Friday, May 3, 2013


I've gotten into the habit of not blogging.  Not that I don't want to share my thoughts; I am constantly thinking a hundred things I'd love to tell the world about my amazing kids, our adventures, our family.  Especially Lilly, who accomplishes so many great things every day and who is becoming such a lovely beautiful intelligent young lady (at the age of almost 7), or sweet just-turned-one Ben, who is doing new and funny things every day.  I want to capture these memories, and then for some reason, I don't follow through on doing it.

I get nervous, sometimes.  Jon's very similar to me in this aspect, but I always feel like I'm jinxing things.  If I tell you Ben is such a good sleeper, all of a sudden he'll be up all night.  Or if I share how incredible Lilly's doing in school, she'll pull a fast one and sneak out of class the next day.  True stories.  In some ways I always feel like the kids are always doing great, but if I say it out loud, if I share it on facebook, if I blog about it, if I brag just a little bit... I feel like it might be taken away, or turn into opposite day.  So instead I feel incredibly blessed in the privacy of my own head. 

But to be honest, the kids really are doing great.  Lilly is so smart.  She is reading, she is doing math, she is writing notes to her friends and putting them in their cubby's at school.  She has great friends, and she is a great friend - we are still enjoying lots of playdates and birthday parties.  She walks into school, and tons of kids - ones I don't even recognize, from pre-K through 8th grade, come up to her "Hi Lilly!" "What's up Lilly?"  We ran a 1 mile race last week for her school's annual Lion's Roar, and I'm not even kidding that 12 year old boys - who looked fairly grown up and tough - were cheering her on by name.  She is a very lucky girl, to be in an environment that is so caring and enthusiastic.  I give a huge amount of credit to the teachers and administration for doing the apparently atypical thing of treating Lilly like she is just like any other child.  Which is what we've always done, but they don't want her to be seen as being different - she is a child created by God just like any other, and their positive attitude affects the other kids and parents in the school.  And it also strongly affects Lilly: if the teachers teach a lesson to the class and truly involve Lilly as much as every other child in the class, and hold their expectations to the same level, then Lilly will think she can do everything they give to her, and that's why she is having such a good year.  But now I'm a little bit rambling; but I do think it's amazing how well she's doing - academically, socially, spiritually (she knows all her prayers) - and it's because of who she is, but also because we've never given her limits.  She has no idea she might not be able to accomplish something; so instead she gives it 10 times more effort until she does accomplish it. 

And Ben is doing great as well.  We celebrated his 1 year old birthday a couple weeks ago on April 16th, and also celebrated it a week before in Atlanta at a family birthday party, and in Bethesda a week after with all our friends here.  He is a lucky boy!  His favorite person in the world is Elmo, so we had lots of Elmo decorations including an Elmo cake.  He is confident and curious, and thank goodness he is not one of those early walkers - he can hold our hands and toddle around but is not ready for total independence yet.  He loves his sister more than anyone (except Elmo), and many mornings at 6:30 it's not unusual to see Lilly in his crib with him after he wakes up, and the two of them sing and hug and have special moments for a half hour or so, until I interrupt it to get the day going.  He has lots of teeth and gives a funny grin when you say "Show me your teeth!"  He's also good at "How big is the baby - so big!" and has just started to point at things.  Whenever he sees a duck he says "da da" or "ba ba" - he is trying to say "quack quack" but is so serious about it. 

We are moving in a few weeks to a house we are buying a few miles away, and it will be great to own a house again.  There are some projects to undertake in the next couple years in it, but it's exciting (although it will be tiring to pack and move!).  Lilly's picked out the biggest room for herself, and the smallest room for Ben.  We'll also have a guest room for visitors...

The summer is already getting full.  We are going to Disney World for Lilly's birthday week (Polynesian concierge!), and taking the auto train down to Orlando for that trip.  Then we drive to Atlanta for 3 weeks of summer camp, while Jon works back here in DC, and then Lilly has a few weeks of camp at her school.  And still trying to figure out if we can plan a week at the beach in August...

So that's all for now.  Will get some birthday pics of Ben up on here in the next few days.

Monday, March 4, 2013

First look.

I think it's safe to say that everything I originally thought prior to Lilly's birth is wrong.  I was small minded, short sighted, and naive - about Down syndrome, about kids generally, about life.  Thank God Lilly changed everything.

I hate the initial information given to new or potential parents of a child with Down syndrome.  Genetic counselors, ob's, random friends and family share so many things that are confusing, broad, wrong, outdated, and so many other not-so-helpful things.  There were a few things that stand out to me regarding the first time we heard the words Down syndrome when I was 13 weeks pregnant.  First, the ob said that she would probably have a heart defect (based on the potential DS diagnosis, not based on anything he saw in the scan), and encouraged us have more tests to basically abort if it was positive for DS  (and yes I think that was all in his same sentence).  And someone said she'd need glasses.  I worried that she would not be independent and wouldn't be able to do things on her own, but - I swear this was one of my initial thoughts - she would be a great traveler so - in my slightly shocked random though, I remember thinking if she can't work and can't live independently, at least she and I can travel the world together someday.  I remember wondering if she wouldn't be able to learn - especially learning to read.  And that she wouldn't have friends, people wouldn't give her a chance, and it might be lonely for her, and for our family.

Breaking down this list: Lilly did have a small heart defect, but it wasn't a big deal and was fixed in an hour long catheterization procedure.  I am so thankful we did not do further testing and amazingly grateful we never considered the option of abortion - but our first doctor was correct when he used the word "positive" and "Down syndrome" in the same sentence, although that's not exactly what he meant.  Again - thank God Lilly is exactly who she is.  And oddly, she is the only person in our family with perfect vision.

As far as independence, I am shocked at how much street smarts Lilly has.  She can figure anything out - literally, anything.  I can't say for certain if Lilly will be living on her own as an adult with no help whatsoever, but to be honest I could almost see her doing it as she is now, at age 6.  The girl knows her routine, knows where everything is, knows what is right and wrong, knows money and transportation, knows social skills and how to get what she wants and needs.  She especially knows how to take care of her brother, and I wouldn't be surprised if it's her taking care of Ben someday, and not the other way around.

And I must have seen into our future, that first day that we heard the word Down syndrome, because Lilly won't just be a great traveler as a grown up - she is the best child traveler that we've ever met.  She loves hotels, handles long international flights like a pro, easily gets her way through airports - checking in, security, that last minute bagel on the way to a flight, and appreciates the heck out of every cultural and social experience.

And learning.  I am so inspired as I watch her work much harder than her peers need to, to learn the same material - but she makes it look effortless and is keeping up so well with her class.  Which means: she is reading.  She is writing.  She is counting, and counting by 5's and 10's, and telling me about presidents and religion and life.  I always thought that reading was so important because it would give her freedom, and the fact that she is so enthusiastic and learning to read so well just makes me so proud of this little girl.

And friends?  Ha.  Lilly makes and keeps friends so much easier than the rest of us.  She is social, likeable, sweet, and funny.  It warms my heart to hear everyone at school love her, and the playdate invites are nonstop.  Every week I'm not even over exaggerating, she averages probably 3 playdates with different people.   Girls, boys, kids in her class, kids in other classes, kids in different grades, everyone wants to hang out with Lilly.  And the friends she makes often makes us friends in the parents of her friends, so it has definitely been the opposite of a lonely isolated experience.  (And this isn't even talking about the amazing community of families we've met that have children with DS or other special needs.)

Are things always easy?  No, but I wouldn't relate that to Down syndrome necessarily - I think being a parent generally is harder than I every pictured it to be - especially the pressure of doing it all and having it all.  I am both working and staying at home.  I need to volunteer for everything, cook healthy meals, keep the house clean, be responsible for my work which often has tight last minute deadlines, and teach the kids everything they need to be responsible, happy, health, well mannered and well behaved little kids.  And sometimes, they have an off day, or sometimes I do.  And Jon does help so much, but he's still the primary work-outside-the-house person, and works crazy hours.  Things are busy, crazy, but they're so worth it, and I wouldn't change anything about either child: Lilly's extra chromosome and Ben's extra sensitivity.  We're all exactly who we're supposed to be.  I just wish that - in the initial glimpse of information regarding Down syndrome showed a more clear picture of how beautiful our lives are.

Wednesday, February 13, 2013


Every year - for the past few years - I've given up Facebook for Lent.  There is something actually really nice, in my opinion, about stepping back, unplugging, disconnecting, and no longer knowing every little detail of everyone's life that they are sharing on there.  That being said, I love normally knowing these things: but the absence of it gives me time to reflect on my own life, time with the kids, time to spend with God, and just silence from the constant noise and feedback in my head that Facebook normally provides.

Last year, as I still updated my blog every so often during Lent, a few people criticized: you should give up everything - not just Facebook.  Or implying that I was selfish because I was still "plugged in" to this and not that. 

To me, Facebook is instant gratification, it is going on whenever you want, seeing everything everyone is posting, saying anything you want to get a response to, showing your own life - the good and the bad (which usually you get immediate support and feedback).  A blog is different - to me.  I'm not a professional or even quasi-decent blogger.  It started to record our year in New Zealand for myself primarily and our friends back home in the US.  And it continued, mostly, for me to memorialize Lilly's World for myself - to remember what it felt like when she started walking, to remember how happy she was at a birthday party, even to know my thoughts on this or that.  And Ben came along, and as much as I want to record those things for him as well, the busy-ness of life overcame us, so it's only been occasional for the past 9 months.  (Thankfully I missed Lilly's first 2 years - as far as blogging goes- as I started the blog right around her second birthday - so really I'm not so behind with Ben.)

So what I'm saying is, a blog isn't the showy immediate response Facebook world.  I don't have many readers, people rarely comment, it's more to remember Lilly and Ben and our life.  So that's my justification - as if I need a justification for what I give up for Lent.  Shouldn't that be my business, and God's?  And by the way, I'm giving up sweets and also want to write down each day the things I am grateful for and thank God for this long list of blessings He has given me.