Knoebels!

Lili and Daddy took a trip to Knoebels on Wednesday to meet up with cousin Henry and his posse. Mommy had to stay home to fight off a nasty bug, so a return trip is definitely on the agenda. Lili had a roller coaster of a time - we kicked the trip off with a meltdown (the kiddie ride with the flamingos and fire trucks was apparently not cool).
Things started to calm down, we found some grub, peace and normalcy appeared to be returning to Lili-land...

Then a REALLY LOUD (kid's?) band started playing right next to our little oasis of fries and avacado. So we thought we would try a calmer ride - maybe a pleasant jaunt through the woods on a little train...Lili loves trains, right? ... right??...

Luckily, Pappy saved the day by spotting a quiet gift shop where everyone regained some composure and had plenty of stuffed animals to talk to. The turning point of the trip then took place, as Lili spotted a little playground ball in the gift shop. This little rubber ball proved to be the entertainment hit of the night for our little heroine. She had a fabulous time the rest of the evening playing with Grammy and Pappy and anyone walking by. Daddy even got to check out some of the big kid rides (the Phoenix is a great wooden coaster - always ranks as one of the top ten in the country).
Darkness fell, and Lilienna crunched her pretzels into the night and slept the whole way home. Good times.

Thanks again to Aunt Carrie for the photos...

CCDSS website

The website for the Centre County Down Syndrome Society is gradually coming together - it's to a point where I'm going to start sending people there to check it out... :)
Stop by and let us know what you think! I know I would have been thrilled to find something like it two years ago...

Chuckin' rocks

To quote cousin Henry - "Did you see the size of that splash?!?"
She would applaud herself for most of the good splashes. This one got a standing ovation from Daddy.

Fun times at the creek - Lili loves throwin' stuff. She's got quite an arm, so throwing rocks in the creek is about as constructive as it gets. Her glasses flying across the living room, on the other hand...

Expectations

I have big plans for Lili. Not really plans, exactly - I envision wonderful opportunities and experiences for her. Don't worry, we won't be forcing her to do things she doesn't enjoy. But, I truly believe that I will not deny her any opportunity to try something if she wants to. Society comes up with a lot of "well, kids with Down Syndrome won't do such and such" or even better "Downs people aren't very good at this and that" (I'll rant about person first language another time). All the parents I have met have generally agreed that they want the best opportunities for their children, whether they have special needs or not.

But I challenge you all - do we really give our kids every opportunity? Do we hold them back just a little, saying to ourselves 'maybe when she's a little older' or 'well, he's not so good at that kind of thing'? I'll admit, I've been guilty quite a few times. I'm a clingy dad, but if I get up the courage to let her try something new, she usually blows me away with how well she figures it out. And she's 2. I'm a new dad anyway, so I really didn't have any idea how clever 2 year olds were at all. Little did I know she can climb all the way up into the seat of the bench swing and start swinging herself, or tell me all about her day: "sunscreen, outside, swing!, Jesse, play, the sun, hot!, splash, water, brrr!"
I got thinking about all of this while reading a great post called Was I ever wrong on a now-defunct blog by Michael Berube, author of Life As We Know It and fellow Happy Valley resident. These revised expectations are a perfectly natural, healthy way of reacting to the parenting instinct - we primarily want our children to be safe and comfortable. We don't try to underestimate them, we're just trying to be reasonable. That type of thinking is not exactly dangerous, but can lead you down a slippery slope - planning way too far into your child's future, assuming that they won't do this or might not do that. Forget that. I have no idea what Lili will be able to do tomorrow, but I'm not going to tell her what she isn't able to do.

Walgreens Rocks

For anyone who hadn't seen this yet - very cool.

Talking scribble on the remote-phone

This just cracks me up.

"Hello?
- insert deep conversation here -
Bye!!!"

Whoo hoo!!!

Wow! I won my first blogging award!

BStrong at Down Syndrome Life has given me a Blogger Reflection Award:



B was the the first dad blogger I came across. I was just starting to wonder, 'why do moms only do these blog things?' when I landed on his blog. What a great feeling, to see another dad putting his thoughts out there. The best part was, even though the name of his blog is Down Syndrome Life, much of what he writes about is just normal stuff. His beautiful daughter has DS, but it doesn't define who she is. His open letter post is a fabulous resource for anyone who has been in a situation where people just don't know what to say or do.

I'm kinda new to this whole blogging thing (well, at least the whole commenting thing), so I'm still lurking on some of the great blogs out there. I am supposed to pass this award on to five bloggers - luckily I did some research and I don't think I need to come up with purely un-awarded bloggers (don't you wish you knew that, B?) According to the originator of this award,

"this award should make you reflect on five bloggers who have been an encouragement, a source of love, impacted you in some way, and have been a Godly example to you. Five Bloggers who when you reflect on them you get a sense of pride and joy... of knowing them and being blessed by them.
"This award is for the best-of-the-best so consider who you pick, carefully. This award should not be given to just anyone. If you're going to do the award don't just write a few words and slap it on your blog. Write real thoughts about these bloggers and what they've been to you, and if the bloggers you pick have already been given the award, don't be afraid to give to them again. They deserve it as many times as it's given."

Here's what BStrong had to say about me:

Archie at Lilienna one of the few dads who blogs about having a child who happens to have Down Syndrome is starting a support group in his community. He is deserving of this award not only because he is a blogging dad and starting a DS support group, but because his daughter Lilienna wears glasses just like my Amanda and I’m a sucker for that sort of thing.

See dads, all you have to do is make a blog and you get an award!! And buy your kid some glasses. And to be fair, some of our friends in this area are doing a whole lot more work than I am to start our support group.

B, I really appreciate you thinking of me. As you have said, we blogging dads have to stick together!

Now for my five lucky recipients:

Rebecca at Just a little bit of something extra. I began blogging simply to post news and pictures of Lili, as our friends and family are spread all over North America. Not too long ago, she stumbled upon my blog and has introduced me to so many things: the fabulous book Gifts, to which she is a contributor as well as webmaster; the blogosphere in general; and her precious daughter Miss E.

Kim at ramblings of the bearded one. I know, he already has one. But it says you can get more than one, I swear. And, like Kim, I think it's funny in a nice way for him to get an award for being a Godly example. Seriously though, Kim is an incredible father and a great writer. I have fallen over laughing at some of his comments and posts.

Emily Elizabeth at Lovely and Amazing. I know, I know, I'm really copying now. She was one of BStrong's recipients along with me. Her blog is packed with fabulous links and information, and until her template imploded (sniff) she had the coolest three column setup to pack in all of those wonderful sites. She is a great advocate for her daughter Emma Jayne, and her stories and views have helped us and I am sure many others, sidebars or not.

Alice at Words About Words. Alice happened upon Lili's blog right when we all needed a kind word - right before her surgery. She writes about anything, especially her beloved granddaughters. As a fellow night owl, I have spent a few late nights perusing her blog and its subtle beauty.

And to complete the loop, Jeff at Big Dawg Tales. Jeff tagged B, who tagged me. You're it! Jeff is an inspiration to me because he is a tireless advocate for his son. He helped start a group for dads in his community, D.A.D.S. (Dads Appreciating Down Syndrome). And, he likes to talk politics without digging a trench on one side or the other of our oddball two-party system. Don't worry Jeff, no more mushy stuff.

And now, for those of you who aren't getting your third or fourth award:

1. Copy this post.
2. Reflect on five bloggers and write a least a paragraph about each one.
3. Make sure you link this post so others can read it and the rules.
4. Leave your chosen bloggers a comment and let them know they’ve been given the award.
5. Place the award icon on your site

Round 2 is on...

Please vote this round, all scores went back to zero today in the AmEx competition a few posts down - the Awareness Can Build a Family project did very well in round one, and this round is only five days - spread the word!
(Bonus points - see if you can find my rant to a clueless commenter - hehehe)

Cracking herself up

I wish I could talk to the grass and crack up laughing as well as Lili does. I really wish I knew exactly what she is saying that is so. funny!

Calling all AMEX cardholders...

Please check out this competition and cast your vote - the Awareness Can Build a Family project could raise a lot of money with your help - simply with your votes.

Playground fun

Lili's a big fan of swings. That's a bit of an understatement, but I'm not sure how else to put it.










I started this blog mainly to share pictures of Lili and keep family and friends up to date with her life. As we start putting together a local down syndrome support group, I hope some people we may not have met will find this blog and have a glimpse into what our life is like now that she's two. Lili is our pride and joy; she puts a smile on my face many times every single day.





Some things have taken a little longer than they may have with a 'typical' kid; but she's walking, talking, using the potty, etc. etc. To steal a line from Rachel of Signing Time, Lili will do what Lili will do when Lili is ready to do it.









We've been through more medical issues than some families, and less than others. She's had a pretty full life so far for a two year old, I'd say - Lili has been a little glowworm, had surgery for acid reflux, enjoyed birthday parties, been across the country and played in the snow.






There are so many other great blogs out there too - I've got a few great ones in my links section to get you started if you're curious. Careful, they can be addictive. The neatest thing I've noticed in some blogs is a shift in focus away from DS toward everyday life. Down Syndrome is just a tiny part of who Lili is - it was the dominant thing on our minds for her first few days, and has become just another characteristic, like brown hair or a button nose.

Thank you Soeren

Wow. Exactly what we all wanted to say, but didn't quite know how to say it.

This is from a few months ago, but it's new to me. Soeren Palumbo gave this speech to his high school and has since addressed the Illinois Senate. I won't post the transcript, but just this quote: "I hope that someday someone will love you as much as Olivia loves me."
Good stuff.