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!

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.

aaaaaaaaaannnnddd we're back! (31 for 21)

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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!)

31 for 21 recap

I wanted to do a sort of wrap-up post for 31 for 21, even if it is a few days late. I enjoyed participating in 31 for 21 this year so much. I found some new blogs, had lots of interesting comments - even some from new readers, and really relished spending some extra time with our community.

I didn't get a post about Kira's birth story done. I've been so focused on the ECI/PPCD transition, that I just couldn't make myself gather my thoughts well enough to do a post about that bittersweet day. Maybe next year.

I didn't quite make 31 posts, but I got closer than I thought I would! Again, maybe next year. If even one person changed the way they think about Down syndrome, it was totally worth the attempt.

Thanks for reading, y'all!

So, today went well

Kira's testing today went so well! I was so nervous. We've been told by her therapists that there was a chance that she might be doing so well that she might not qualify for services. A lovely problem, yes, but one that made us very nervous. Private therapies aren't an option with our budget, so if she didn't qualify, we would be winging the next two years.

So...the cut-off for services is scoring an 80 or above on whatever the test was. She scored a 77. And I was thrilled! She gets services AND is doing really well.

We're not sure if she'll start off in a blended class or in a PPCD (Preschool Programs for Children with Disabilities) class. I'll learn more at the ARD meeting.

The school is really cool. As I've mentioned before it is just Pre-K, PPCD, and blended classes. Each class has 10 students. The blended classes are 5 students on IEPs and 5 typically developing kids. They have a little computer lab, a library, a gym, and a teeny tiny lunchroom.

The speech path at the school worked for ECI for awhile. We saw her a couple of times when Kira was one. She came into the office today, while Kira and I were waiting for the testing to start, and said, "I don't know if you remember me, but I think about your daughter all the time! I remember how great her speech was so early and how verbal her brother was, too." It was awesome hearing that, and we are very excited to get to work with her again.

The testing itself took about an hour and a half. I was amazed that Kira hung in there for that long, but she was "on" the whole time. She really seemed to enjoy it.

I feel so much better now that we're on this side of the whole thing. I'm terrified of sending my tiny girl off to school, but I'm really excited for her new opportunity.

Thanks again y'all for holding my hand these past few days!

thanks y'all

I am so lucky to be a part of such a wonderful community of people. Thank you all so much for all of the supportive comments on my last couple of posts.

I'm getting on my own nerves with the worrying, so I'm shelving it until after the testing is done. If you're the praying type, though, could you send some our way for Kira's testing tomorrow? And if you're not, I'd love some positive energy from you.

Moving on.

Up for today: much laundry, Halloween costume construction, and some batch cooking. It's a gray day here in TX, so the kids and I are staying in. They are currently eating popcorn for breakfast. Hey, it's a whole grain.

I hope y'all have a lovely day and thank you, thank you, thank you for making a mama feel so very supported!

see here's the thing

Mothering itself is a hard gig. (and Fathering, too, I assume - but I can only speak from my perspective.) You're constantly faced with "am I doing the right thing?" And the guilt, oy the guilt.

I've said before that mothering a child with Down syndrome is Mothering to the 21st degree. And it really is.

Is-my-child-hitting-milestones becomes Is-my-child-hitting-milestones-with-5-different-people-keeping-track.

And while you hope that all of those professionals have your child's best interests at heart (and we've been lucky in that respect, I think) the reality is that this is their job. And some days they don't want to be there. And some days they are thinking about their own kids. And some days your child is the hour they are just trying to get through.

And I'm having a hard time with turning my girl over. I'm sad. With Jackson, Derek and I just decided for a variety of reasons that we wouldn't do a traditional preschool. With Kira, it's this BIG DECISION that comes with more testing, and more paperwork, and new people observing and commenting and grading.

So, I worry about Jackson's future. But with Kira it feels that all of these decisions when she's just an almost three year old little girl will have such huge import on her future.

And who the hell decided that I was qualified for all of this? I know that with our kids we should presume competence, but I'm having a hard time believing in my own competence.

I'm sure that I'll look back at this post next year and realize that I was worried for nothing. I'm having a hard time right now, though.

procrastinating

I'm supposed to be filling out the paperwork for Kira's PPCD testing right now. Obviously, I'm not doing it.

I went to pick it up yesterday, and I was really surprised at how emotional I felt when I left. I almost started crying right there in the parking lot.

The school is nice. Everyone I've met is very friendly and I've heard wonderful things, so it's not that.

When I got there, I was surprised to find Kira's ECI coordinator there, too. She just happened to be in the office where I needed to pick up the paperwork. And then it was about five minutes of signing this release for info, that release for info, and three thick stacks of paper for me to take home.

The PPCD coordinator (no idea what her title is) said, "Now, it's Down syndrome, right?" and when I said yes, "Oh, we LOVE Down syndrome. We have two with Down syndrome in the class right next door! She is coming here, right?" There are, I think, 10 different PPCD programs here - most are in the elementary schools, but one is just preschool for 3-4 year olds and kids on IEPs. They have classes with just typically developing kids, classes just for kids on IEPs, and blended classes. Kira will most likely be in a blended class.

I think what bothered me was that here we are at the start of the next chapter and to the powers that be Kira is a pile of paperwork and "Down syndrome". And while I have no doubt that they will love my daughter, it's not because she has Down syndrome. She's my smart, beautiful, funny daughter not a bunch of test results and check marks on a development chart.

Throw in my ambivalence about sending her to preschool five days a week at the age of three and I'm a mess.

A procrastinating mess. Ugh.

dangit

I missed two days of 31 for 21. I spent Saturday morning and early afternoon frantically sewing, then we headed to a birthday party and then to the in-laws for the rest of the weekend.

I'll post two extra to at least get the 31 in.

Final total on the crafting this past week: 1 tutu, 2 scarves (crochet), 3 capes (1 vampire, 1 superhero boyish, 1 superhero girlish), 1 skirt for Kira's costume that turned out ridiculous, 1 pants for Jackson's costume that were way too short

The birthday party we went to was costumes optional. I really thought that everyone would be in costume, but only like three kids were. Jackson wanted to be vampire batman (?), so I made him the vampire cape. I wanted to make a sort of jumpsuitesque thing but ran out of time. So, he wore the cape, his batman mask, vampire teeth, a batman underoos shirt, and the too short pants. He spent the whole party running around in just the underoos shirt and too short shiny lounge pants (think Hugh Hefner highwaters).

Kira ended up wearing Jackson's glutterman suit from last year and her girly superhero cape that I made. Of course she spent the party in just the lime green jumpsuit. That costume has had a hard year, so once we got to the party the seams started popping open. Nice.

No one asked what their costumes were supposed to be, because I don't think they were quite sure if they were costumes or not. I don't know how this is reading, but the memory of it is making me laugh so hard I'm crying. They looked like poor little urchins running around that playground!

Now for this week:

We have Kira's testing for PPCD. I'm so nervous. I have to call and get a copy of her hearing test to take with us. And I have to go pick up the paperwork to fill out. I'm nervous.

I need to make new costumes for Saturday. Honestly, I'm tempted to just raid the dress-up box for both of them.

Anyway, hope everyone had a lovely weekend. More later.

the best part

Down syndrome New Mama had a lovely post sharing her feelings about "the best part of Down syndrome." I've been thinking about it and kept ending up with a three way tie. I love our kiddos' eyes. I adore our kiddos' feet. And the flexibility because of lower tone amazes me.

So today, Kira put on a demo of why I love two of them.

She LOVES her toes. I mean loves them like a baby doll or a blankie or something. She talks to them all the time and likes for us to talk to them, too.

Today, she was eating an apple and apparently her toes were also a bit hungry.

Kira: "Toes? Bapple? es...bapple"

She pulled her foot up even with her chest and gave her toes a nibble on the apple. Then she pulled her foot up to her mouth for a quick "tiss" on the toes followed by a hug that looked a lot like she was rocking a baby, only instead of a baby, her leg and foot were completely tucked up next to her chest. I wish I had been close to my camera. AND the nice part about it is I don't have to worry about having a back-up lovey replacement for her toes!

So, definitely LOVE the feet LOVE the flexibility.

But, oh how I love her eyes.

quick post

Sorry I don't have much time (or much to say) today. I'm busy making birthday gifts - 4 of them - for parties in the next few days. I've finished a tutu and one scarf. I have one scarf and one superhero cape left to go. And then the kids' costumes. Oy!

The scarf took me two days to finish. Kira sat with me several times and played with the yarn and pretended to crochet while I worked. It was very sweet and lovely to be able to share that with her.

If you crochet (or knit - I'd love to learn), what age did you start teaching your littles? I'm not sure how to get started with her, but I'd love to pass the creating on to my girl. And to Jackson, too, if he's interested.

Again, sorry this is short and not Ds related, I just want to make sure that I really post 31 times!

wordless wednesday

kira speak

Kira seems to be in a new language development period. A few quotes from yesterday:

- I was blogging and she came in the room and said "oll-uh". I knew she was approximating a word and not just giving me a dispatch-from-Kira, but for the life of me, I could not figure it out. Until I followed her into the living room and saw that she was trying to open up her STROLLER for her baby doll. Duh, Mom.

-Last night we were watching Dancing with the Stars (go Kelly!) and she looked up and did the sign for phone, said "i-tuh" which I think is "I talk", and said "Papaw". We said, "Kira, do you want us to call Papaw?" and she said, "NO!".

Then about fifteen minutes later, she did the sign for phone, said "i-tuh Nene". We said, "Kira, do you want to call Nene?" and she said, "es". We of course had to let Papaw know that she had no interest in talking to him.

-Monday nights are "boys night" while I watch DwtS. Boys night = hot dogs and fritos. So, last night, Kira introduced her newest word, "ot dog".

Oh, and I remember one from last week that I wanted to get down. Derek was off and I was taking a shower and getting ready to go somewhere about the time he usually leaves for work. I came out of the shower and Kira looked at me and said, "Mommy? Work?". She was totally making the connection between the getting ready and the time of day and transferring that from her Daddy to me! Of course, I had to say, "No baby, Mommy is always at work." (She doesn't say work that clearly, but I'm not sure how to write her approximation. She says it along with the sign for work and it's pretty close to the actual word.)

I know that sign language can be a hot button issue with our kids. Some parents feel that using sign language might hold their kids back from speech development. I can see that point, however in our case, sign language is a huge help. When Kira has a sign to go along with an approximation, I know right away what she's saying. Once she begins actually saying the word, the sign disappears. I think, for Kira, sign language helps to reduce frustration and encourage communication.

One more story - Kira made up her own sign to use when she wanted me to sing lullabies to her. Very quickly, she started saying "bye-bye" and using the sign with it. So, I knew that "bye-bye" was temporarily "night-night". Now she's saying "nye-nye" (no idea how to write that) and because I know right away that she's saying night-night, she doesn't use the sign. Now, she only uses that sign when she wants me to sing lullabies.

While I would love for her to have the vocabulary of her brother at this age, I LOVE the fact that she uses her limited vocabulary in the ways that she does. Watching her problem solve and figure out how to communicate is really amazing.

weekend pics and a Ds observation

We had such a wonderful time this weekend. We try to do a get together with my Mom's side of the family at least once a year, twice if we're lucky. My aunt found an awesome cabin near Lake Whitney this year. The cabin was perfect - lots of room for everyone and well stocked with anything you might need - dishes, movies, games, toiletries, etc. The surroundings were rustic and beautiful.

4 generations were represented - my grandmother, my mom and aunt and their husbands, my siblings and I and our spouses, and our kids.

My grandmother brings me to my Ds observation. I know that this isn't true of all individuals with Ds, but I do think that the chance to have a greater capacity for empathy resides in the bonus chromosome. Kira will make her grandparents crawl through fire for a smile. The second a GREAT grandparent walks into the room? She runs over for a hug. Even though she rarely sees her great-grandmothers and I know she doesn't recognize them, she knows that now is the time for a great big hug.

warning: the rest of this post is very pic heavy and probably only of interest to my family.

Mountain Man Derek

This pic cracks me up.
The guys couldn't get TV reception in the house.

This was the only spot where they could get reception for this particular game.

When the next game came on, they had to move the tv to another spot!

um...you might be a redneck if...

I'm not sure what Jackson was doing,

but based on my face he was about 2 seconds from getting in trouble.

Heading out for a walk in the woods

Our view on the walk

This pic makes me think of those shots where you see all of the paparazzi behind a star.

Jackson making rolls with my aunt

My cousin carving a pumpkin

Kira protecting her pumpkins from my cousin

She carried those pumpkins around all weekend - so cute.

cutie girl

cutie boy

Jackson learning chess from my cousin.

My sweet cousin spent about an hour and half teaching him.

lovely weekend

We just got in from a lovely weekend with my Mom's side of the family. Lots of laughter, yummy food, and not much sleep.

Hope everyone had a wonderful weekend. Pics coming up this week and more Ds related posts for 31 for 21.

Off to catch up on laundry and (hopefully) go to bed early!

navigation

Dear Son,

I know that you know that the Library means a lot to this family. It's where your Dad and I met. It's where your Dad works now. You were about one week old the first time you went there. Same for your sister. We go at least once a week. Sometimes we go several times in a week. It is five minutes from our house. We love the Library.

And so, dearest love, I assure you that when I put your sweet little self in the car to head to the Library, I KNOW WHERE I AM GOING. I AM NOT LOST. YES, I AM SURE.

Love,

Your Mother. And Santa.

Flashback Friday

Flashing all the way back to last Friday! State Fair pics! It was a cold drizzly day and we had so much fun.

What should we do first Kira?

Me eating

(fried butter - FIL bought an order and made me try a bite - gross but good)

Me eating

(shrimp corn dog with spicy sweet jalapeno sauce)

Me letting Derek know I'm tired of him taking pictures of me eating

Jackson eating

Faux eating

Cute shot of the kids while we were trying to get a pic of all the Perdue grandbabies

Jackson taking a break in the butterfly garden. We didn't see many butterflies, but we saw LOTS of different caterpillars. We were the only ones there, so we had the luxury of a tour from one of the docents.

Kira spent the day riding in style

Jackson and me.

I'm pushing the bag lady cart.

We looked like a caravan - two strollers, one wagon, and the cart.

Ridiculous.

Cotton candy and the starlight parade to end our day

Not one single shot of Derek, though. I'll have to steal some pics from the in-laws.

would I change it - revisited

I recently had a discussion with some close friends who also happen to parent children with funky chromosomes. During the discussion, the "would you change it" question came up in a roundabout way. This is a hypothetical question that can really divide our community, I think. And for the record, I don't think it matters where you fall, or if you even think about it. We're all families loving our kids, trying our best to do what we think is best.

So, back in March, shortly after I started blogging, here's where I stood and what I said: No, I wouldn't.

I was really glad for the chance to revisit my thoughts, and here's what I said to my friends:

For the record, I am "one of those moms". I wouldn't change it.

If we're playing the "if I could change it" game, then what I'd change is society. I'd change society to a version that accepts people as individuals, as having worth simply because they ARE, not because they meet some predetermined level of achievement that somehow equals value. I'd change society to a place where the person sacking the groceries is considered as worthy as the CEO of the grocery chain.

Ds is part of Kira's genetic make-up. In ways that I'm not even aware of, it has had a say in who she is. I think she rocks the universe.

I would take away her heart issues. I would take away upcoming struggles. I would take away prejudice. Taking away Ds wouldn't guarantee that she wouldn't face any of those things. It might, however, take away her gorgeous eyes, her amazing empathy for others, and who knows what else.

But here's the true heart of the matter: we can't change Ds. We CAN change society - one person at a time. I'm different, Derek is different, Jackson is a different person than he would have been without Kira as his sibling.

One at a time. We can change society. I'll keep my daughter just as she is.