WALKING!!

We are beyond excited.  Every day, you walk a few more steps; on Friday, you walked 8 steps total.  Well, today, you walked five in a row.  This is sooo huge for us.  We have been doing treadmill training with you for about 6 months now, and I'll have to videotape it for here.  But here it is: the videotape of you taking your very first steps:

And just in case any of you want to read about treadmill training and its benefits--if you're not convinced by our 20 month old practically walking!!--see this article.
I want to definitely write about the Buddy Walk, but I'll save that for tomorrow.  This is so huge that we all just want to savor it.  Love you!  Mom

Ellieotte Carol Burch, my BFF

   This is from forever ago, and Elliotte is a big girl now- I'll have to find an updated picture!!

Please Comment!

Dear Jules,
When you read this--when you're older and interested in such things--I really hope that I can also share with you comments from your family and friends.  So if you're reading this blog, please please take a minute to comment!
I will be posting soon, as the Buddy Walk is this upcoming Sunday!!  We will be going, fo' sure, and Grammy and Papa are coming down from Charlotte for the day.  I'm also trying to get some more of our friends to come out.  And you'll be meeting Trent, someone I've only met online but whose mother, Elizabeth, has become my facebook friend.  Trent is only a few months younger than you and also has DS...and looks like such a cutie.  I absolutely cannot wait, and I know I'll have more pictures to share.
In honor of DS awareness month, I'm trying to post every day (ha!).  Well, as often as I can.  And so here's another cute picture of you, hamming it up as always:

Crawling! Fast!

Once again, it has been an inordinately long time since I have blogged.  We went to Hungary and had a really nice trip; instead of doing marshmallows over a blazing fire, Hungarians like to cook bacon, drip the fat on bread covered in onions, and eat it.  So here's a picture of you participating in this activity.  I must say that you really enjoyed the fire!  Here you are with Daddy, Laci Bacsi, Zsuzsa Neni, and Nagyi:

When you were in Hungary, you were still figuring out how to pull up.  Soon after we returned, though, I called ECDC, the College's pre-school, and learned that it would be at least two years until you got in there.  Even though I would highly recommend Loving and Learning, where you were at the time, they wouldn't move you up unless you were walking AND drinking from a sippy cup, and you ended up in there with 6-week-olds. 

After much consternation and many interviews, we ended up deciding between two really good, but really different schools.  It might help others to know why we made the decision we did, so here it is.  Trinity Montessori is an excellent school, we loved the teachers, and they were the only traditional pre-school really excited about having you as a student.  Most of the schools I called were very excited about having us as customers until I mentioned that you had Down Syndrome, at which point it became "oh...I guess we can handle that."  This didn't overwhelm me with confidence, but the people at Trinity were so different, so invested from the start.  Your friend Maybelle went there for a year (see Maybelle's mom's blog:  piepmeier.blogspot.com).  I even talked to this woman, my colleague, about her decision, and she told me she was a big proponent of inclusivity, the school worked really well for Maybelle, and that she was walking within two weeks.  

But we did not end up picking Trinity, and therein lies the story.  While I'm also a huge proponent of inclusive education and fully expect that you will go to local, non-special-needs schools, I also thought a lot about you and your personality.  You (at least at this point in your life) are a bit shy, reserved, and not willing to "get in there" and take what you need.  I was worried that the de-centralized Montessori method would not allow you to have your turn, as it were: that the other students would get ahead of you and leave you out of the game.  I also know that you thrive on structure; who else gets up at 7:30 every morning, even in Hungarian time?  So we ended up at the Charles Webb Center: http://www.dsncc.com/Charles%20Webb%20Center.html.  I really agonized about this, but a woman on the babycenter.com board finally said what I needed to hear: that I needed to do what was best for my child.  It has been an amazing experience for Jules; they work with her on standing and on walking every day, and I've watched my daughter become more and more mobile before my eyes.  Here, if I can get it on, is a video of her going after our Cardigan Corgi, Puck:

If that link doesn't work, check out:

https://www.dropbox.com/s/liway9dygvfq8jl/2012-08-28%2004.44.22.mov

Catching Up

Today I'm in the process of catching up on many things:  my laundry, my yard, this blog...if you should ever become a teacher, Jules, remember that it's all-consuming and takes over your life.  Kind-of like parenthood, I guess, except that at least we have daycare for you!  Maybe we need daycare for college students...

The last time I posted was November 20th, and the post didn't even make it up on here, so that's a lot to catch up on.  Let's see if I can try.  By November, you were sitting up, fully, and very proud of it.  In fact, still, every time you get up on your hands and knees, you revert petulantly into a sitting position.

This is one of our favorite pictures of you, with Daddy, at the Thanksgiving Day parade.  By this time, you didn't even really have to hold on, but his hair is irresistable!  I love that you're looking one way, dad is looking the other, and there's a "one way" sign in the background.  Sad to say, that was the highlight of that particular parade.  Thanksgiving itself was a bit different this year; we went to one of Grammy and Papa's neighbors' houses, so it was definitely more rowdy.  Nice, though.  Everyone loved you, of course.

Christmas was lovely: your very first!!  I did take lots of pictures but haven't put them up here, so here's just one:

It's my favorite, of you and Daddy putting the star up on top of the tree.  With the help of Miss Beth, your OT, you had started grasping for more things and were able to hold it, but with help.  Now you could fling it across the room (but that will come later!).

In January, we celebrated your first birthday!  Look at you sitting up so perfectly!  You always did have the best posture--in fact, you generally don't do anything until you can do it well, a fact about which I'm both proud and worried.  You know what?  Don't worry so much about being perfect.  The truth is, NO ONE IS.  We are all flawed, we all fail, but the true definition of courage is the ability to get up and try again.  And don't let anyone tell you differently.

So what did we do in February?  Let's see.  You were sick for most of it, unfortunately, but here's a sweet picture of that perfect sitting up I was talking about!! In March, you had your adenoids out and tubes put into your ears.  A routine surgery, but I was still nervous about the anesthesia.  You got through it like a champ, though, and rocked those hospital blues, as Grammy would say:

We spent March getting over the surgery, and then you had a sinus infection.  After that, you were still congested, so they finally prescribed you Flonase, twice a day.  This might seem extreme--the pharmacist was particularly judgmental about it--but it has helped so very much.  So in April, you were able to celebrate Easter in style:

Grammy came to spend Easter with us, so I'm actually in the picture.  Here's a picture of you and her:

And look at you eating your solid foods!!  I can't believe how much you've grown since October.  Last but definitely not least, you've been playing at crawling, but your real goal is to pull up and walk.  I have this great picture of you in our papasan, trying to crawl.  Look at it and compare it to the picture of you when you were two weeks old, lost in that big chair:

It's pretty amazing how you've grown, changed, and just blossomed.  Mama is so proud of you, Jules.  Now that I'm almost done grading (well, that's an overstatement, but it WILL happen), I can post more over the summer, when you go and meet your family in Hungary for the first time.  DS awareness in Hungary, here we come!!

Ten Things I learned...

**This is from earlier, in November, and it never got posted.

From my 11-month-old (today!!).

1. Never, ever give up. Things might take longer, they might be more difficult than you thought they would, but they will, with time and effort, happen. If one wants to suck one's toes, one eventually will.

2. If you're open to giving love, you'll get love back. I've never met a person who didn't love Julia.

3. Embrace the joy of life. Joy and wonder are two of the elements that characterize both childhood and the holiday season. How sad that, as we get older, we trudge through life and often lose both.

4. Be yourself. That is what makes you so radiant and compelling. Trying to be anyone else is futile.

5. It's not always loud people who win out. Julia is probably the most quiet child in daycare, and/but everyone just adores her.

6. Practice foregiveness and grace. We hold on to so many things as adults: things that keep us from relationships, from spiritual freedom, from living the life we were meant to live. If I bonk Jules on the head by mistake, she knows I didn't mean to and lets it go.

7. Family is important. Often, we forget how much our parents did for us until we ourselves have a little one. It makes me grateful for all of the gifts I've been given, and I hope my family (both immediate and by marriage) knows how much I treasure them.

8. It is okay to be "slow." It just means you're taking the time to do things right.

9. People are less judgemental than I thought. Every day, people surprise me, not just with their kindness, but also with their acceptance. Often, I learn that it is I who was being judgemental of them.

10. Take a leap. I was so scared when we decided to have a child, and even more scared when I found out that our child is "different." But that Nike slogan holds true: "just do it." I've learned that most of our fears, our anxieties, our feelings of inadequacy, go away when we take a leap, whether it be in career, in marriage or, in this case, in choosing to have a family. There is no wrong path, and we learn invaluable lessons from every path we choose.

That's all for today, but I'll be posting soon about Julia's very first Christmas and, then, about her first birthday! How time flies.

Propping!!

I am so proud of Julia. After some physical therapy and exercising, she has mastered the art of propping herself up!! Still not for a long time, but it's coming, and her arms are getting stronger and stronger.

I'm starting to understand what people mean by how very gratifying it is when a child with DS gets something. It takes longer, and it might not even be such a big deal for parents whose kids are already crawling, but it is absolutely amazing. I don't think I could be any prouder of my strong, resilient little girl. She works so very hard, and she's been progressing in leaps and bounds. Next thing you know, I'll have video of her crawling!!!