kira speak

just remembered this and don't want to lose it forever.

Kira's speech path came up to me in the hall while I was doing PTA stuff and said, "I have to ask this. Do you play the tuba?"

Me: um...no.

SLP: Well, Kira swears that you do. We were reading a book that had a character playing a tuba, so I asked if anyone knew someone who played the tuba. Kira said, "Mommy!" And I said, "Your mom plays the tuba!?! Really?" And Kira said, "Really." with a smug little smile and subtle nod of her head.

(I cannot do this justice in print, but I know the exact look the SLP was referring to. And I know that Kira knows that I do not play the tuba. I also know that a certain little girl likes a little extra attention during her group speech sessions.)

jacksonism and kira speak

Jackson: Mom! I had the strangest dream last night. There was this INSANE toy store where they said they only had toys never seen before. Only I HAD seen them before and so had Hansel and Gretel. At least, there was a brother and sister there. They might not have been Hansel and Gretel. I don't know. I didn't ask.

Kira (at bedtime): Knock Knock
Me: Who's there?
K: sleep
Me: sleep who?
K: sleep night night

Heading to the car in the Target parking lot on a 102 degree Tx afternoon:
Me: I'm hot
Kira: Me, too
Me: I'm tired
Kira: Me, too
Me: I'm hungry
Kira: Me, too
Me: My toots smell like a rose garden.
Kira: mmmmmmmmm

Just this second:
Kids bickering behind me:
Me: Do y'all need to be separated?
Kira: Yes.

Hello!

um...perhaps you've noticed that I haven't been blogging much. I'm not really starting back up right this second, but wanted to pass on some info:

If you sign up here, you'll get a coupon for a free appetizer at Chili's and help my dear friend, Teri, to win a contest at work. Thank you!

Back to blogging after the holidays, hopefully.

P.S. Please say a prayer, send good energy, think good thoughts for my sweet boy who has the flu. Thank you.

The Funk

You know how when you're a mom, you think you'll just power through whatever illness your body is fighting because you don't have time to rest? Yeah, sometimes you should rest.

I've been dealing with The Funk since last Tuesday. I did the PTA Pumpkin Patch fundraiser for Kira's school all day on Wednesday (We made $415!) and then went out on Wednesday night (Sound of Music singalong!) and stayed up way too late. Overdid it.

Felt like hammered poop for the rest of the week, but thought that I'd be able to do the garage sale Kam and I had planned for Sunday at her house. I was wrong.

If you have to convalesce, however, I highly recommend Kam and Teri's house.

Services include:
Hot toddies
Teri guarding the door so that your children MUST let you sleep for a two hour nap (bliss!)
Comfort food prepared by a professional chef - chicken with champagne cream sauce, spaghetti squash and quinoa. Yum.
Fabulous conversation and cute kids running around being cute

So, I'm pretty sure I've now moved on to sinus/ear infection and I'm heading to the doctor this afternoon. Hopefully with some antibiotics in my system, I'll be able to help make ghost pops for our next PTA thing, tomorrow. At this point, I'd just be passing on the plague, so I had to flake out for today.

Thank you Kam and Teri for taking such good care of me this weekend! And thank you Michelle for a fun movie night and for listening to me croak along to "doe a deer". And thank you Jane and Cary for making all day Pumpkin Patching so much fun.

And now I'm crawling back into bed until I have to crawl back out to pick Kira up from school.

Take your vitamins, y'all. Love, W.

made

I'm sorry I'm sucking so bad at the daily posting thing.

Crafting is kicking in to full gear around here. I finished up two skull caps for two cute little heads. I'll get those in the mail Friday. They are both for the cutie siblings of cuties sporting designer genes. Their mamas are friends I would have never "met" without Kira. Funny how big your world grows.

The scarf is for Derek's uncle. I promised it to him last year and finally finished it. I have three more promised projects I want to finish up in the next couple of weeks (Yes Poppy, your scarf).

Here's my stylist, Lulu:

Isn't she pretty?

I also made this hat for Derek's dad for his birthday. I didn't get a picture of it, though. Derek, of course, wants one, too.

Next up:

15 bean bags for the Pumpkin Patch PTA fundraiser at Kira's school

1 Devil costume

1 Devilishly cute princess costume

2 phoning it in Devil horns and Devil tails for the parents who don't want to dress up for the party

Michelle wrote a beautiful post about how all kids have special needs and all parents are just doing their best to parent their unique kids - check it out. I loved it.

Off to sew bean bags. Hope your day is lovely!

Little Punkins!

Jackson and Kira went to After Dark in the Park with their Aunties Beeka and Karen. I had to share this pic Beeka took!




(That police officer in the background is Aunt Karen.)



Thank you Beeka and Karen for always entertaining our Perdueligans in such fine fashion!

The Great State Fair of Texas - T21 edition

Last year, we didn't see one single person with bonus chromos at the State Fair. This year, we saw three!!! AND in the food and fiber pavilion one of the poster models was a young adult with Down syndrome!!

And we ate Fried Frito Pie!

Pics later when I steal them from my FIL.

(and yes, I know I'm behind again. But, I've already blogged more than I have in the past four months, so I'm calling this a success.)

NPR DFW part 2 Karma

So, I kind of jokingly posted today asking for donations for our local NPR station to end the everlasting pledge drive. Kind of a cop out 31 for 21 post, because I didn't really have much to say/time to say it, today.

And two hours later on my local NPR station, the show Think featured Alexandra Codina, the filmmaker of Monica and David.

It was a great interview. Too short, because it was on during the pledge drive, but very respectfully done.

The part that really stuck with me was Codina's point that she felt that Monica and David weren't limited by their disability so much as limited by everyone else's perception of their disablity. So true, I think.

There is a special screening of Monica and David, tonight in Dallas. I wish I could go! Dang PTA.

I can't end without saying that I cried most of the way through the show. When I hear anything about life with Down syndrome presented in such an open, accepting way, it just gets me. I think we are so lucky to be living in a time when so many doors are opening. Sure, some of them are open just a crack, and we have to shove them open with everything we have, but there ARE openings.

Windows and doors and slivers of light that make my daughter's future so much brighter.

I'll post a link to the podcast as soon as it's up. And p.s., I'm now caught back up with the number of posts I need for 31 for 21! (We'll see how long that lasts.)

Hug your babies.

Love, W.

NPR DFW

If you're in the DFW area, or even if you're not, please go to KERA or call 1-888-694-6931 and make a donation. Lord have mercy, I cannot take another day of this pledge drive. Thanks.

thoughts

Thanks y'all for all of the sweet comments on yesterday's post. Cate said that she wished she had a time machine to go back and hug us and let us know how things were going to turn out. All of us, all the new mamas.

I wish I could do that for the new mamas that are finding out right now. The ones getting shocked at birth. The ones getting unexpected test results. I wish I could tell them that it's going to be fine. Your child will rock. Your family will stretch and grow. Your world will get bigger and better in ways you never imagined. It won't be easy, but it will be good.

But, I think that it's a road you just have to travel for yourself. You have to be the one thinking: "Well, I'll just have the superstar kid with Down syndrome." "We'll get all the therapies! She'll be fine!"

And then realizing that your child rocks because they just do. Not because of when they hit milestones, or when they speak, or when they potty train. Not because of how closely they mirror their "typical" counterparts. Just because they ARE.

I think part of my guilt around Kira's birth centers on the fact that I totally discounted a huge chunk of society. And I didn't even know I was doing it. I just didn't see kids with different abilities, I mean really see them. Sure I thought, "I don't think I could handle that" and "those are some really awesome parents" when I saw kids who obviously had challenges. But I didn't see the value in the kids, themselves.

Now, when I tell a mom of a newborn baby with Ds, "Congratulations!" I mean it. Because that's a new life right there. Full of possibilities. Full of promise. A whole new journey.

And for the mama? It's not a detour. It's not a roadblock. It's a wider path. And when you're ready, and you look around, it's full of amazing people walking it with you.

And it rocks. Thank y'all.

The bubble

I don't know if I'll ever write down Kira's birth story. That was a tough 24 hours. I don't like to think about it, although I often do. Her birthday is always bittersweet for me. It gets easier every year, thankfully.

What I do want to write down is a remembrance of the 4 days after her birth. Kira was jaundiced and had a tough time keeping her temperature up at first. She had to stay in the hospital for those first few days. We were lucky that, at the time, my mom worked at the hospital. We were able to use a hospital room all day with Kira and it was such a gift.

My mom would get to the hospital really early to hold Kira. She would call me and say, "This girl is hungry! Are you on your way?" I'd be in the car, or in the parking lot, or running into the hospital. Kira and I would struggle through nursing for a bit, then I'd pump to get like an ounce or two of milk for a bottle feeding.

Derek and Jackson would arrive shortly thereafter and Mom would head home for some rest. We'd spend the day holding Kira under the light, trying to breastfeed, pumping, and seeing friends and family who would come to see Kira, entertain Jackson, and feed us.

Jackson would fall asleep for a nap on the hospital bed at some point. We'd all stay until late, then head home for the night. We'd do the whole thing again the next day.

I am so thankful for that time. It was like we were all safely tucked inside a bubble, figuring out who our little family was now. It gave me time to get used to the new reality. It gave me time to realize that, more than anything, I just wanted to take my baby girl home. I didn't care about Down syndrome. I just wanted her to be healthy and home.

The nurses at the hospital were so awesome. They took such good care of us. I never thanked them properly, and I feel bad about that.

I don't think my Mom knows how much those days meant to me, either. That little bubble of time was a precious gift. Mom, it's the best present you've ever given me. Thank you.

Big Kids

Yesterday got away from me before I blogged. I guess it'll be 30 for 21 for me.

We've had a crazy week around here. After a healthy summer, the kids, of course, managed to come down with a nasty virus three weeks into school starting. Jackson started running fever last Saturday. Kira started on Monday. I took them both to the doctor for strep tests. Not strep.

On Wednesday night, Jackson was still running fever and it got up to 104.4. So, back to the dr we headed on Thursday. Not mono. Not flu. Headed to the children's hospital for xrays. Not pneumonia.

On Thursday, Jackson's fever broke. I've found that his illnesses require a sacrifice of expensive medical testing before they'll go.

Kira ran fever for over five days, too. Though she never ran that high. It's funny because people assume that she's our medically fragile one. I always mention that she started crawling a week and a half after heart surgery. She's a tough chick.

And speaking of her heart surgery...we got the all clear from her cardiologist last month!! She only needs to see Kira on an "as needed" basis from now on!! Kira was born with a PDA and an ASD. Her cardiologist attempted to close the PDA with a device that essentially plugs it up, but Kira's was ginourmous and the device pulled right through it. So, on Feb 14, 2008, she had surgery to close it. They went in through her side and deflated her lung to get to it.

We thought she would just have to live with the ASD, luckily it was small. But when she had her echo done last month, there was no sign of the ASD!! Woo-hoo!!

I am so thankful that we have Cook Children's Hospital. My kids feel right at home there, and I'm thankful. I know that's kind of a weird thing to be thankful for, but when Jackson has needed to go in for xrays or whatever, he's not scared. He loves going there. Kira is understandably not thrilled to go for blood draws, but she isn't scared of the hospital. And y'all, she was SUCH a big girl during her testing last month. Sat up straight and tall during the EKG, kept it together, even though she wasn't entirely sure what was coming next. Tough chick.

We always eat lunch in the cafeteria when we're there. Last time, I looked down and realized that no one was in a stroller. They were both sticking close to me while we waited for our food. They stayed in line with me. We walked to our table together. They entertained one another while I went to get napkins and straws and stuff. I had to take a sec and recognize that here we were in the next stage, together. Two big kids and their mom enjoying lunch. They're still my babies, though.

Hug your babies, y'all!

Love, W.

P.S. While I was looking for a pic to put in this post, I remembered something else I wanted to say. When Kira started saying "Mama", I wasn't sure if she was really saying it, or just practicing her "muh" sound. After the failed attempt to plug the PDA, when they brought her too me right after she came out from under anesthesia, she snuggled into my arms, looked me straight in the eye, and breathed "Mama" with a sigh of relief. It was perfect.

The Twins

Of her many, many baby dolls, Kira has two in particular that she loves. They've had hard lives. They never have clothes on. One is covered in pen marks. But, they are loved, loved, loved.

I often find them nestled into giant pull-ups on my bed. Or tucked gently into Kira's bed.

The other day, I went to use the computer and found them again. It looked like they were all tuckered out after watching something on Netflix.

I love finding evidence of pretend play that was going on while I was busy somewhere else. I love that she thought to give them a pillow and that she went to the linen closet to get them each a washcloth blanket. I love that she's such a good mama. My biggest wish is that, if she wants it to be, mothering will somehow be in her future. Sky's the limit.

aaaaaaaaaannnnddd we're back! (31 for 21)

Grab This Button

31 for 21, y'all. 31 posts in 31 days in honor of my girl's 21st chromosome. And a great chance for a lazy blogger to get her mojo working again.

So, let's see. Where were we?

Kids are in school. Kira for a 1/2 day and Jackson in all day Kindergarten. Jackson had a bit of a rough start, but now absolutely adores school. Adores it in a way that is sure to get his ass kicked at some point in the future. Bless him.

Kira returned to school like the princess she is. Beauty queen waving like she was on the back of a convertible all the way down the hall.

I'm in full on PTA mode. PTA doesn't play, y'all. Serious business.

ummm....what else? Oh, we have a cat. Her name is Lulu. She rocks. She'll get her own post or two this month.

I'll leave you with first day of school pics. And a promise to do my best to blog every day. And maybe even talk about Down syndrome.

Missed y'all.

Love, W.

(Jackson showing "5" and helping Kira show "3", so I'll remember when this was!)

jacksonism

I don't want to forget this one.

Jackson decided that he wanted to take his lunch to school on Thursday. He, of course, decided this on Wednesday, so I wasn't sure what I'd have to put in his lunch.

Me: Ok, it's all packed! You have a peanut butter and jelly sandwich, cantaloupe, watermelon, carrots and celery. So, you're good to go!

Jackson: Actually Mom, I'd like to be GREAT to go. Could you put some peaches in there, too?

Happy Friday, y'all!

Having a busy (and fun!) summer - back to regular blogging soon. Promise. I had to share this song, though. LOVE it.

wordless wednesday - me and my girl

(way blurry, but look at her sweet face!)

jacksonism

J: Mom! Pick a number between a million and one hundred and two!

me: 3,175?

J: Nope! Try again!

kira speak

Yesterday, the kids were playing in the backyard. Jackson came inside, so I went outside to get Kira. I told her that she needed to come in because it was getting too hot. She wrapped her arms around herself, started shivering, and said, "ooooh....COLD!!".

Saying it doesn't make it so, babe. Get in the house!

ready for summer. thinking about Christmas.

Yep. You read that right. I'm ready for summer and thinking about Christmas.

I spent yesterday printing out all of the calendars for all of the free/cheap summer stuff going on around here. It's amazing how many really cool things there are to do. We're lucky to have a Levitt Pavilion that offers free concerts from now through July 3. There are several free/cheap movie festivals going on. And, of course, all of the Summer Reading Club events at the library.

So, I've gathered all of the info up into a Summer 2010 folder. I went ahead and put all of the regular weekly offerings together onto a weekly planner page, so I'll know what our options are each week, in addition to whatever special stuff is going on. I'm so excited!

Now for the Christmas part. I'm going for a mainly handmade Christmas again this year. I'm scouting the yard sales and thrift stores for crafting supplies and bookmarking tutorial links like a madwoman.

Anyone up for doing a Handmade Christmas with me this year? (Carrie!)

Also Christmas related during the summer:

-Target does a big toy clearance (think 75% off) usually at the end of July/first of August. You'll see them start to gather all the clearance toys onto one or two aisles. They'll do their usual 30%, then 50% off first. If you can catch the 75% off it's a great time to start your Christmas shopping or to stock up on toys for last minute birthday party gifts.

-Back to school sales on school supplies start Julyish, too. It is hands down the best time of year to stock up on art supplies. You can't beat .25 scissors and crayons, and paper, glue, folders, etc for even cheaper. I like to stock up on all of it for craft supplies for my kids and for gifts/party favors for the whole year.

Thank you for joining me for a Random Minute in Wendy's Brain. That's all I got. Hug your babies.