Just RK

I posted this on the iVillage DS board today, and though it uses pictures I’ve posted recently here and on Braska’s blog , I thought I’d repost it here. Because sometimes I forget just how blessed I am… Lately, my attitude-filled toddler is not wanting to cooperate with the dozens of pictures that I take every day. So I get a lot of unusable pictures. BUT her dad captured one on Sunday that made me stop and really realize how far we've come... Just over 44 months ago, Braska was born, we were shocked, I went into meltdown, and all rational thought left my brain, apparently. Even though I'd had experience with a variety of teens and adults with disabilities, including DS, I had a picture in my head of what my little girl would be like, and it wasn't pretty. It was grim, and boring, and unfun, and sad. But wow...if I'd only been able to get a glimpse of THIS on that cold day in November... I thought all my dreams of cute bows and girly clothes were lost. She wouldn'

Take a couple of great smiles and call me in the morning.

*I love iced tea. But I like it really weak. Light, I call it. I don’t like a strong or bitter tea. Maybe it’s more like a lightly tea-flavored water, with a splash of lemon and Splenda. When I get tea in a restaurant, that initial glass will make me several glasses because I’m constantly just adding water (which I also order for my little habit) to make it right. *Most of the time if I'm in a restaurant, I get water. But if I get lemon wedge or two with it, I can squeeze it into the water, add a little sprinkle of sweetener and I'm good to go with a nice (again...light) lemonade. Yum! *Speaking of drinks/tea, my favorite summer drink is a lightly sweetened decaf mint tea. In 6 cups of water, I toss 2 regular decaf tea bags and 2 decaf mint tea bags (sometimes mint green tea, sometimes just peppermint tea). I microwave it 8 minutes (thank you Betty and Jessica…from years ago!) add Splenda while it’s hot, then pour it in the pitcher over lots of ice and fill with cold water

How are you supposed to care about someone close to you and not want to give what-for to those who make them miserable? How am I supposed to feel the need to care for lonely and mistreated orphans without becoming depressed and sick and overwhelmed at the conditions they are in? How are you supposed to befriend a person who is not meeting their potential without becoming frustrated at their lack of concern about that fact? How are we supposed to stand up for what’s right when it brings to light so many evidences of what’s wrong? How am I supposed to invest my life in others only to be made vulnerable enough to be hurt deeply? Balance is hard.  I’m a fixer. I need to correct wrongs and make things better. Right. But it’s not always (or even usually) up to me. It has really been heavy on me lately that in working on myself in a variety of ways, learning to feel more and DO more for people who are in need, that I seem to have a consistent upset about it.  The urgency is good.

The girls are home. They were very excited about their time with Grammy and they were excited to see me, which is nice.  They generally don’t seem to care too much if I’m around or not if others that they like are there.  For those of you following the school saga, there’s another piece of the fun puzzle to add.  Recap: Miss N was Braska’s teacher last year.  We like her very much.  Braska was assigned to her again this year, but in the afternoon.  That was a no-go with me.  So after the short-lived no-budging policy, they moved Braska to the morning…to Miss N’s class.  YAY!  And when we thought it was all settled…. the phone rang again. Miss N called to tell me that she has just accepted a new position within the school to work with the kids getting ready for Kindergarten, and I’m happy for her that she’s glad for the move. But we’ll miss her as B’s teacher.  She assures me that I’ll like Braska’s new teacher, as she was Miss N’s mentor. She sounds like a good fit.  We’ll get

The girls have been at Mom's since Monday afternoon. I have been working on cleaning the carpets and rearranging rooms. Last night I finished the last of the carpet and put furniture back where it goes. And I am tired. I pick the girls up this afternoon, so I'm doing the last few bits of cleaning and organizing. It rained everyday so I did not get to paint the shutters like I had hoped. But maybe next week...

I received a call this morning that Braska will be in class in the morning with her teacher from last year, the same one she was assigned to in the afternoon last week.  She’ll be in Miss N’s “early 3’s” class.  Basically, she’s repeating last year, so to speak, and I’m great with that.  She’ll enjoy meeting new kids, and then she can advance next year to 4’s (providing she’s ready…I don’t want to make assumptions).  Since her birthday is late, she gets basically 3 years in preschool anyway and will be almost 6 when she starts kindergarten. We’ll plan on this for now.  If she starts with the constant illness again when school starts, we’ll shift gears.  I feel good about whatever we need to do.  That’s a good feeling. Next stop on this ride, adenotonsilectomy on August 4.  The girls are at my parents’ for a few days this week, then we’ll hang out and enjoy the end of the summer before surgery. 

I’m tired, and it’s late, and I had a nice evening so I want to go to bed with that peace to put me to sleep. But I wanted to share the latest in the school saga. Remember when I said yesterday that things can change quickly??  Late today the school called, a different contact, one that is more familiar with us and a person I respect for the work she’s done for us before.  She told me that after talking with a very wonderful member of Braska’s team and others at the school, they’ve decided Braska WILL be moved to a morning class.  I don’t know the details yet, who her teacher will be, if it will be an “early 3’s” class or a “3’s” class.  I told her I’d prefer the “early 3’s” option, and she was surprised.  But I feel like that would allow Braska to learn from her classmates, both those with IEPs and those without, and she wouldn’t be quite so much smaller,  possibly. (We’ve had some issues related to this, but I’ll have to talk about that later.) I’ll know more next week.  We’re

Several of you have asked questions in comments or emails, so I’ll elaborate a bit more about the school situation… As far as why she was put in the afternoon class and if we had a say …  There was no request process or any kind of communication from the school until we received the call to tell us where she had been assigned.  We were told if we had any issues with it to call someone, and that’s what I did.  The person apparently in control of these things is who told me that there wouldn’t be any “shuffling” happening.  Obviously, had I been given the chance to put my 2 cents in, I’d have been very clear with this info about her needs at that time.  It never dawned on me they would choose to put her in an afternoon class.  It seems so very obvious to me that a child who has been noted as having focus issues in the classroom anyway would be assigned to start school at the least fresh time of the day.  I’m glad they wanted to put us in Miss N’s class, and if that was a special conces

Well, well, well… it’s been a very interesting couple of days. Thanks to all of you who have given input on the afternoon school versus nap situation.  I’ve really appreciated all the different perspectives and it’s been good to think through a variety of things. Before I give you the latest, I’ll answer a couple of questions… Bedtimes : The girls go to bed between 8 and 8:30p usually closer to the 8:30p mark.  It’s rarely much later than 8:30p unless we’ve been away from home for the evening for some reason.  One thing to consider regarding bedtimes with Braska is that she is tube fed for the majority of her nutrition, and her intake is limited to the volume she can hold at any one feeding.  We don’t use a pump, so she just gets bolus gravity feeds 4 times a day in addition to whatever she might eat orally.  But she ALWAYS needs a feeding right before bed to get her calories and fluids in for the day.  She simply cannot tolerate all her required amounts in volumes that would a

When did your kids give up their naps? Did you alter the bedtime to make up for the sleep? How many of you have preschoolers who go to school in the afternoon?? I found out today that Braska has been assigned to an afternoon class for the upcoming school year. She is to go from 1 to 4pm Monday through Thursday.  I’m not sure what to think about this.  She still naps, and needs it—no doubt—so this would be quite a challenge. The good news is that she has the same teacher she had last year, and we do really like her.  I was hoping it would work out that she’d get Miss N again.  So that’s worth something. Not sure what to do. Not sure what the options are. But I have the distinct feeling that just shrugging and saying, “Yeah, ok. Whatever,” is not the right response this time.  Not right for Braska.  So more pondering to do…

On Saturday, my whole family was at our house for a get together for my sister Joy’s 21st birthday.   We grilled, hung out in the back yard, played some washers, and ate plenty.  It was a really nice evening of weather, except for the mosquitos, and I think the consensus was that it was a good get together.  I was able to sit and relax a while, and that is so valuable, especially when hosting.  I got to catch up with Ryan, who I hadn’t seen in quite a long time since he’s working/touring for his college this summer in OK and surrounding parts.  At one point, Ryan, Joy, Julia, and I were on the deck, relaxing at the table for a bit while the rest were sitting out in the yard.  I hardly even get to chat with the “squeeks” as we’ve always called them, and almost NEVER all 3 at the same time.  I was out of the house already when the last 2 were born, and Joy was only 2 when I left, so it’s been different.  It was good to catch up with the three of them without the “older set” int

Remember little Solana ?? She's dropped to second place and today is the last day to vote, and we want her to WIN! Please go vote for her again...(it's once a day allowed) and let's get her on the COVER!!

Today Braska returned to school after being off all last week with a fever that wouldn’t quit, and when it finally did, would show up again shortly.  She was all good on Saturday and Sunday, so off to school we went this morning. The nurse called mid morning to inform me that she had a fever again.  Good times. I decided to call the pediatrician, since it’s been over a week with this fever stuff.  She wanted to see us, so in we went.  (Thanks to Julie for keeping KiKi on short notice so I didn’t have to wrangle two girls during naptimes.) Dr. A agrees that the odd little symptoms and strange happenings lately may very well be related…but we’re not sure how.  (Fingernails splitting in the middle, horizontally, peeling off in very odd ways. Behavioral changes that don’t make any sense. Obviously, 9 days of fever, give or take one or two in there somewhere. Congestion. Dry mouth. Loose stools. Agitation that seems like pain, but only in small, isolated bursts, then nothing for a while

Superstar!!

I just heard about this tonight… there’s a really cute little girl who is in first place in the Parents Magazine cover contest.  She has DS, and we think it would be SUPER cool if she could win!!!  Click here to see her picture and vote for her ! And please spread the word.  How cool would this be??!? Registration is required to vote.  I know that can be annoying, but really, you don’t have to sign up for anything to buy or anything like that… and if we could get a little girl with DS on the cover of PARENTS magazine, printed for millions… that would be pretty cool!  It took me barely over 60 seconds. SO worth the time! Here’s part of what I received tonight about Solana… My husband and and I have been blessed with two beautiful girls. Soledad is almost 5 and Solana is 2 1/2. When Solana was born and we were told she had Down syndrome our lives were turned upside down. Through our faith in God and the support of friends, family and various organizations, we quickly realized

I’ve never been on a vacation with my husband. We’ve been on trips and they’ve been good trips, usually visiting family in other states, but we’ve never gone anywhere just for fun. I love audio books. I have them on my phone all the time. I’m on book 23 of “The Cat Who…” series by Lillian Jackson Braun. Light murder mystery, a little quirky, nice to have in my ears while I’m working around the house. One day, I’d like to be able to make one dinner that will feed all of us. Instead of making 4 meals like I do now.  It’s exhausting. Some days it is only 3 if Kinlee eats chicken and veggies with me. My dreams of how I would like my life to be are so simple compared to many others I hear.  I don’t need frills. I don’t need massages. I don’t need brand new cars. I’d love a comfortable budget for groceries, a car that runs without warning lights, the ability to go out with friends for lunch occasionally, and savings enough to ride out the little storms that arise.  And I’d lik

The time is moving quickly.  This girl seems to be the poster child for “they’ll grow up so quickly.” She has really started to just talk.  Not like words, that we can count or keep track of.  She just talks.  I don’t know how that works without all the therapy and practice and such, but she’s got it!  I was debating compiling a list of her words, and it just got ridiculous because it’s pretty much whatever is required for what she wants to say.  She’s got a long way to go before she is giving speeches, but public speaking would not surprise me as a top skill at some point down the road. Yesterday, it was “want up bed!” that came out. She wanted to get up on our bed while I was getting dressed to go somewhere.  And then she said, “touch heart” when she wanted to be lifted up to play with the chunky wooden heart that hangs from one of our ceiling fan pulls.  Always surprises me. Today in the van on the way to the store, she just was chattering with Braska, as they often do.  They mi

M called a bit ago to tell me he had a little celebrity sighting/chat at work. He now works for a city government that has lots of influential and well-to-do St. Louisans living in or near there. It’s a financial center in St. Louis County and is not short on money at all. It’s like a little mini-downtown, luxury condo high rises and office towers in the middle of nothing else higher than a 2-story houses for miles. But celebrities? I didn’t much think about the possibility. He was at a place doing whatever computer guys do and was approached by a guy and his family who needed assistance. Unfortunately, all M could do was send them off to someone who worked there (this is one of many city buildings he services), but he was pretty bummed he couldn’t have helped him. Because it was Joe Buck! (If you need me to tell you which one is Joe, I sure hope you don’t fool yourself into believing you’re a football fan! That’s Troy Aikman, SuperBowl Champ Quarterback for the Dallas Cowboys

Got up early. Straightened the living room before I got them up. Made M's sandwich for lunch and kissed him goodbye. Then went to get them up. Braska's still not feeling well, but she has moments where she seems to feel fine. Kinlee was only up twice last night, not for long each time, and this is an improvement over the previous nights. Breakfast was waffle and scrambled eggs for Kinlee with a yogurt chaser, formula and then yogurt for Braska. All was well, and I thought we might be seeing the beginning of a pretty uneventful day. Then came the vomit. Braska had a couple episodes again. Congestion and drainage in her throat caused it, I think, along with the fact that she was needing to "go peeyoooop" as she told me later. When her body tries to eliminate difficult things, the rest of it seems to have trouble functioning properly for a few moments. We cleaned up twice, then headed for the bath. First she went potty and "peeyoooop" on the little potty,

It was short-lived. I’m worn out, but we made it through the day, as we always do.  I just wish I could learn the skills to keep things more level all the time instead of these little valleys surprising me occasionally.  To help me not feel so bad about complaining about my girls, who I AM aware are really not very high on the challenging scale of toddlers in the real world, I thought I’d show off some of their more peaceful moments lately.  6/29 Naptime Love those little fingers in the blanket. Braska used to do the same thing. 7/4 Naptime.  Kinlee seemed to enjoy having the puppy on her head.  Later on 7/4… Miss K in Mommy’s shades. 7/6 Naptime. (And yes, our headboard is a mattress.) Sleep tight, my little beauties. (And if you didn’t see the fun little videos of sisterly interaction on Braska’s blog , go check those out, too.  It’s fun to watch them learn to play together.)

I love my girls. But we’re far from perfect in our relationship. Yesterday's post makes many things sound rosy. Today is all thorns. People have posted lately about days they’ve walked through that have been hard recently. And they are right. Each instance was truly something I wouldn’t want to have to deal with, and they did so with amazing strength. Some people wish they had a toddler to pester them all day. They desperately miss those they’ve lost. They dream of one day having a child who will make a royal mess of the house. I’m blessed with two such beings. Why is it then that a day like today gets put in the “so darn tough” category in my mind? Why can’t I seem to get this mothering toddlers thing down? What I’m dealing with is so miniscule in comparison to so many others. Yet it FEELS so very hard right now. The clamoring for my attention just plain wears me down. I’m exhausted. I want to put them each in their cribs and just sit for a while. Why don’t they listen? They k

My super cool friend Courtney asked: Is there a story behind Kinlee's name? The answer is yes. I couldn’t remember if I posted on this, but thought I did.  So in looking back on Kinlee’s blog, I didn’t find it.  I’d forgotten that it was posted on this blog when we found out she was a girl . Can I just say, what fun to look back at the time when she was still a tummy baby… and the comments! Some of you have been around SO long!  I love that!  I need to remember sometimes how many buddies I’ve got that have been around for more than 3 years now! Anywho… It's not like we could go with anything normal, I mean, come on! We're a house full of weird names. The name is a combination of some family names. Lee is for Auntie Rachel's middle name, Car is for Grandma C, Carole, and the ene is for Grammy's middle name, Irene. And it's kind of just coincidental that the Kin is what's left...get it? Like kin=family. I wanted something girly and cute. 

Today I received an email from a blog friend (who I didn’t recognize immediately…sorry!) asking a question that prompted what I have been meaning to post about for a while.  So I asked permission to share the email and response, removing identifiers, for a couple reasons. 1. I don’t like to rewrite things when I don’t need to.  Who has the time? 2. I know there are SEVERAL of you other blog buddies out there who can relate to this situation, and I’d really love to share your input with her as well. So read along, and please share your thoughts…if you want to do a post of your own, or you already have one that’s relevant, leave a link in the comments. Thanks.  Online support is VITAL, I think. I’d be lost without all the things I’ve learned from the other “DS moms.” (I know…not PC.) ______________________________________________ Her email: I have a 2 1/2 year old who has down syndrome, and an 11 month old who is 'typical'. My question for you is: how do you not com

Because I don’t have the energy to get up and do much of anything besides wiping noses or refilling Kinlee’s cup now that lunch is done and over, I figure I’ll throw some things up here that I’ve thought of lately and wondered if anyone knew*. (read: and/or cared about) I really wish I could develop a better schedule for my days. I function better, at least more efficiently, when I have a clear structure. Somehow the girls don’t seem to want to help. I’m waiting to hear back from the YMCA about our financial assistance application.  We have asked to have a discount on the membership, and I included a nice letter, with pictures even, explaining our “extenuating circumstances” that they asked for. Specifically the expense of Braska’s formula now that we’re no longer on WIC. $1300/month.  Anyone wanna add that to their budget?  I didn’t think so. I don’t like to talk about WIC.  I felt uncomfortable every single time I checked out. We used it. It served a purpose. We did it w

After searching for the dye-free Children’s Tylenol, it dawned on me last evening that I might be able to use regular adult tablets and cut and crush them.  I don’t know why I didn’t think of this before, especially since this is what we did when Braska needed to take amoxicillin. (No dye-free available there either.) I’m going to blame my limited brain function due to sleep deprivation. I talked to a pharmacist here locally and made sure it was all good, and then we cut the caplets to the right amount and crushed them, serving the powder in applesauce.  She took it really well. So if you’re out and you find the dye-free liquid, still get it.  I’d like to have some for times when I’m not in a position to be cutting, crushing, and mixing. Though Kinlee’s not had the fever as high as Braska, she has been up A LOT the past couple nights.  Saturday night it was every hour—on the :40 of the hour…how does she know that??—from the 9pm through 3am hours. Then up again at 6:30am, of cours

I have spent the last couple days looking for ANY PLACE that has dye-free Children’s Tylenol, or any generic acetaminophen option that’s dye-free.  There isn’t ANY to be had!  Even online I’ve struck out.  Thanks to the Tylenol recalls of late… grrrr. Braska has a fever that won’t quit.  And her surgery is coming up soon, so we’re supposed to use Tylenol instead of the dye-free ibuprofen that we generally use. But that’s hard to do when I can’t find it! So if you have a reason to be in a pharmacy area of the store you happen into in the next day or two, and if you see dye-free Children’s Tylenol or equivalent (NOT ibuprofen) please please PLEASE get it and I’ll buy it from you pronto and pay shipping to get it to me. Thanks! Hope you’re all having a great weekend!

1. Does this happen to anyone else?  Every time there’s a nice long holiday weekend to enjoy and relax, I get sick. Or at the very least feel very icky.  Sure enough, after acting completely bizarre and disturbing, at times, for the last couple of weeks (more on that in another post…maybe), Braska has a 101.6 fever tonight. And I’ve been feeling horrible today, worse tonight, knowing that it’s only going to get worse.  I can feel it.  It follows the same pattern.  She’s only been to school 6 days, and here we go again.  I seriously think I’ll lose my mind. 2. Kinlee’s really twitching me out with her talking.  After we got in the van on Wednesday morning, she looked and pointed at the seat next to her and said, “Braska’s seat.”  Possessive, identifier, two words. Clear as day. (Well, to be fair, it was more like “Brakka’s” seat. The SK sound is hard.) I don’t know much about normies, but that seems pretty good to me for less than 17 months.  She’s then been bringing me everything in

No this is not a retro commercial for phone service. It’s a chance to win an iPod Touch and benefit a little boy who is soon to come home to his forever family…all in one little step! Shelley has posted all the details for dear Lisa, who is raising money for a family to adopt the child she has been praying for, Zhora, soon to be called Levi. All donations are tax deductible through Reece's Rainbow. Each $10 donation will enter you one time in the drawing for the iPod Touch. $20 enters you twice and $25 enters you 3 times in the drawing. All donations go directly to Zhora's grant fund. If you are not able to donate or don’t really need an iPod Touch, then please at least post the button for others to see.  Entries can be made until July 24th. Click here for more details!! <a href="http://www.only1mom.com/2010/06/ipod-touchand-another-orphan-coming.html"><img src="http://i185.photobucket.com/albums/x198/wish4rk/levi-adv

A group of bloggers, forum buddies, and local yokels are getting together over Labor Day weekend here in the St. Louis metro. We've made some of the hotel arrangements today, and plans are starting to come together! We've already got people coming (driving AND flying!!)from KS, IA, TN, MO, IL--I know I'm forgetting someone! Sorry!--and we are hoping for one even from Rhode Island! Woo Hoo! I won't be posting specific details just because...well, you know...there are weirdos out here in the world wide interweb. So if you're interested, drop me an email (braskasmom/at/gmail dot-com)or leave me a comment here with your email and I'll get you details. It's gonna be a great weekend!