The State Of Julianna’s World


Labor Day 072 smallIt’s been a while since Julianna’s taken the spotlight. And considering that it’s taken until 8:45 in the morning to work up the post-viral energy to sit down and blog at all, I’m going to take it easy today and just share a few thoughts about the state of Ju-Ju-Bee’s world.

She continues to be a social butterfly, making friends and making herself known wherever she goes. Every time I enter her school I am bowled over by how great the community is. Everyone knows her. I don’t know if that’s the case with everyone who attends school there, or if it’s just her, because she’s distinctive and she doesn’t allow people to ignore her. But she’s definitely got what is often referred to as a “fan club” there.

Generally she’s doing well in the first grade. She did have a non-compliant day last week, which caused her to miss story time so she could finish her work. But so far her reports are actually better than last year’s. She doesn’t “excel” at anything, but we’re very happy to see check marks instead of minus signs.

Shoe thief extraordinaire, enjoying the pool at her grandparents' house. The life jacket made my life a whole lot easier.

Shoe thief extraordinaire, enjoying the pool at her grandparents’ house. The life jacket made my life a whole lot easier.

The hardest thing about raising this chromosomally-gifted child is not even the delays, it’s the difficulty in excavating the school experience. I have absolutely no idea what they do in music class or art class, for instance, and I’m going on faith and watching how she does homework to know what she’s learning–because she can’t communicate those ideas. She’s trying to talk a lot now, and it’s absolutely adorable when she gets on a roll trying to tell us something. She rushes through her sentences and punctuates them with staccato “Um–um–um!”s when her brain outpaces her mouth’s ability to move. When she does this we almost never understand more than a word or two, but often by thoughtful questions we can get to the essence of the matter. Often, but not always. She handles being misunderstood with great grace. She’s getting very good at talking with her hands–sometimes in sign, but often just gesturing to body parts or whatever to clarify what she’s talking about.

For instance: early in August, at her well child visit, we had to go do a blood draw to check her thyroid levels–something that is commonly out of whack in kids with Down syndrome. When we walked into the phlebotomy room, the woman began doing her work, and I looked her up and down and said, “You’re going to need more people.” We ended up with four: me to hold her body (my legs wrapped around hers), one to hold her blood arm, one to hold her other arm, and one to take the blood sample. (Incidentally: thyroid normal. Booyah.)

A week later I had to have a blood draw. Julianna handled it rather well, I thought, but at odd intervals ever since she comes out with something that sounds like “boh-dah.” It took me forever to figure out what she meant, until she tapped the inside of her elbow. And last week, at a family dinner night at her school, one of the staff members said she’s been trying to tell her about this for weeks.

"helping" Grandma make peach pie.

“helping” Grandma make peach pie.

Anyway, the point is that with all of this it’s really hard to know what’s going on in my daughter’s life when she’s away from me. The night of the family dinner, I took time to chat with her teacher, who promised to send me a daily email to tell me how things went. I was and remain floored by that. Talk about above and beyond!

On the home front, she’s quite empathetic. Whenever someone is crying she wants to comfort them, and yesterday when I was lying on the couch the entire day feeling like I wanted to die, please God just let me die, she kept coming over and giving me hugs. She’s not a snuggler except when she first wakes up. Christian’s usually the one who reaps the benefits of that nice long cuddle, but once in a while I get one.

She also has finally, finally reached a cognitive level where she likes to watch real movies. For six and a half years, the only thing she wanted was Signing Times, Your Baby Can Read, and home movies. This summer she fell in love with “hoe-ee” (horsie), a movie called Second Chances. More recently she has attached to A Bug’s Life, and last night she was enthralled by Toy Story 2. It’s so gratifying to see her finally reaching the developmental point where she can follow and enjoy a story, you know?

When we read to her she spends as much time watching our mouths VERY CLOSELY as she does looking at the book.

When we read to her she spends as much time watching our mouths VERY CLOSELY as she does looking at the book.

I am sure there was much more I wanted to say, but I’m having hot flashes again, which tells me I need to go lie down. Whatever this virus is, people, I hope you never get it.

13 thoughts on “The State Of Julianna’s World

  1. Sarah

    Loved this post! I have the same concerns with Cameron. It’s the most difficult part of sending him off to school for me. Though they tell me every day when I pick him up how his day went, there are still so many things that I miss because he can’t tell me about them. And I also worry that he’ll be feeling or thinking something that he won’t be able to convey with his talker and since they don’t know him well yet, they won’t be able to read him. For example, I can read when he’s sick but will they be able to tell?

    We have not yet reached the full-length movie milestone. In fact, he won’t even watch DVDs like Baby Einstein and Elmo anymore. Nor will he watch anything on TV. He used to so it’s fascinating to me when it suddenly stops. And sometimes he’ll start back up and then stop again. But I’d give anything to have him watch a movie! Especially on the long car rides to IL!

    Love all the photos of your girl. She is one of the most beautiful children I’ve ever seen! And I love that she’s finding her voice!

    Hope you feel better soon!

  2. Mary Micaela Wright

    Such a joy to read your blog. I feel like I know Julianna and the rest of your family on a personal level. I was thinking if I ever get to meet Julianna in person I will want to hug her and kiss her like a long lost friend that the friendship never missed a beat in our absence from one another. Kate you are an amazing woman! Get well soon!

  3. Kelley

    Oh, maybe you have the epic virus that Emma had. It resulted in 2 days of vomiting, TEN days of fever (yes, ten), fatigue, stomachaches, and 3 doctor visits, including blood work. Did I mention TEN days of fever? Ridiculous. Yesterday was her first fever free day in TEN DAYS!!!

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