swam for about an hour straight, and left only because there was a class coming - she could have gone on and on. Today we went to the park and let her do "laps" around the perimeter. This was the first time we've ever let her walk by herself without a parent with a hand on her. She just did circle after circle, laughing the whole time, like she was getting away with something. The only time we intervened is when she would try to run into the football practice in the field next door: there were boys there, and she is absolutely boy crazy! Here's Hollis running down to the park (sorry for the low quality, I only had my phone on me.)

A question of perception

Something happened the other day while we had Hollis at the park, and I've known it's been coming for many years. We were walking up the ramp to go to the slide and a little girl, about 6 years old said to her playmate, "Run away from the scary boy!" Hollis didn't understand this, which was fortunate, but I did, and, of course, it hurt me to hear it. There was a second when I told myself to ignore it, because kids this age don't really understand what her issues are, just that she's very different, and having one side of her head shaved with a big scar certainly isn't normal either. I decided I couldn't let it go, and approached the kids gently as possible, explaining that she isn't a boy, despite the short haircut, that she has more challenges in getting around than they do, that she can't talk like they do, and that she definitely isn't scary. The kids had lots of questions after this, so I answered them in the best way I could, trying help them understand why she is the way she is, and that she's OK that way.

We've often had questions from kids, and many puzzled looks, and some who even hide, but this was the first time I've overheard a mean comment. As I said, we've been expecting this as long as we've known about her disabilities, and I promised myself that I wouldn't come down hard on those who say hurtful things. I realize that from a child's perspective, Hollis can be frightening, because she is so big, but essentially has the abilities of a toddler. This is terribly confusing! I have found that most kids are very curious once you explain a little bit about what's going on. Instead of chastising kids for making a such a comment, I'm hoping that by helping them understand one child's disabilities we will encourage them to be more tolerant and eager to learn about others'.

Busy weekend

Mom's going back to work on Monday, so we tried so jam as much fun into this weekend as we could. Saturday we went to the Children's Museum in Boston, and Hollis had enough stamina to run non-stop for 2 hours. On Sunday, we went to Rockport to go the the beach. She squealed when she saw the beach and ran right into the water. We swam around a bit, and ended up meeting one of Dad's high school buddies we hadn't seen in years. Hollis loved his little girl: she thinks babies are funny.

We've passed the 5 week mark for no seizures! We are beyond thrilled! It's hard for us to imagine life without seizures, so we still find ourselves with our hands constantly holding onto her, just in case she goes down fast. She is frustrated by all this overprotective parenting, and keeps on pushing us off. It is hard to break the habit: it's going to take a lot longer for us to feel like this is real.