Luau took Katie to one of the first Red Sox games of the season the other night. I’m not sure who was more excited. (Ok, I am, but I’m not sure Luau would want me advertising that he was downright giddy about it). They looked forward to it for days beforehand. They went decked out in their jerseys and came home still chattering excitedly about the food (cotton candy!), the crowd and the ride on the T (and oh yeah, the game). In addition to a giant foam finger, they had the sleepy hangover to remember it by the next day.
Luau and I are keenly and sometimes painfully aware of the need to give Katie some extra attention and particularly some time alone with each of us to ensure that she knows how valued she is in our family. We do it in part (no small part) because she has a sister who, by nature, can demand a lot of us all.
Loving Brooke takes time. It demands patience and restraint. Caring for her, learning about her needs, practicing what we’ve learned, teaching her, re-teaching her, sensitizing her, de-sensitizing her, evaluating her, re-evaluating her, advocating for her (and discussing, analyzing, testing, and re-testing the best ways to do all of these things) – takes time.
Joining various groups, boards, committees, seeking, researching and piecing together the resources that will make our family functional for her – takes time. Attending (and staying awake through) and sometimes running meetings – takes time. Political posturing, campaigning and strategizing – takes time.
Writing (and rewriting) and delivering speeches on her behalf takes time. Preparing for IEP meetings, team meetings, reading and writing progress reports, overseeing and constantly evaluating her education – takes time. Heck, writing these posts to keep my sanity – takes time. So, we do everything in our power to carve out special time for Katie.
Last year, we joined one of Brooke’s ABA therapists for the Autism Speaks Boston walk. It was a wonderful experience for the family. We decorated t-shirts for all of us (Brooke’s favorite color – red, of course!) emblazoned with ‘Team Brooke’ across the back. We were joined by our dearest friends and supported by an unbelievably wonderful network of friends and family. We raised a staggering $17,000 for Autism Speaks and we were thrilled. On that day, our family truly was ‘Team Brooke.’
Which got us to thinking. How could we show Katie that we were also ‘Team Katie?’ That you don’t have to have special needs to feel special in our family? So we decided that we would celebrate ‘Katie Day.’ A day in the life of our family would be dedicated to Katie alone.
We sat down with our calendars and mapped out the next available Sunday (I’m not going to pretend that it wasn’t a good 6 weeks out .. welcome to our world) and we began to plan what Katie Day would look like. We told her that (within reason) she could choose the events of the day from start to finish. We had to be clear that we retained veto power; this kid doesn’t think small. Had we let her have truly free reign I can guarantee that we would have spent Katie Day at the home of a very famous mouse and a few princesses we all know and love.
We agreed that as ‘Team Katie’ we should all dress in pink that day (even Daddy, Mama!). She planned her own outfit from head to toe in pink. To the earlier point that she doesn’t think small, when I told her she could have anything she wanted for breakfast I assumed she’d ask me to make her one of my not-so-world-famous ‘egg men’. You can imagine my surprise when my little Eloise said, ‘Ooh, anything? OK, I want to go to the Four Seasons for breakfast.’ Mercy!
After some tinkering, the day evolved into a true Festival O’ Katie. It started with a ‘decorate your own pancake’ breakfast, followed by a trip with Mama to the Hallmark store (to pick out yet another Webkinz .. Ganz, how I curse thee and your enviably brilliant marketing team!), then to the Four Seasons for lunch (by the way, a little Public Service Announcement: if what you order on a whim is not on the menu at the Four Seasons, ask how much it’s going to cost .. turns out my off-board lobster wrap was $40. No, seriously, $40. Yeah, I nearly fell out of my chair), then a trip to Mama’s office (where we logged in the aforementioned Webkinz) and then home to switch off to Daddy for dinner at Chuck E Cheese. By the way, in case you’re thinking it, I swear I did not (knowingly er, um consciously, er, hmm, well, purposefully) orchestrate Mama getting the Four Seasons and Daddy choking down frozen pizza and playing whack-a-mole at a place named after a giant mouse. And if you talk to Luau, please help me try to convince him? I’d do it for you. Anyway ..
It was a wonderful day and we’ll do it again sometime this year because it’s so incredibly important to us to spend that extra time and do these kinds of fun things for Katie. We used to worry that Brooke was missing out on many of the great things that we were doing with Katie in our effort to create extra time for her. We knew full well that many of the events were things that would be very difficult (understatement alert!) for Brooke anyway, but it’s our job to agonize over these things, right? Right.
Katie has had some amazing experiences in her short life. I’m both proud and gratified that our hard work has provided her with so many great opportunities to see and do things we never dreamed of as children her age. She has been to some great restaurants ‘the best are the ones that are so fancy, Mama, that you can’t understand a thing the waiters say’. She’s been to Broadway plays (Mary Poppins! Annie! The Lion King! Twice! – OK, don’t ask – Oh, and while you’re convincing Luau that I didn’t really mean to stick him with that whole Chuck E Cheese thing, what do you say we leave this one out of the conversation, shall we? Meaning let’s not remind him that Mama went both times and he STILL has yet to see the Lion King, ever – great, thanks – She’s been to the ballet, Fenway Park to root for our beloved Sox, NYC for tea at the Palace .. Bottom line, the child has seen and done a lot. I must say, though that the great majority of the time we spend with her is far more low key than all of these things would imply. I swear, it’s not as bad as it sounds. Our best moments are usually on the floor in her room having tea parties or out collecting sticks in the yard or snuggling up on the couch to root for our favorite American Idols .. Oh, come on, you can admit you watch it too! Too much? Maybe. That’s another day’s discussion.
But in the midst of constantly feeling the pressure of ensuring that Katie has enough time with us, something struck me about the whole situation. When I realized that Luau was taking Katie tonight (it’s usually me who takes her on these adventures. Yes, like the Lion King. Twice.) I got very excited about the prospect of my ‘special’ night at home with just Brooke.
We are so focused on making sure that Katie has our time, but what about Brooke? Yes, I do know that I just spent the better part of this post detailing all the time devoted to her. But all of those things I talked about take time FOR her. They are not about spending time WITH her. I guess that’s why I’m so excited about this gift of some free time tonight with no purpose, no event, no agenda, no objective other than enjoying my baby girl.
So, when all is said and done, I guess I’ve just identified yet another challenge – making sure that we have time with Brooke to just BE. That’s Ok; we’re up for it. We just have to find the time.