Friday, April 29, 2011
Most of the time you hear about it when someone's gone for one of those 12 week nuchal translucency screening tests, or a 20 week amnio. Someone casually says they've gone to the doctor and have "ruled out Down syndome."
And it's in the news now and then. Stories about medical risks of a child with Down syndrome, statistics concerning the heart, thyroid, etc. Stories about new ways to find if your baby will have Down syndrome, and the procedures you can do to end such a pregnancy. And if you ask a doctor, they'll tell you about the possible health concerns.
Unless you are personally affected by a person with Down syndrome, this is what you know. The stereotypes, the news stories, the medical issues.
And then there are those of us who have a little child with Down syndrome living in our homes. A daughter or a son weaved into our worlds. A house that is not known by complications and risk factors but instead by the way that our child adds to the amazingness of our lives.
We were pregnant and learned "about Down syndrome." But for the past 4+ years our world has just been "about a girl." A beautiful girl who is just like any other little girl. Her extra chromosome doesn't make her less or different, any more than any child has similarities or differences. Her weakness is math, but you should see her learn complicated choreography that most adults can't conquer. Her speech isn't perfect, but she knows the words to more songs than I do. Some things may be hard for her, but I've never seen a person have a bigger smile on her face as she overcomes life's challenges.
Down syndrome is part of our world. But life, daily life, is about being in the kitchen with a little girl on a stool helping me cook each night for dinner, before hopping down to set the table - she knows exactly what we need - the number of forks, plates, glasses... It's about booking seats 6 rows from the stage on the aisle for Mamma Mia for her birthday, because she will go crazy singing along to the Abba songs (and it'll be the second time she's seen it on Broadway!). It's about using each experience to teach her and learning more from her in the process. It's about witnessing beautiful friendships that I'm kind of jealous of, because people are naturally drawn to my girl. It's about being overscheduled like any other child - swimming, soccer and hip hop dance being part of her normal weekly routine, in addition to preschool, play dates, and going down the tallest slide at the park. It's about braiding and styling her hair, while bribing her with gummy vitamins so she'll sit for a little bit, and then having her run to a mirror to tell me she's "pretty." It's about the "hug and kiss" that she demands from her parents, and the way she's so self-sufficient for a little girl, and that she was kind of happy to watch part of the royal wedding on tv - especially the little flower girls - and how she asked if she can be a princess too. I told her, of course you can.
My hope is that one day, Down syndrome is more associated with the people we've gotten to know that have this extra chromosome - who they are, what they do, how they're normal valued members of society - and not the medical conditions they might have or the learning disabilities. Personally, I get migraine headaches, had Lasik surgery to fix my poor eyesight, and had an ulcer in law school, but would hate for that to be all that the world knows about me.
Lilly is just a little girl and is genuinely the best daughter a mommy could ask for. She's fulfilled all of my dreams of what my child would be like, DS or not.
Thursday, April 28, 2011
We were on Spring Break. And although it seems like we're always going or planning a vacation, this time we just flew down to Atlanta to see family.
Lilly had a blast with her cousins, as always. And her favorite thing to do was jump on the trampoline at my parents' house. She had a great week (10 days, actually - NYC gives a long break!) and we both came back exhausted. And I really enjoyed spending time with our parents, especially a lot of quality time with my mom, and also got to see my friends a few times for dinner, and got to shop a little as well! (Nothing too crazy, my most-frequent store was Target.)
Lilly got in the habit on our trip of taking a nap, which she usually only does on "vacation" like when we're at Disney World but it's so nice because then she can stay up late and hang out with the older kids and grown ups. She didn't miss a Dancing with the Stars or American Idol episode all week. And, I'd like to pick up the routine when we get to Europe this summer because it sure would be nice for Lilly to be well-rested and able to stay up late on our cruise. The funny thing is, though, that some nights Lilly was up until midnight and got into the habit of sleeping until 9 am for a few days - funny for a little girl who usually wakes up at 7 like she has an internal clock.
Oh, and... we got a house. To rent, of course, the DC area is super expensive. Jon was in DC for the past 3 days doing preliminary work stuff, and while he was there he looked at 5 houses that we had narrowed down. They were all ok, and suddenly a new listing popped up Monday night and he was able to see it Tuesday morning and loved it and we put in an offer and now it's ours, from July 1 for a year, possibly two.
It's in Bethesda, but near the South part of Kensington, so the location is great - it's less than 3 miles to Lilly's school and less than 10 miles to Jon's work in DC. It doesn't have the 2 car garage that we want, but the backyard is really nice and fenced in and I can't wait for Lilly to start playing back there (especially after a year in New Zealand and NY, both without backyards). It's from 1950, but the kitchen is remodeled and gorgeous - I am so looking forward to cooking with Lilly in it, and the bathrooms are updated. I've only seen pictures, so trusting Jon picked out a good one - but the realtor loved it as well for us. So, we're not only excited about the house but happy to get this checked off our list. Now, we have a free weekend in May (our original weekend that we had planned to go down there) that we can possibly go out to Montauk instead. :)
But for now, we're settled back in our NYC apartment. We got back last night and Lilly sleepily ate mac n cheese before crashing hard (aka sleeping) and I vegged on the couch to catch up on all my guilty pleasure tv shows that I've missed for the past week. Today I'll worry about unpacking and groceries.
Friday, April 15, 2011
Thursday, April 14, 2011
Except this week is totally nuts. The job I'm assigned to is pretty much an "everything was due yesterday" kind of thing, and Jon's been busier at work than ever. I stayed up late last night working (and I hadn't missed those kinds of days at all) while simultaneously folding laundry. Lilly woke up 3 times last night, with a slight fever and a cough. Oh and did I mention, today is her IEP meeting, for which they have provided no paperwork, evaluations, anything?
So now Lilly's sleeping in, I'm hoping she's feeling better so I can send her to school, I have the IEP meeting at 8:45, her lunch is not yet made, I'm working all day after that...
And meanwhile Jon and I are multi-tasking at the not as important but kind of urgent "we need to rent a car immediately for weekends in May and June" plan because already Memorial Day is sold out in NYC, and we need to rent one to go down to DC to rent a house, and hopefully Montauk at some point.
So, that's our day. Gotta go pour my coffee and get dressed and make Lu's lunch... we'll see how the day pans out from here.
Wednesday, April 13, 2011
Lilly and her alphabet...
Lilly's dance class - I'm taping it through a window so you can't hear the actual music, but it's just a little taste of Lilly's hip hop class. (FYI the person talking in the video is a stranger standing nea me looking at her own kid, it's not me.)
Lilly and her cousins (and a friend) doing patty cake.
And in unrelated news... Lilly is no longer a little girl - she no longer has a side rail on her bed, because she's a big girl who knows not to roll out of bed anymore. We took it off when her grandparents stayed over last weekend, and when they left we didn't put it back on and she's done great! My sweet little big girl!
Monday, April 11, 2011
But does she realize that when we get on an airplane, we travel really far away? Does she have a concept of where we are, and where we're going? We started by going to our neighborhood toy shop, where we found globes for $99. While apparently the price is justified by the fact that the globe is electronic and talks, it definitely not the kind of investment we were looking for.
Instead, I found a large folding map at Barnes and Noble for $10 and hung it on the wall. I wondered if this was going to be one of those moments where I'm excited to show Lilly something new and she totally doesn't care (like the portable electronic game system I bought her for Christmas that she hasn't picked up since), or if it'll be one of those magical moments that we'll remember forever.
It turned out to be a great experience. Lilly totally understood different places on the map, and how we take airplanes to get there. She quickly identified that we live in New York City, that Grandma and the rest of the extended family live in Atlanta, that she used to live in New Zealand and Virginia, that we're going to Barcelona to play, and Naples to eat pizza and will celebrate Mommy's birthday in Corsica. We went over everything and she remembered the second time where each place was and could easily point them out all by herself.
And then I asked her, if she could go anywhere in the world, where would it be. She looked at the whole map, and pointed to Spain. Good girl, we said, we'll be there in 3 months. And then we asked her what's one other place she'd like to visit... and of course our little traveling girl put her magic wand on South Africa. And Jon immediately offered to take his little girl on a safari there when she's a little older. (It's funny because he's always said he wanted to do that with Lilly, and so it's ironic that Lilly randomly chose it!)
We'll be keeping the map on the wall for awhile, so Lilly can continue to map our her future.
Saturday, April 9, 2011
Lilly's bedtime is pretty normal every day - but today, as Lilly was sitting in bed with a book, waiting for me at 8 pm, she seemed like she almost didn't want to go to bed. And I could have easily said: "Ok let's read our book" and gotten her to sleep in 10 minutes, I instead looked in her eyes and said "You want an adventure?"
This is when Lilly thrives. When mommy makes her an unexpected offer, when she gets to do something different - she is such a willing participant.
So I told her to put on her rain boots (because they were the most convenient) and I ran for my flip flops. And instead of drifting off to sleep, Miss Lilly Lou got to walk with mommy down the hallway of our highrise apartment building after bedtime to go put laundry in the dryer and start another load in the washer. We gathered everything we needed, and Lilly excitedly got to carry an empty milk carton to the recycling bin located on the way.
Lilly happily took every single item out of the washing machine and put it in the dryer. Then, without instruction, loaded the washing machine with the next load. She put in the laundry card ($2.50 per machine - ugh) and pushed the right buttons.
Not that I don't purely appreciate my big helper, but more than that - I am so proud of how she knows what to do, and is so happy to complete a task. She is 4 years old and is so capable. And so happy to do it all on her own.
So I raised the bar. When she was done, I told her "Go give the laundry card back to daddy. See you later, bye!" And she gladly took the card and went by herself, out two doors, down a long hallway with a couple turns, to our door down at the end, then turned the knob and went inside. (I watched the whole time, but had to be sneaky so she wouldn't catch me.) Again, proud that even though it's not super complicated, she didn't get distracted by the elevator buttons (and sneak downstairs!) or go into the wrong apartment.
And when we got inside, daddy was stretching to get ready for a nighttime run. And Miss Lilly and I sat down next to him and did all the same stretches. Then I came up with a couple more. Lilly performed them all perfectly. Finally, we were done. And before we all got up, Lilly said: "Butterfly" and put us through her version of the stretching exercises, remembering each one we did and doing them better than we had originally shown her. What a funny monkey.
We ended up going to bed an hour later than we planned; but what a fun last hour of the day. So much laughing and smiling and appreciating; I didn't want the day to end.
She finally said her goodnight prayer and we read our book and we sang "you are my sunshine" together, laughing the whole time, and she easily fell asleep.
Remind me to have more of these moments...
Wednesday, April 6, 2011
Lilly having Down syndrome doesn't limit her, or us. Sure, we occasionally talk about IEP's, evaluations, and goals. We encourage her to do her best; but we'd do that regardless.
But the difference we've found in raising a daughter with quote "special needs" (the quotes are because, honestly, her needs don't feel so totally special to me) - is that she's encouraged us to have a "sieze the day" attitude. To not take anything for granted, and to welcome every opportunity and possibility. To not put off until tomorrow what we could do today.
"If not now, when?"
Life is fragile. Life is precious. Life is meaningful, and I guess we always knew that, but I just want to show Lilly everything, teach her everything, experience everything with her. Give her every opportunity to go swimming and dance and travel and explore. She's growing up so quickly, and what's the point of not appreciating every moment?
If we sat back and said we'd do things later, we'd miss out - she'd miss out. If we said "Broadway is really for a kid a little older; maybe when she's 8 or 9" then she'd never go nuts singing along to her favorite Abba songs in Mamma Mia, or talk nonstop about the time we all saw Mary Poppins, or the impression that Lion King made in her heart - she still talks about it daily. If we waited until Lilly was 10 to go to Disney World, we wouldn't see the magic in her eyes as she so gives Cinderella or Princess Tiana the biggest hug ever. Sure, it's justifying all our experiences, but how cool is it to remember the way Lilly was overboard excited on a helicopter ride around the Bay of Islands in New Zealand?
These memories are so precious.
So Jon and I booked our Disney Cruise this July with the expression: "If not now, when?" Sure, we can put it off a few years until Lilly understands what the Roman Colosseum is, or is really ready to endure intense European travel. Or, we can go now when the timing makes sense, knowing Lilly loves each experience that life gives her, knowing it will warm our hearts to see her immersed in the Mediterranean cultures that we visit along the way, packaged within a fun kid-friendly Disney cruise.
And it's a good thing we jumped on board - because today Disney announced that next year they won't be heading to Europe (instead it's going from NY to the Bahamas, and since we're living in NYC, and have been to the Bahamas, and seriously, they can't even compare with Barcelona and Corsica and Malta and Villefranche...).
So the opportunity to put off this adventure by a year doesn't even exist - and perhaps Disney will go back to Europe eventually, but I am so glad Lilly's passion for life has convinced us to have the adventure of a lifetime - even though Lilly will only be 5 at the time.
Tuesday, April 5, 2011
We have booked the flights and transfers directly through Disney so that part should be hassle free (hopefully!). We'll fly out of Baltimore (two weeks after moving to DC) and arrive in Barcelona the next morning. We'll get used to local time, by probably trying to stay up all day - or napping if we need to - really, that day can just be spent doing whatever we want, no real plans. We'd like to go to the marketplace, eat some tapas, and our hotel is right near the beach and also has a pool.
We can spend the morning however we want, and then get on the Magic in the early afternoon.
At-sea day, which will probably involve the pool, relaxing, and some princess time for Miss Lilly.
Malta! One of my strategies for the cruise is to only do port-intensive touring on every other day. Because the next day I want to do a full-day excursion, on Malta day the one goal I have is seeing the Blue Grotto, which we'll probably get to by taxi. Otherwise, we can explore the town near the port.
Sicily! We dock in Palermo, but the excursions I'm thinking about are an hour or two away. I can't decide, this is the one place where there are so many Lilly-friendly fun options for us all! One excursion involves a day at an authentic farm, making fresh cheese and bread, hanging out with the animals, and having a super fresh meal. Going to the Sicilian countryside just sounds like a once-in-a-lifetime. Another excursion involves a long boatride to a remote beach surrounded by caves and mountains, where we'll hang out for awhile before an included lunch at a nearby restaurant. And finally there's the excursion where we go to a village that's 1000 years old (or something) followed by a few hours at a beach, a nice lunch, and ends with a visit to a local winery. Seriously, how can I choose? (And how can I go wrong?)
Naples! All I can say, is pizza. It's a more low-key relaxing day, so we can do as much or as little as we want, depending on how we feel. We can also take a boat to Capri or Sorrento, if we feel up to it; but the main goal is to eat the authentic pizza of Eat Pray Love. The cruise was booked based on eating this pizza.
Rome! We're still undecided on how we're touring Rome, but it's the only day besides Sicily where I definitely want to do an all-day tour. We can get a private tour/driver which is about as expensive as doing a nicer cruise excursion, but would give us the flexibility of doing whatever we want - if Lilly gets bored at one point, we can go to a playground or go get a gelato; no set plan. Disney also has some great excursions, the one we like the most goes to the Vatican, Colosseum, Trevi Fountain, Villa Borghese park, a nice lunch... whatever we do, it'll be a great but super exhausting day.
La Spezia! We don't have any definite plans this day. We can take a boat on our own to the Cinque Terre towns nearby, or we can do a half day morning excursion to a castle in Lerici, where there's a kid-friendly dinosaur museum and apparently a great beach. We're skipping Pisa and Florence, as they're further away and in my opinion, low-yield for Lilly especially after an exhausting Rome day.
Corsica! And a certain someone's 30th birthday!!! But my birthday wish will be doing something relaxing - there are great beaches nearby, so that's where we'll be.
Villefranche! Thanks to great advice, I think we'll take the inexpensive bus to tour Monaco on our own, and maybe otherwise stay close to town.
Last sea day. Packing and being sad that our vacation will almost be over!
Depart the Disney Magic and hop on a flight (or two) back to Maryland. Because Jon starts work August 1!
So there is the rough draft of our trip... The goal for each city (except Sicily and Rome) is to explore all morning and then relax in the afternoon - especially trying to convince Miss Lilly to nap (she doesn't in everyday life but when we're on vacation she does, and I think the time difference and the dark inside stateroom will induce sleep). That way, we'll pace ourselves with energy throughout the trip, and also Lilly can stay up and be happy for dinner and the nighttime shows.
I can't wait!
Friday, April 1, 2011
I was doing the Wii Active: More Workouts 6 week plan, and loved it. I was 5 weeks in, and had just 4 workouts left to complete it. Except Wii disagreed.
Wii said I had 5 workouts left. You see, this week I worked out on Monday Tuesday and Wednesday instead of Monday Tuesday and Thursday. So today, when I signed in to do my workout, it didn't register that I had done Thursday's workout on Wednesday, and wanted me to repeat the same workout today without credit.
So we got in a fight and broke up.
But, it inspired me to get back together with my old love, running. 20 minutes on the treadmill made me feel so good!