Thursday, December 31, 2009

My wish for you…

Since I can’t say it better myself…

Thursday, December 24, 2009

Happy Christmas Eve

The girls are tucked into bed after opening one present each. (From Miss Linda…more on that later. They were awesome!!!)

They read a Max and Ruby Christmas book and then we read the Christmas story out of Luke 2, as they were cozy in their Christmas pajamas.

I hope you all have a wonderful Christmas Day tomorrow!

Wednesday, December 23, 2009

Christmas Sisters

If you’re a TRUE follower of our family blogs—and hey, who isn’t, right?—then you’ve already seen the posts on KiKi’s and Braska’s blogs showing off their cute Christmas wear pics.  If you’ve not seen them, go ahead.  I’ll wait.  Yeah, now, go ahead!

Ok, now that you’ve seen the good ones, I’ll share some of the sisterly interaction that generally gets left in my pictures folder without making the cut for the blog.  Some are cute, some are silly, but they’re all real. And you’ll see that one sister is definitely the instigator of mayhem in picture settings.  Usually by lunging for her sis and saying “Ticky ticky ticky!” while wiggling her fingers.
 

Here’s the best one of that session…


These are from a little photo shoot brought to you by Julie’s purchase of three coordinating sleepers for Braska, KiKi, and Jack
sisters2 sisters1 sisters3

And these are from Sunday morning, dressed for church in their beautiful fancy dresses.


Finally, my favorite of all, so far.  

Can you see my favorite little part of this one, besides that it’s just adorable?  It will be treated to some fun photo editing and layout work as soon as I get time.  I’ll share the end result when it’s done.

Saturday, December 19, 2009

Bedtime beauties

They can look so sweet and innocent, right after making Mommy pull her hair out for the 10th time in the day. How is that possible?

These are especially for Miss Karol. It just so happens that KiKi has a coordinating sleeper. So pictures just HAD to be taken...








Thursday, December 17, 2009

Showers, falling again!

Today was a good day, though it started very hectic and stressful, it ended pretty darn well.  Time is short right now, so I’ll summarize and let M elaborate for you one part of it.

First, this morning, my friend Julie went above and beyond.  Not in grand measures, but in helping me with errands and surviving another one of my very frustrated times of hurried and over-busy stress.  She has a great way of making things work out, and the stress was calmed  in short order.  Oh, and Kinlee got fed en route to other errands…also a very key element to the story.

Then the girls napped at the same time.  Nuff said!

The big news today is that M’s group at work surprised him at the Christmas lunch with an overwhelming gift extravaganza.  When he showed up at home with it at 5pm, needing wonderful little elves to help him bring it in the house, I was caught off-guard and very moved.  After a moment or two looking at everything, I just sat speechless.  It is truly beyond anything I could have imagined.  M gives a wonderful recount here, so hop over there and take a look and read. 

IS dept, if you’re reading….  you have blown me away with your thoughtfulness.  Thank you so very much!

And then to top it off, we received our Christmas gifts from one very special relative, two new cell phones and a MUCH cheaper plan, all part of the Gazelle progress (yep, Dave Ramsey all the way, for those of you who wondered).  Very cool!!!  (If you didn’t get an email with new phone numbers but you want them, drop me a note.  braskasmom at gmail . com)

M and I sat in the middle of the floor last night with all this food around us, the gifts for the girls, and all the rest and we talked of how strange it is to be on the receiving end of this.  We were both teary, talking of our journey, where we’ve been and where we will be soon. We will not forget these gestures and very generous outpourings! We are SO grateful!  There are many even more in need, far more, and we hope they are having showers of blessing too.  We’re doing what we can to be part of that rain, also, every chance we get.

Wednesday, December 16, 2009

Bye Bye Li’l Mazda 3

Sold. 
3side

One-car-family, schedule juggling, pick up-drop off, pick up-drop off, here we come.  But no more car payments—here we are!

More soon on the down and dirty (sometimes painful) of our new financial planning philosophy, for those of you who have asked.  If you have particular questions, feel free to leave them here and I’ll address them each one.

And once again, thanks to my parents for the Christmas in July gift of the minivan.  206,300 miles down, many more to go.

Monday, December 14, 2009

Christmas backgrounds

There are festive (to varying degrees) background blog layouts on the girls’ blogs and this one… if you like that kind of stuff, take a peek.

I’ve got alot of things (elements, cute art) that haven’t been used yet, in this department, so if you want a quick one-of-a-kind background, let me know.

Merry CHRISTmas!!!

Friday, December 11, 2009

Showers of blessing

If you grew up in church, especially protestant and midwestern, you probably know the song “There Shall Be Showers of Blessing.”  It was an upbeat, happy song, one I sang for all my years growing up, and I probably knew all 5 verses at one point in my life. 

There shall be showers of blessing,

Oh, that today they might fall…

This was a favorite phrase of mine, in verse 4, I think.  I look at it now and I like that the whole song was asking, and even believing that showers of blessing would fall, but it wasn’t assuming that it would be today.  Yet in this section, we would all sing in agreement that it sure would be nice if it were today.

Well, today we received showers of blessing.  I can’t come up with a better way to say it.  Though, the truth is that we’ve been receiving some good sprinkles the last couple weeks. 

One day it was a card with some cash from a “Secret Santa” at M’s work.  Humbling.

One day it was a couple of gift cards from the Secret Sisters at my MOPS chapter.  Encouraging.

One day it was a gift card from a very thoughtful relative who picked up on a way to sweeten my days.  Amazing.

One day it was another relative sharing a gift card they received and didn’t need. Exactly what we needed that day for necessities. Perfect timing.

And on and on.  

People have been so very generous these past few weeks, and we’re blown away.  We have honestly been speechless as we open cards and see these gifts.  I’m so very touched by the thoughtfulness of people.

In the midst of all this, this week has been discouraging in many ways.  I’m having a hard time with things in my head and keeping a proper attitude of holiday spirit and thankfulness for all that we have.

But today….today I almost collapsed.  I got the mail, began to open it as M was home for lunch. And I stood silent and stared. I turned around and looked at him. No words.  In my hands were 8 gift cards. EIGHT. From 3 different places that can provide us daily-use items.  It came from our church, simply with a card that said Merry Christmas.  The cards total enough to buy our groceries for 2 whole months. 

Totally overwhelming.

Our church has over 3000 people attending regularly.  I don’t know how they were given our names, and honestly, it is still a little hard for me to believe we’d ever be on one of “those” kinds of lists.  And yet, I don’t want to take away from the generosity of those who have given by being embarrassed. 

We are where we are.  Simple as this is, it’s been so very tough for me to accept and acknowledge without disclaimer.  We are doing everything in our power to live within our means, no matter what that looks like each day or how “against the flow” it may be.  We do have many people in our lives who are so generous, and we do not take one bit of that for granted. 

I look at these gifts as God’s way of saying, “Keep it up, you WILL get there.   You’re on the right path.”  I’m appreciative of those in our life who continue to encourage us, who can see how our lifestyle has changed and know that it’s a difficult adjustment, yet they acknowledge the tough choices we’re making to do what we know is the right thing for our family in the long run.

I praise God for how he’s provided.  In a million different ways, from gifted minivans to gifts of time and free babysitting to gift cards to QT.  They are all SO very valuable, and we receive them knowing that no matter who signed the card or purchased the gift, they come from our Lord through the hands of those who have made themselves available to be used by Him. 

There shall be showers of blessing

This is the promise of love

There shall be seasons refreshing

Sent from the Savior above.

So if you’ve had a part, whether we know your name or not… Thank you.  Thank you. Thank you!  Our deepest appreciation goes out to you.  And we intend to keep giving to those we are brought in contact with as well… for this is the way God intended us to live:  Giving sacrificially and receiving gratefully, always looking to give again.

Tuesday, December 8, 2009

Lily’s Auction

Michelle and Brian at The Zoromski Chronicles are in the process of adopting Lily, from Eastern Europe, who they found via Reece’s Rainbow.  Their little Ruby is one of my favorite little blog princesses, along with brother Braden and sister Karly, and I was so excited to see that the were taking this big step to bring another princess home to add to their family.

They are hosting a blog auction at Lily’s blog, and there’s some good stuff there!  They’re going to even get the things to the winners by Christmas.  So go take a peek and see if there’s not something you could bid on and get a great deal and help a very cool family bring a precious girl home quickly!


Grab This Button

Monday, December 7, 2009

Wanna grant a wish?

I saw Bethany refer to a website called Wish Upon a Hero, so I thought I’d check it out.  In about 10 minutes I’ve already come across a couple wishes that I can “grant” with things I’ve been needing to get rid of anyway!  How perfect is that!

Since we’re not giving gifts this year due to our budget limitations, this is a nice little substitute for me.  I love giving, and it’s especially nice to give to people I don’t know and won’t be gushing over how nice it was that I shared with them every time I see them….because I probably won’t see them.  That is NOT to say that it’s not nice to be thanked and such, but sometimes it’s easy for me to get a little high from getting that pat on the back.  And I don’t want giving to be about me, it’s about the gift, unconditional and given without strings.  And this site seems to be exactly all about that.

It’s still weird to see the Christmas tree up with nothing under it (again, not that we miss receiving, but I miss wrapping the gifts to give) but I’m enjoying the idea that things I’m not even using anymore can be exactly what someone else is wishing for this season. 

So if you’re feeling like giving but you’re low on funds, check this site out.  You’ll be surprised what others wish for. You have the power to grant wishes, you just didn’t know it!

Friday, December 4, 2009

Snot: Parenthood vs. pre-parenthood

Ooey, gooey, globby, and nonstop. That's the snot that's been present at our house for over a week now, first coming from Braska, then KiKi. I do not like snot. But I surprised myself the other day with how nonchalant I can be when handling the ickiness nowadays.

Before becoming a parent, had I been put in this position, with two little girls leaving remnants of their goo on furniture and clothes and each other--well, I'd have politely, but quickly, abandoned ship.

--News flash!!! It's snowing outside!!! I just glanced at the window!! (Well just a few flurries, but still!) Woo Hoo!!!--

Ahem, anyway, it's funny now how I can catch it, wipe it, clean it, and repeat about 300 times a day. And when leaving the house, it's not so much, "Darn! I have snot on my shirt!" as it is "Gosh, is that too much snot on my shirt to be acceptable for this outing?"

Can anyone relate?

And it's like a celebration when a big sneeze produces alot of stuff, because that means we're getting it out of there. And when doing the saline drops 'n suction routine that happens a few times a day, well, it's like I'm on a mission and success is non-negotiable. I can tell from the sound the bulb is making if it's extracting copious amounts. And it makes me glad.

Ah, how far I've come.

Friday, November 27, 2009

And it only gets busier…

So much to write about. No time to write.

Braska’s 3. Alot of thoughts. Three years flew, but yet it didn’t. If you ask her, she’ll tell you it was a “happy burfday” and she’s “phree!”

The IEP. Came, went, and I’m glad. It was a big process. I probably made it bigger, but I’m pleased with how it all went, and I’m not convinced it would have gone so well had I not made it a big deal. But I’d like to document for me and for those of you who will be crossing that threshold soon. So much learned.

Finances. No one likes to talk about or probably hear about them, but we all live it. We’ve just this month implemented a very strict budget (like in a spreadsheet, no room for cheating), changed several things, and I’m still struggling to adjust. I thought it would come easier to me, but it didn’t. I’m blessed with a few little elves around who help me get through when I need a QT cappuccino fix for $1.28, because all such frivolities got left on the cutting room floor. And it’s almost time for would-be gifting season…

Fall. I love fall. And winter. Thanksgiving is my fave! Christmas used to be, but the inability to get gifts this year is kind of a bummer. NOT that I’m not thankful for every single thing we have, and that’s ALOT of things, but it does get me down a bit to have no shopping to do. I love to give, but this year, I’m going to have to get creative and homemade--and that's not likely to actually happen. The girls will be well cared for from their extended family, even if I told them not to, and we don’t really NEED for a thing, so I’m not bitter. It’s just so fun to shop for others, to give things that make them *gasp* and “wow!” Soon enough, we’ll get back to that, I hope.

Movies. I live 3 blocks from a $1 movie theater. Though it’s not in the budget either, I found a buck and Joy and I went tonight to see Julie & Julia. Good movie, I thought. But why do they have to throw in one single solitary super-unnecessary F-bomb? It didn’t even fit. It actually made me sad, because I could have enjoyed watching it with people who would be very upset by that. It’s a cooking movie, people! It’s pretty much a chick flick. There’s no great drama, no action, no real tension…SO unnecessary.

Enough. I’m late for bed, and I need the sleep. I hope to be able to let the writing juices flow soon… but who knows.

Have a good weekend!

Thursday, November 26, 2009

Thankful, and teary…with joy!

I can be grouchy and I can whine with the best of them, but I have much to be thankful for and I make a point to spend time thanking God EVERY morning and EVERY evening for the things in my life, not all good things, but things that bless or teach me in some way.

This morning, though, I’m amazed at his provisions for another family and for a little girl. Many of you have undoubtedly heard of Darya and the mission of 11-year-old Lydia on her behalf. A little girl determined to rescue her new little sister and bring her home. Her mom agreed to adopt Darya if Lydia could raise $20,000 in 8 days, by today! And she DID IT! Far over $20,000 in fact!!!

Go read the story and announcement of success. Really, do NOT miss this chance at seeing truly what giving is all about. I read it to M this morning and got all choked up. First because little Darya is in a place where she is not even held or spoken to. How wrong is that?!? But mostly that she will be coming home. She has a family who wants her and will be going to get her very soon!!!

God will do more than we can imagine if we will do what he asks when he asks, get out of his way with all our limited-ness and doubt, and let him show us.

Happy Thanksgiving! We remember the “thanks” usually, but don’t forget the “giving” part!!!

Friday, November 20, 2009

Scrapping for good

I enjoy digital scrapbooking alot.  That’s how I do the backgrounds, headers, and fun picture alterations, etc.  But it’s even better when I get to do what I enjoy and it benefits someone else.

I’ve mentioned sweet Laynee a few times, and I hope you’ve all been to her blog to see and read about her.  Her smile is more than worth your time, and her mother has a beautiful way of painting pictures that allow you to see her daughter as if she were right next to you. 

This week, I worked with Karol, Laynee’s mom, to come up with a little makeover for her blog to represent Laynee in a special way.  I’m working on a few more now, that highlight different things about her, but she chose this direction first, and I so loved working with it.  It’s humbling to do something so fun on my end that will bring a smile, though possibly including tears as well, to a dear friend that I’ve never met.  Karol, I’m truly honored.  I wish there were a better word, but that’s all I can come up with.  Honored, indeed.

Tuesday, November 17, 2009

Not our best fashion shoot

It went from bad…


To worse… at least for KiKi.

It’s too bad, because they looked so cute in their little matching outfits.  It could have been a quality shoot.  But something upset Kinlee and she was not to be consoled.

This was also the night I tried my hand at making hair bows.  The girls have bunches, but it seems they never have just what I want at the time, and since Braska often needs two, we’re sometimes limited in our choices.  So I bought some things a while back to try it out, make some simple things, but I never got to it.  Then this week as we were getting dressed for an event in the evening, I had nothing for Braska that was just right for her outfit.  So—with 30 minutes til we left the house—I pulled out the bag from Hobby Lobby and grabbed the lavender spool.  I found the hot glue gun in the basement storage and get it heating.  With a quick flip and flop, twist and turn, a bow was assembled, and I stitched it quickly to hold it in place.  Glued to the bare metal barrette and added a little piece on top to hide the work underneath.  Got two done in under 20 minutes and still got out the door (almost) on time.  Not bad for a first try, I think.

Monday, November 16, 2009

Yes, it's shallow and ridiculous

BUT if you just feel like something shallow and ridiculous for a moment of silliness in your Monday... click here.

Ah, the good old days... I could have been so "popular!"

Thursday, November 12, 2009

One very precious angel

laynee

That beautiful little face has found a home in my mind in a way that few have.  Little precious Laynee.

Jalayne Grace.

A couple months ago, I posted about an accident that I’d read about that day on one of the DS forums.  I didn’t have much info at the time, but I was struck by the story in a way that surprised me a bit.  I remembered the precious face, and it hurt to even think about such a situation happening to this family.   

I never had the chance to know her personally or see her giggle or watch her play with her siblings and cousins, yet I miss her in an almost palpable way. Recently her mother has started a blog to share their story, to talk about her sweet daughter, and to understandably grieve this new emptiness where such a joyful little girl once lived.  I’m riveted by this blog. The honesty with which Karol shares, the pictures of little Laynee—it is not hard to spend time there.  There is obviously sadness and remembering, but there is always a tone of hope.

In these last couple of months, I kept feeling like I wanted to do something, but my words often betray me and I don’t live near enough to be physical, tangible help.  So I’m very honored to have been able to assist with a little blog help, and I’m working on a background/header to properly show Laynee’s love for her family, hee hee’s (horses), moo’s, and bawk bawk’s (chickens), as well as recognizing the family’s deep faith.

Several of you have been praying for this family since we found out about the accident, asking if I’d heard anything, so I asked permission to link to the blog, and Karol graciously agreed.

Take a moment to visit Loving Laynee, read from the beginning, enjoy the adorable pictures filled with smiles and silliness and personality.  I do so deeply wish that I’d have been privileged to know dear Laynee.  She sounds SO much like my Braska, it’s amazing at times. Please continue to pray for this lovely family as they walk such a difficult path.

And once again, be sure to get in an extra hug or two with your little ones today.

Wednesday, November 11, 2009

9 years down…

anniversaryheart

For our anniversary (today), we went to a comedy club on Saturday where a favorite of ours was performing. John Heffron.  He won Last Comic Standing, season 2, and his stuff is just funny.  It was a tad less PG, but still really fun! Thanks, babe!

Friday, November 6, 2009

Friday night fun, a.k.a. ER trip

Spent the night at the ER with M writhing in pain. I’m exhausted or I’d tell you the whole story.  The short version is that he’s now feeling better thanks to pain meds, he has kidney stones, (One is 5mm!! Several more behind it too.) and the pain will probably return as this all continues on.  Yay.

Overall it wasn’t a bad trip.  I mean, for me.  I read a book and relaxed.  He hard time til the meds kicked in, but then all was ok.  CT scan and all, we were there a little less than 3 hours.  So I missed a Girls Night Out event…no biggie.  There will always be next month.

Let me mention, woefully inadequately, that my friend Julie (Jack’s mom) has just gone above and beyond lately.  She kept the girls this morning while I had Braska’s first of two IEP meetings, shared her yummy sandwiches for lunch, and we dropped them off in a hurried fashion tonight as we went to the ER.  And that’s all in one day!  She has fished me out of more than a few binds in the past few months, and I really appreciate it.  Spread the word, Julie rocks! (And the rest of her family, too. :o)

G’night.

Need some blog links please

Can you share some links to blogs you know of with babies with DS 6 months and younger?? Anyone? And anyone know of DS bloggers in Louisiana, especially southern La?

Spread the inquiry around a little and see if you can assist me with this one. Thanks!!

Wednesday, November 4, 2009

Loaded question—Prenatal testing

A student working on a project on Down syndrome in college posed a question yesterday on one of the forums I frequent.

What would you suggest for someone else who is going to have a baby? Would you suggest that they get the amniocentesis or any blood work directed towards finding any potential problems or was it just easier not to know?

And this was my response…  I know this is a controversial topic, but I wanted to share my perspective.

This is quite a loaded question, in most circles, but I'll answer as honestly as I can.  I didn't know prenatally and I'm very glad that I didn't.  For me, that is because my marriage was in a very fragile place, and if we'd have known this, I'm sure it would have been over before she even arrived.  I would not abort a baby for any reason, so when I was offered an amnio, there was no reason to do it and take any risk related to it. 

Even though we struggled with the first couple weeks of adjusting to all the news, I wouldn't trade that for the months of worry, unknown, fretting, etc, that I know would have come if we'd have known prenatally.  The time we had to adjust was helped in that we had a baby to hold and SEE and cuddle as we adjusted. She was "just a baby," not an unknown disability with problems and delays ahead of her.  That made ALL the difference, I firmly believe. 

I'm aware that not everyone handles this the same way, but I know without a doubt that we were blessed in not knowing, and every day since and because of her arrival, as well.

In an "ideal" situation, I'd love to see much less prenatal testing, because I do believe that the majority, by far, react to the information they are given based on that initial fear and emotion, and in doing so give up a child that they would love and treasure if they only had the chance to meet him.  If pregnant women could learn about DS, have the opportunity to read stories like those in Gifts and Gifts 2, as part of their education during pregnancy, then the "preparation" that so many desire would be there, and those who did not have a child with DS would be that much more aware of those they will encounter later on.  Increased awareness across the board, and inevitably more precious babies allowed to be born...seems win-win to me. :o)

I know we don't live in "ideal."   I also want to stipulate that I know that not EVERYONE who gets a prenatal diagnosis aborts, but the current stats, as recently as this week, still state that over 90% of those who DO know prenatally DO abort their babies.  But the truth is that in all our desire to know and be prepared we still can't know what our child will be like, we can't know their strengths, what they have to offer the world, and how they will bless the lives around them, even through struggles.  If the parents do not know prenatally, information can be found, adjustments can be made, all kinds of options are available, even if they feel unable to raise the baby.  BUT if they do know, and in doing so if they decide that the fear and unknown is too much and they decide to abort their baby, that decision can NOT be adjusted to, changed, or reversed. 

So to me, the benefit of knowing is not worth the very high cost of knowing.

Wednesday, October 28, 2009

31 for 21: Hey parents, show me some speech, please!

Can I make a request of all you bloggers out there?  I’m trying to do a little personal research, and here’s what I’d love your help with…

Take a little video of you chatting with your child, toddler to teen or beyond.  This goes for all kids, but especially kids with DS.  Just regular stuff, like how their day was, what’s for dinner, tell about their favorite TV show, what do they like about the siblings… anything.  Just get them talking.  If you have younger kids, just starting to talk, even mimic words would be helpful.  Even if it’s only understandable to you at this point! 

Then post them and let me know that you’ve done so.  Please?  Thanks so much!!

Friday, October 23, 2009

31 for 21: Quiet week in review

It’s been a very quiet week here.  The girls have been at my parent’s house since Sunday, and I’ve spent 98% of the week lying in bed and/or sleeping, trying to rest this illness away on strict orders of my husband.  I got more than bored a few times, but I tried to comply.

Today I went back to the doctor, and he confirmed my suspicion that my illness (yep, that fun h1n1) of last week morphed into a sinus infection and that’s what’s hanging on and causing me trouble these last several days, in addition to the residual cough from the flu.   Antibiotics were started and--placebo effect or not--I’m feeling better this evening.  Unfortunately, it’s way past my bedtime but I’m suddenly unable to sleep, so I’m blogging a tad before returning to bed to try again.  Probably all that snoozing this week… rest overload. (huh?)

My birthday came and went, and as they tend to do by this stage, I suppose, it made not much difference in the days around it.  My sister did bring by some beautiful bright flowers and a cheery balloon, and today, my lovely friend Julie gave me an individual piece of cake that she bought for me, so I’d have birthday cake.  Isn’t that thoughtful??  I like to have a picture from each birthday for some odd reason, so here’s what I’m calling the mini-birthday summary pic.  Pretty flowers and yummy cake. And a goofy 36-year-old.

Tonight I had dinner with a couple college pals, but I’ll post a pic or two from that in the next few days.  Man, time flies, doesn’t it??

Tomorrow morning I go to meet Mom halfway to pick up the girls.  This weekend we’re doing a Trunk or Treat at the in-laws’ church, and we’re back in business for football Sunday again.  We had planned a trip to see our dearest KC buds this weekend (my birthday present/trip from M), but it wasn’t meant to be right now, so we’ll schedule it again very soon. (Very soon, ch!)

Have a good weekend everyone! Wishing you all good health and banishing of the sickie germs!

Wednesday, October 21, 2009

31 for 21: Fall blog background up

In all my time resting the last couple days, I did get a chance to do a new fall background for my blog. For those of you interested in that kind of thing, come check it out. I'm happy to share, change the header to your blog name if you'd like to use it as well. Just drop me a line...

Happy Fall, Y'all!

31 for 21: Remedy? Anyone?

So far this whole post-about-DS-thing is not quite working out.  Partly because I haven’t felt well for going on 11 days now, and partly because I just haven’t been able to formulate well what I want to say.  Oh well, I can keep trying. If it’s November before I get it together, so be it. 

The girls are at my mom’s this week, after I have just not been able to kick this remaining little pesky part of the sickness, or a different sickness, who really knows…  I’m down to a nagging cough and sore throat, but I’m still having trouble with energy as well.  The thought was that the girls would go visit Grammy so I could get a couple days of uninterrupted rest and really kick this thing. I keep thinking that everyday will be the last day. That FINALLY tomorrow will be my day of feeling good again… but not yet.  Hopefully tomorrow is the day…

If you have magical tips of great ideas, do share.

Tuesday, October 20, 2009

31 for 21: Down syndrome footprint

I came across this recently, and thought it was interesting… DownSyndromeFootprint.org

Check it out and share your thoughts. I’m curious.

Sunday, October 18, 2009

31 for 21: HealthCare Sarcasm

From an email I got today…

---------------------------

clip_image001

Let me get this straight...
We're going to pass a health care plan written by a committee looking for compromises, passed by a Congress that exempts themselves from it, signed by a president who smokes, with funding administered by a treasury chief who didn't pay his taxes, overseen by a surgeon general who is obese, and financed by a country that's deeply in debt.

What could possibly go wrong?

----------------------

Friday, October 16, 2009

31 for 21: What’s in store for 36?

In 59 minutes, as tradition holds, even though the official entry time isn’t til later in the day, I’ll no longer be the nice, round, trendy age of 35.  I don’t know why it’s trendy, but TV characters aren’t ever 36, they’re always 35. But I digress…

I’m a romantic at heart, always believing that my fairytale will begin, glitter and all.  I always wish for some big magical event, some wonderful sunshiney day full of good things, smiley people, and lovely flowers lining every step I take.  Well, not really.  But something like that, maybe.  When, in actuality, birthdays aren’t a big deal around here, and that’s ok.  I hope someday we’re financially sound enough to do fun, lavish kinds of things just because it’s a birthday, but for now, we say “Happy Birthday” to the celebrating individual about 50 times throughout the day, and that suffices. 

In all fairness, we are doing something really fun next weekend that is supposed to be representing my birthday present, and I’m looking forward to it.  (Watch out LC and gang…here we come!) So it’s not like there’s no celebrating going on, I guess it just looks different at this stage in my life, this “season” as many of my circles have been referring to it lately.

Birthday or no birthday, I am very thankful for everything I have. I’m very careful not to take for granted how we have been blessed, and if I don’t get to go out to dinner on my birthday, well, that’s just not the end of the world at all.  As I sit in my home with my two healthy daughters and employed husband, I’ll still feel like I have gifts aplenty.

31 for 21: Awareness through Beauty

I did a new background for Braska’s blog last night, with her help, of course.  She is getting better about choosing between two options, so she likes to help.  And she must have liked what she chose because while I was working, as the elements were coming together on the layout, she said, “Oooh, pretty!”  It’s so fun to listen to her just come up with things like that.

Anyway, if anyone is interested, I would be glad to share the background (with your own little one’s pic instead of Braska’s of course) if you want to use it for this month or whatever.  The header is separate and can say anything or nothing at all.  Just puttin’ it out there in case…

And the “Down syndrome is… Beauty” image over there will be making it’s debut on a couple items, shirts etc, soon… if you’re interested in that.  I’ll put it in here too.

DSBeauty2

Thursday, October 15, 2009

31 for 21: Keeping the girls well

I apparently jumped the gun yesterday when I thought I was doing some better.  Last night the sore, swollen throat was back, and I had a very achy (head and body) night.  This morning, I felt like I was starting all over again….I’m so sick and tired of being sick and tired.

M stayed home again, still not 100%, and it was clear I wasn’t going to be able to take care of the girls, so he took a shift while I went back to bed.  I slept a couple of hours, but I’m still very uncomfortable.  Let’s hope the girls take naps at the same time, so I can sneak in more rest.

As far as Braska and Kinlee and illnesses… they seem to be really tough and well-protected naturally.  I’m sure they are more nutritionally sound than either of their parents.  With Braska on Pediasure for all her nutrition, she gets a perfect balance of all her required elements, and it seems to help keep her very healthy.  Even though “they” say that kids with DS tend to be sick more often with things like sinus infections, ear infections, pneumonia, etc, she has rarely been sick.  She’ll be 3 next month and has never had an ear infection, she had one treatment of antibiotics for a “suspected” sinus infection when we were leaving on a trip, and she has had a couple colds here or there, mostly just runny nose, but she never *acts* sick.  To be fair, she did have Rotavirus when she was 4 months old, and it was pretty bad, but it was due partly to nutrition issues at the time that caused her to be susceptible.

The pediatrician has told us repeatedly that Braska seems to be very good at avoiding illness, BUT she has also told us that when she does catch something, it will likely be a bad bout of whatever it is.  So we work hard to keep her from known exposures.  We still sanitize things like shopping carts and high chairs at restaurants, and she is not allowed to touch anything at the doctor’s office.  We avoid the “kid area” of the waiting room like it’s on fire.  For now, the doctor agrees that we have been fortunate to find a balance between keeping her TOO clean and unexposed, as some is needed to build up resistance, and being very smart and consistent about keeping barriers where they should be. 

Kinlee doesn’t seem quite as health-tough as her sister, but it’s hard to say at this point.  This week she has a bit of upper airway congestion, but nothing we can get to, just rattling heard when she breathes at night.  Overall, she’s done pretty well in her 8 months also. 

This week we’ve been constantly disinfecting, washing hands, wearing masks at times, being very vigilant about how close we are to the girls and keeping them from interacting with our germiest areas of the house, like our bedroom.

There may be a point when we can no longer keep them this consistently healthy, but we’ll do our best.  I am a bit anxious to see what will happen when Braska starts school 4 mornings a week next month.  But I’m not at all opposed to keeping her home whenever it seems appropriate.  I’m not at all a perfect-attendance-obsessed  mom.  We’ll take it as it comes and do our best.  What else can you do, really?

Do you have any tricks to keeping your kids well?  Does your plan of attack change with the seasons…being more careful about particular things during the fall/winter? If you’ve got tips, I’m open to hearing them!

Wednesday, October 14, 2009

31 for 21: Slow recovery

Man, this kicks over and over again, let me tell you. I thought I was feeling much better yesterday afternoon, then had another rough night, though not AS bad as Sunday. Today I've been up and down. Went to Bible Study this morning, because I really enjoy it, but was wiped out when I got home. This afternoon I've felt very dizzy again, as I did during the night, and just plain worn out. Hope this gets out of here soon. M's still in pretty bad shape too.

On the DS awareness note, since that's the whole idea of the 31 for 21... I'm going to try to get more Walk in the Park pics up on Braska's page today. In case you're interested...

Wishing you all a healthy day...

Monday, October 12, 2009

31 for 21: Boo on the flu

Late last night I started in with really strong shaking chills and they continued for about 4 hours through the night.  Along with the sore throat the day before, the headache, body soreness and aches, and a bit of nausea too… this was not a fun night.  About 4 am, M started in on the same path.  This is no normal 24-hour flu…at least it’s more miserable than any I’ve had. Ever.  It came on SO fast and SO hard.  Really horrible.

We went to the doctor this morning, which is saying alot…we’re not good patients and we rarely go, even when we should.  But we just couldn’t take a chance with the girls around.  Calls were made this morning and arrangements began to get the girls out of here asap.  It was handy that my youngest sister Julia was here overnight since my mom had watched the girls on Sunday for us and was returning on Monday for another reason.  Julia decided just to stay with us instead of making the trips home and back again.  She was able to watch the girls so we could go to the doctor this morning, then Rachel came when she got free from work later in the morning and took the girls to her place.  My mom got here shortly after that and did massive disinfecting and sanitizing, and we crashed and slept when we returned from the doctor visit, getting chest x-rays and lab work done.  She’s staying tonight to take care of the girls while we recuperate. We are feeling some better this evening, maybe it’s the Tamiflu, maybe it’s just taking it’s course, but I’m glad either way.

This is one of those times that I’m thankful we live here, once again.  We have back-up when we need it, and that’s important when we’re trying to make sure these girls stay well.  So thanks to everyone for jostling their schedules to help at a moment’s notice.

Wash those hands, people. Carry hand sanitizer and use it often.  I wouldn’t wish this on anyone… well, maybe one or two or three individuals, but that’s another story.  Here’s to good health returning soon…

Sunday, October 11, 2009

31 for 21: Vikings home game in St. Louis

Yeah, that’s what it seemed like.  There were more purple jerseys and hats and Viking costumes than any combination of blue and gold and white.  It was sad for the Rams. I can’t imagine how it would be to look around your home stadium and see more fans of the opponent than your own. Ouch.  I kept watching the cheerleaders and wondering how they could keep being all perky and bouncy when there wasn’t a soul in the place paying attention to them.  Or cheering at all.

BUT…

The afternoon was so fun!  I had a great time taking it all in, goofing off, watching the Viking fans…all.around.us.  I thought it was really fun!  Can I say fun again?  It was a very fun way to spend a Bears-free afternoon during football season.  M and I dreamt of the days when we will be so wonderfully financially stable that we can go see the Bears anytime, wherever they play, with great 50-yard-line tickets.  Know this, though… we kept our Bears fanship on the down low with all those Vikings around us.

Yes, it was demoralizing for the Rams.  Three trips into the red zone and all three times there were turnovers in the end zone.  I stood. I stared. I said, “Wow.”  And the several rows of Viking fans around us had lots of opportunities to share high-fives and fist bumps.  But they were part of the show for me.  Along with the hysterical Minn-e-so-ta accent.  (I do not know how to write it. But it was funny. It made me think of your old answering machine message, Randy.)

We took a ton of pics, so they’ll come along later.  For now, here’s one. It wasn’t our most photogenically pleasing day, but who cares. We had a good time!  Rach and Patrick thought we were a little giddy, I think, but they tolerated us graciously. Thanks to them for going, and thanks to Cindy for the tickets!!

(And thanks to my mom for coming up to watch the girls for us!)

mrk-rams

31 for 21: What? Go Rams?

We are headed to the Edward Jones Dome today to watch the StL Rams and the Minnesota Vikings. Our very wonderful friend Cindy gave us tickets and we picked this particular game so we could see Brett Favre in person slinging that pigskin around! (And it was nice that this is the Bears bye week anyway, so we're not missing their game...that would be unacceptable, you know.)

My sister and her husband, Rachel and Patrick, are coming along (though they're not Rams fans either...Go Patriots! For you, P!) and we're excited about some good seats and seeing some good football. At least on one side of the ball. Unfortunately, the Rams will likely lose miserably, but we'll cheer them today because Minnesota will go up over the Bears 2 games if (when) they win today.

So that's the plan. On the off chance something crazy happened, I just wanted to this be out there to mark my predictions. Bob's your uncle.

Friday, October 9, 2009

31 for 21: Stock up on Signing Time TODAY

Good news everyone!! The computer is back up and I'm so glad!

Rachel Coleman's birthday is today, and I know most of today is over, but if you hurry yourself over to the Signing Time Store, you can get some seriously good deals...35% off!

Check out Braska's blog for more info and a video from Rachel herself.

I just snagged some flashcards and a couple board books. Good stuff!

Wednesday, October 7, 2009

31 for 21: It figures

I'm out of commission...just when I need to be posting like crazy. Computer issues, power cord, actually. So be patient, and read some of the other blogs for a while.

Thanks to my dearest husband for sacrificing 4 minutes of precious computer time to allow me to share this info. And let me tell you, it doesn't come without a high price...interrupting his computer time. He only gets like, gosh, 18 hours of it a day. It's tough.

Sunday, October 4, 2009

31 for 21: DS or Down syndrome, What’s in a name?

Names are a funny thing.  I mean, in a way, names are as common as anything can be.  Everyone has one, sometimes two or three, and there are alot of them that are used quite frequently.  Some are unique, but it seems like that takes alot of work these days…people are getting more and more creative with names.

In our family, names are a big deal.  My husband’s name, though I generally refer to him as M in writing and sometimes in person, is Muncher. Yes, that’s his name. He’ll be happy to show you his driver’s license if you don’t believe him.  I have two daughters, Nebraska Larae and Kinlee Carene.  Not the most common names ever, we’re aware.  Usually they are known as Braska and KiKi.  In blog land, I’m known as RK, and many people in my face-to-face life call me that as well.  My name is Randa (pronounced ran-duh, not ron-duh) Kay, usually used with a hyphen—Randa-Kay—because I’m not a fan of Randa by itself. (Long story, not one that the blog will be carrying.)  I have a sister I’ve called by her initials for most of her life, there are others in my family who have been known by nicknames most of their lives and have started using their given names, and there are also cases of the opposite—choosing to use a nickname over a given name.

A name is a common thing, but it can also be a sticky subject with some.  Some of us get very irritated by our name being used or pronounced wrong.  How we refer to a person often is viewed as an important consideration to that person. It might not make sense to me how someone else wants to be addressed, but it’s not so much up to me as it is to them.

Most of you are familiar with how Down syndrome got it’s name.  (Short version: The guy’s name is Down. It’s not a descriptor or a direction, in this case. FYI.)

There is alot of talk, it seems like constantly, about how people with DS are referred to.  There are lots of “don’ts” about what is *not* PC and is, therefore, deemed unacceptable to most. This is not really about that. But for the record, if you want to avoid upsetting most people, using people-first language is the key. Basically, instead of saying Braska is a Down’s child or “She is Down’s” or speaking of “Down’s patients”, the acceptable way to say it is to say that she HAS Down syndrome, etc.  It’s trying to put the person before the condition.  I appreciate the idea, and I try to keep it in mind to use in group circles, but I mess up and that’s just honest.  As I’ve stated before, it’s not something that resonates with me or upsets me, so I don’t give it a big portion of my brain. But I do try to be respectful of those who feel strongly about it, and that’s fine.

Anyway, all that said—the point here is that I’m often amused by listening to groups of people within “the community” talk when we get together or post on boards or whatever.  There are some people who ALWAYS say “Down syndrome” every single time they need to refer to it.    There are some who mix a little abbreviating with “DS” into their vocabulary, alternating the uses depending on the context, I guess.  Then there are some who practically never say the whole name, only the initials.

That’s me.

I’m all about shortening everything all the time, as far as acronyms and initials and nicknames, etc.  This is why I’m RK if you ever see anything from me in writing.  I can’t be taking time type out all those other letters! Life is short!  Ok, so maybe it’s not all about that, but it’s true that people have preferences for things, and I’m sure there are reasons.  I prefer DS, and I so rarely use the full “Down syndrome” in conversation, written or spoken.

It’s not that I’m denying what it is, as someone asked me.  Not at all.  I love having a license plate frame that alerts to our extra-chromosomal princess, I can tell anyone that I work with our local DS group or that I spend alot of time talking to new moms who are dealing with diagnoses. And when I’m in a setting where people won’t know what “DS” is, I do use the full name.  I have shirts that mention DS in it’s complete verbage, and I don’t mind at all.

But when I’m in a group who all can tell me exactly what DS, PT, ST, IEP, IFSP, AAI, NG, and so many other letters are, I don’t ever use the full name.  Just seems repetitive and unnecessary to me.  And as much as I like words—and I really do—I don’t like to use them when they’re not required in that situation.

The way that adults with DS choose to be addressed, besides their given names, is varied, I have found.  There are those who will say they are a person with Down syndrome. There are some who say they “are” Down syndrome—like, “I’m Sally and I’m Down syndrome.”  It was a common practice not long ago, and I’ve met many who prefer it still. (They’ve explained it to me as similar to “I’m a girl,” or “I’m Asian.”) We know a couple who call themselves and their peers “Downsy” or “Downies.”  I know dozens of parents who would cringe at someone calling their child this, which is understandable I suppose, but those who are old enough to make the choice for themselves opt for those names, so I don’t have any problem with that.

As I’ve mentioned before, we affectionately call Braska “our little Downsie” and we’re proud of her for it.  It is a name her dad gave her completely out of adoration—he could not be any prouder of her, all 47 chromosomes.  We never ever try to keep the fact that she has DS from anyone, either in person or otherwise.  I’m proud to say that she has DS and I’m proud of every part of her, related to DS or not.  I’m not afraid of saying  “Down syndrome” but we just use the initials almost exclusively.

What do you say?  Do you find that you have a particular habit of using the initials or the full name?  Maybe you’re into T21 or Trisomy 21 instead?  Why do you choose that particular term?  Do you have any particular name quirks or issues with your given name or nicknames??

Really. I’m curious. Do share!

Saturday, October 3, 2009

31 for 21: Walk in the Park, part 1

Today was the annual Walk in the Park for the DSAGSL. We had a great team for what little effort we put into it. (We’ll do better next time! It was kind of thrown together on our part.)  Most of the family was there with us, and we really appreciate them coming out on a windy, chilly day!

We’ve got a bunch more pics, so that’ll come soon.  Our buddies from C-U also came down for it, so check out Jen’s post at ReJenerationS to see pics from their perspective.

Friday, October 2, 2009

31 for 21: Cheer!

Ok, people…football fans far and wide.  It’s time to cheer your team!  So many of us are loving this time of year with football season in full force! (Go Bears!!!)

My friend Missy has come up with a GREAT idea, and you’ll hear more about that soon.  But in the meantime, I need to see pics of your cuties in their NFL wear. Obviously, Bears-wear is the best, but we’ll accept anything. Ha!  We’re going to put this together and see if we can get some sports-related awareness going!

Email pics of your little ones with DS (with their siblings if you like!) in their football cheering stuff to braskasmom at gmail dot com.  And stay tuned to see what fun stuff comes.  And PASS THE WORD!!!   Post on your blog for others to follow… it’s all about DS awareness, and it doesn’t hurt to get to cheer on your favorite team in the meantime! (And if you have football-fan friends who don’t have blogs, let them know too!)

If you’re more of an NCAA fan, then send those on too. Maybe we can REALLY get some notice out there!

ETA: Here’s Violette…her mom suggested this!

We’re already getting pics! Fun! Keep ‘em coming!

Thursday, October 1, 2009

31 for 21: Year 3

I can’t even tell you how unprepared I am for October and fall and my birthday and Halloween (which means great holidays follow) and cooler temperatures, etc.  But one great thing about this month is Tricia’s brainchild, 31 for 21. (Let me just admit, I always call it 31 for T21 even though that’s not it’s name.  If I goof, I’m sorry…just letting you know now.)

Get It Down; 31 for 21

(Here’s a list of other bloggers participating, if you need some good reading material!)

If you’ve been around for this before, you know the drill… it’s in honor of October being Down syndrome awareness month.  We bloggers far and wide opt to commit (with fingers crossed) to blog each day in October (31 days) for DS (Trisomy 21), though not all posts have to be all about DS, of course.  It’s awareness, people…getting the word out there that this is not some kind of horrible, sad, cheerless life we lead when DS enters the picture. 

Not sure yet which direction I’ll go with this line of posts this month, but I’ve got some thoughts.  I’m praying that I can find the time to get some things down that I’ve wanted to hash out for a while.  We’ll see.

Anything that you’ve always wondered but didn’t get up the nerve to ask??  Something you’d like to know (about DS, Braska, g-tubes, toddler fashion, great books on CD, transitioning to minivan life) but don’t think it’s “nice” to ask those things?  I’m your girl… let’s have it. 

Monday, September 28, 2009

E-mealz

E-mealz. I just heard about this today from a friend of a friend, so I've been sharing it with a few people who I thought would find it especially helpful. But I thought I'd just throw it out there. It looks like it could be a pretty great tool to lessen mealtime stress and spending!

In summary, it's a website that will give you a meal plan (with recipes) each week along with a grocery list for that meal plan based on the store you choose (there are a few specifically and then generic ones too) and using the sales for that particular time! How cool is that?!? And they have an Aldi list, too, which averages around $30 a week to feed two people. $30!! (They have family plans too.) It costs $5 a month to subscribe, but it's pretty clear to see that it pays for itself pretty quickly.

They also have specialty plans, for particular diets and such, like one that gives the Weight Watchers points for the meals. All in all, it sounds like something very interesting, and I'm going to check it out. It might not work at our house...with a certain excessively picky eater (and it's not Braska, me, or Kinlee!) but who knows. Maybe I'll try it anyway!

Anybody used it before?

Thursday, September 24, 2009

One very neat young lady

I saw this on one of the DS forums. I'd love to meet this girl for tea and have a chat.


Tuesday, September 22, 2009

Great article: Seen through loving eyes

Beverly Beckham writes for the Boston Globe and has many wonderful articles in her archives.  Sunday, she had another winner, called Seen Through Loving Eyes.   What do you think? Have you had similar experience? Share your thoughts in the comments.

_______________________________

My granddaughter Lucy is six years old and is part of a class of people that is quietly being eliminated in my country. She has Down syndrome, a genetic condition that frightens so many women that 92 percent of those who learn they are carrying babies with it choose to abort.

Dr. Brian Skotko, a genetics fellow at Children’s Hospital, fears this number will rise. Prenatal tests are invasive, carry a risk to the fetus, and are given in the second trimester, so many women choose not to have them. But a simple new and non-invasive blood test, to be given early in a woman’s pregnancy, is coming, perhaps as early as next year.

“As new tests become available, will babies with Down syndrome slowly disappear?’’ Skotko ponders in a soon-to-be-published article in the Archives of Disease in Childhood, (a British medical journal) available online now.

It’s easy to understand why parents fear a diagnosis of Down syndrome. You Google definitions of it, and even now archaic words and misinformation pop up. It’s the same in doctors’ offices. Pregnant women are told only the negatives. Old stereotypes linger.

My granddaughter cannot do all the things that typical kids can. She doesn’t come home from school full of stories. They may be in her head, but we can’t see in there. She speaks and sometimes we don’t understand. She can’t make a teddy bear with paper and glue, not without help. She can’t understand why her grandfather would rather watch baseball than Shirley Temple. She does not have the same skills and abilities that her 5-year-old cousin Adam has.

But Adam doesn’t have the skills and abilities she has. He doesn’t always enter a room and greet everyone with a big smile. He doesn’t always leap to his feet and race to his father when he comes home from work. He can’t sit for hours in a fancy restaurant or through a long movie. And he doesn’t know instinctively when someone is sad and needs a hug.

He can field a ball and she can work a room. He sings a whole John Denver song, and she sits and applauds.

This is what doctors don’t tell mothers having babies with Down syndrome, that you will see in your child amazing things that you won’t see in ordinary children.

Of course, parents want healthy kids. And some get them. But children get sick. They get in accidents. They lose limbs. They suddenly stop talking one day.

Children in wheelchairs, on ventilators and crutches? Children hooked up to IVs getting chemotherapy? People on waiting lists for transplants? People with chronic diseases. Soldiers changed by war. Civilians changed by an accident.

They weren’t born this way. But if there were a test that showed their future - that showed diabetes and cancer and autism and muscular dystrophy and mental illness and depression and alcoholism - would women take it? And seeing what would be, would they choose to abort?

Last week we took Lucy to Davis’ Farmland in Sterling, where we played with the animals. Then we went to a wine tasting at Nashoba Valley, where Lucy drank juice and shared our cheese and crackers and enjoyed the day.

All kids with Down syndrome are not like this. But this is Lucy. She makes me notice the ordinariness of people who don’t have it.

In the play “Cabaret,’’ set in Berlin as the Nazis rise to power, a man loves a woman he’s not supposed to because he’s Christian and she’s Jewish. He tries to explain his love to his friends. And because “Cabaret’’ is a musical, his explanation is a song.

“If you could see her through my eyes, you wouldn’t wonder at all. If you could see her through my eyes, I guarantee you would fall, like I did. . .’’

Like I did. Like Lucy’s mother and father did. Like all the people who know Lucy and people like her did. Like the world would, too, if only given the chance.

Monday, September 21, 2009

Some answers for our normie

Just got back from the dr's office with KiKi. She has blisters on the back of her throat. Well, whatta ya know?! Something IS wrong! I'm relieved in a way, because this whole deal of the unknown is the most challenging to me. Dr. A also gave me a script for lactulose to help with her constipation too. Braska had this issue and did well on this med, so I'm glad she agreed to try it for Kinlee. Hopefully, if we can get those two things fixed (just pain support for the blisters) then maybe Happy KiKi will return.

I keep meaning to do a full post on this, but I'll just state it for now: "Everyone" seems to think kids with DS are hard work, but Kinlee is WAY more difficult and more exhausting and more frustrating than Braska has ever been in her almost 3 years. That doesn't mean we don't love her and enjoy her differences, of course, and there are rewards, but for the record, normies are no cake walk either in my book!

(Just to clarify our "normie" and "Downsie" terms... they are terms of affection given by M to the girls. Nobody is claiming they're PC, but if you've been around us AT ALL, you'll know that's not really a forte of ours anyway. So don't be upset... I kind of see it like calling a roly poly baby "chubkins" or "our little Michelin baby" or whatever. There's only love there, people. )

Divorce and Down syndrome

Jeffrey Pomranka, the COO of the DSAGSL, wrote a letter to the editor of the Post-Dispatch that was recently published.  It was related to the popular story from last month when a fan fell over the wall at a baseball game and was assisted by Albert Pujols.  The fan had a son with DS.  Jeff’s letter is well worth the read.  Click here for the letter and Jeff’s explanation.

I don't cotton to this, no thank you

It's possible that I am not meant to parent a "normie," as we call them affectionately in our house. A typical kid. One with 46 chromosomes. The regular kind. However you say it, and no matter how cute she can be at times, Kinlee is pushing my buttons in ways that drive me to the edge so quickly.

Something is up with her lately, and I'm so fed up with trying to figure out what it is. For the last week or so, she's been getting up again at night. Two--sometimes three--times in a night. Waking and screaming. I give her a bottle, she takes about 3 oz and restlessly goes back to sleep. In about 3 hours she does it again. She won't eat like she was doing before, bottles or baby food. She fusses all the time. It's a whiny, grunt/growl, complaining thing that wears on my nerves like I didn't think was possible. She won't sit still for the world. She must climb on me, stand in my lap, turn around, sit down, and do it again. All the while whining and being generally uncomfortable.

I can't tell if she's hurting, or if she's bored, or if she is tired since her naps are also all screwed up. Last week we had an insanely busy week, with appointments and events every day, several a day. Maybe she's just off her routine? But this seems excessive for that situation. But what do I know? All I have to compare it to is the easiest kid ever, always pleasant (99.9% of the time), self-soothing, pleased to have company or be alone. Braska is a breeze. Maybe Kinlee is sick. Maybe she's uncomfortable, because she also hasn't been having dirty diapers nearly as often. I just don't know and it's driving my crazy. She wants Mommy alot, but when I have her she's still unhappy and so restless and whiny, once again.

M was very good to take the girls with him to visit his parents on Saturday. I got alot done and I felt so much better. But when Kinlee got home she was a mess. She wasn't as bad while they were gone, but still not her happy self. Then yesterday we were down there again for football and she did ok, but still a bit weird at times. Then last night, up twice again, not wanting to go back to sleep, thrashing around. SOO frustrating. I'm spoiled, I know it. But knowing that doesn't help me either.

Maybe I'll take her to the doctor today just to check her ears/throat/etc. She has been messing with her ears some, but she has done that since she was born, and they've always been fine. Maybe it's a combination of everything, but if that's the case, what in the world am I supposed to do to fix it? Stay home and let her "reset" for a week or so? I want to help her. I want her to be happy. I want to be sure she's not actually needing something I'm missing, but this is hard.

[Just before I hit publish, she woke up, playing in her bed, smiling, but with a VERY crusty nose. After some un-fun cleaning of the nose, she was fine, went in Braska's room to play with her for a few before we take Braska to school. Seems fine, but how long will it last today... Any insights??]

Tuesday, September 15, 2009

Feeding this baby--What and how much?

Ok, all you moms with littles... I've never had a kid that eats before, so give me some help.

What do you feed a 7-month-old?
What's the progression from cereal to baby food to _____ look like?
How does the balance go between milk/formula and "other"?

And don't give me the "oh, you'll know...she'll tell you." I don't work that way... need some specifics here!

Thursday, September 10, 2009

Our worst fear

Today on one of my DS forums, a very small forum, one of the mothers posted that her precious little girl--only 2 months younger than Braska--"went to be with Jesus" on Monday after a "terrible accident." I Googled the little girl's name and found an article describing the situation. (I won't link for privacy purposes. They are not bloggers.) Little J was outside with her family while they were washing cars in the driveway. They noticed she was not right there with them, and they soon found her in their pool in the backyard, but it was too late.

It makes me physically sick. I can't even begin to imagine the pain and horrible darkness that this family is dealing with. The mom mentioned that the oldest daughter, a teen, is struggling with being there when they found the toddler and blaming herself.

I often fear accidents, I think about them more than I should. I pray for protection, for my own instinct and wisdom to keep them safe. But life on this imperfect earth comes with heartache. And oh my goodness, how their hearts must ache beyond comprehension just now.

For the first time today, I was thankful that we no longer have a pool, petty as it may seem. We've already experienced a fall down a whole flight of stairs, and that was enough to almost cause me to fall to pieces in a split second. I hope I never am given this kind of experience to prove my ability to get through it.

Please pray for this family. I'm pleading with God to provide them the peace that passes all understanding and to surround them with people who will be their strength when they have none of their own.

Hold tight those little ones you've been given. Every single day is a gift to be treasured. I need to remember that and live like I believe it.

Saturday, September 5, 2009

Oh happy day, Less question mark!

As a follow up to yesterday's post, I got word today that we will NOT be assigned to the new guy, but we will have an experienced coordinator after all. I feel SO much better.

I also learned some other info today that made me think I still have some kinks to work out, so I'll be taking care of that this next week.

I'll be SO glad when this transition/IEP stuff is behind us. I want to do the very best I can, but there's part of me who wants to just hide and let it all happen without me.

Friday, September 4, 2009

Trading a sure thing for a question mark.

I have mentioned before that our service coordinator with EI is the best.  And she is.  Or she was.  Today was her last day with First Steps, and I’m not anywhere near happy about it.  Sure, I wish her well, she’ll be a great asset at her new place and she’ll do a wonderful job.  The kids will be blessed to have her. 

But we’re less than 3 months from transition from EI to school.  It’s a BIG transition.  I’ve done my homework and I’m continuing to learn, but I was SO counting on her to make sure we got through it safely.  The timing is just so plain sad.

And, though I’m trying to be open-minded, our new coordinator is new to the First Steps system, and that is enough to make me not feel confident.  He’s probably very nice, he’s probably really smart, and he’s probably good with kids, but will he be full of experience and knowledge when I need it most?  We’ll see… I’ll hope so. I’ve just come to find out today that some that were in her caseload are going to a much more experienced person.  Since we’re transitioning in less than 90 days, it would have been nice to be in that crowd.

Thankfully, I’ve recently gained another ally in the process who I’ll be leaning on even more now.  I’m going to be setting up a meeting with her next week to touch base and get on the same page.  She’ll be involved with us for the next 3+ years at Braska’s school, so I’m looking forward to that.

It’s not the worst thing ever, it’s probably a really great thing for her, but still, I’m bummed that it will mean a less-than-smooth transition.  It’s selfish, I know. 

We’ll sure miss her, no doubt!

Thursday, September 3, 2009

It was HIS idea. Just to be clear.

M asked me to guest blog a recent adventure with medical procedures for the purpose of keeping further “surprise” babies from showing up.  I wish I had video of the whole experience. As his mom put it, it was “comedy gold.”

If you’re interested in the “Snip/Tuck” story, click here.

Monday, August 31, 2009

Moms who have had a CVS

Can someone describe the physical experience of having a CVS? Not the procedure itself, but how it felt first hand...did it hurt, what was your down time following, etc.

There's a mom on a forum who is wanting to know and not many of us there have had one.

Thanks!!

Thursday, August 27, 2009

Gotta love Albert!

Check out this press release about the new clinic for ADULTS with Down syndrome soon to be opened at St. Luke’s Hospital in Chesterfield (St. Louis metro area). 

I’ve known about this project for a while since my sister works for St. Luke’s (I call her my favorite big wig…I’m so proud!) but it’s new news that Albert Pujols has signed on in cooperation with this new clinic.  That is exciting!

pujolsswing

Many of you may know that Albert has a daughter with DS, and he has a foundation here in the St. Louis area, the Pujols Family Foundation, that does alot of things for people with DS and their families. They are very popular among the DS community in these parts!

How exciting is it to have an ADULT clinic designated for people with DS?!?  So many of us cherish our DS Centers for our kids, and it’s great to see a need noticed to focus on their health after they’ve “aged out” of the pediatric practice system.  Yay St. Luke’s!  Yay Albert!  Go Cards!

Tuesday, August 25, 2009

Been there, remember that

If you don't have Narrow Ridge in your reader, you should. Tom has a great perspective on many things, especially being a dad to Silvi and Ian, his little one with DS. He's working on a documentary about his son, and today he posted a piece that "got" him last night.



If you've been through the surgery of your tiny one, you will relate, and it will bring back many a memory, though it's beautifully simple in it's presentation. It brought back a surprising amount of emotion for me, as I remembered sitting and rocking Braska just before we walked her down the hall to hand her over to the nurse at the door to the OR for her open-heart surgery. She was 3 months old. Sometimes, I still can't believe it.

Thursday, August 20, 2009

Speaking of 18 years, OTW 2009

In the previous post, I talked of when I went to college, 18 years ago this past week.  That first weekend, during orientation events, I met Melanie.  We can’t seem to remember exactly when it was or how it was that we met, but she and her roommate, A, became my best buddies right away.  Mel and I had MANY an adventure, some side-splitting hysterical, and some not as much fun, but all of them were priceless in their own way.

That first weekend we coined a phrase for which we now just use OTW.  I won’t go into a whole explanation, but suffice it to say it was all about boys.  Anyone surprised?  I was 17…what else was there?  Several years ago,  Mel, A, and I went on a trip together, then another a year later, then another.  We called them OTW trips, and they were so much fun.

In between then and now, we’ve lived a few hours apart, but now we’re only 10 minutes from each other, so we’re enjoying getting to hang out more.  I’m loving being back on old stomping grounds and that Mel is back here, too.  Even our getting together for dinner or just a hang out chat is easy, relaxing, and fun.  We don’t get to do it enough, if you ask me!

We’ve not done a trip since Melanie’s son was very young, 5 years ago this month, so we decided it was time.  A no longer comes with us, but being a duo instead of a trio doesn’t slow us down!  With work schedules and kids and husbands, we couldn’t get a weekend on the calendar, so we took advantage of Mel having a day off in the middle of the week.

Tuesday night we headed downtown St. Louis to Lumiere Place to a room gifted to us for this little mini-getaway.  Here’s the hotel atrium.  (I didn’t have my real camera, just my phone…brilliant, I know.  But it’s better than nothing, I guess.)
OTWhotel

We checked out our super cool suite and dropped our stuff.  Then after a bit of primping, we headed over to the casino to investigate the restaurants.  We ate at a nice place, had a relaxing and totally non-rushed dinner, then we walked around a while to work off some of those calories. 

We decided to go into the casino area to just walk around and see what’s there.  Neither of us are gamblers in any way, shape, or form, but it was quite something to see and hear.  Of course, we had to experience it a tad, so we spent $5 on penny slots.  Big spenders, that’s us!

One of the machines we tried was called Wild Panda…so we just HAD to try that one.  See it in the background?
OTWrkmel

Here’s Mel’s big slot machine debut.
OTWmel1

And she ended up being much more successful than I was! 
OTWmel2

There was a little station of machines with Wizard of Oz characters and the super neat chairs.  Melanie is a big Wizard of Oz fan, so she stopped to take a couple pics with her phone.  A security guy gruffly told her she had to stop and that she had to delete the pics right away, while he hovered over her.  He said no pictures in the casino.  Oops, we didn’t know that.  And while they were busy deleting the pic off her phone, I snapped this one.  Daring rebel.  That’s me. 
OTWWizofOz

We decided we’d leave the casino at that point… no reason to hang around if we can’t document our fun with pictures!  We went and found another little place nearby and had a drink while we did some reminiscing of old silliness I had totally forgotten about.

We finally made it back to the room after midnight.  WAY past my bedtime.  I didn’t feel well during the night, and I didn’t sleep much or well.  That was a bummer because the beds were very comfy.  We had great views of the Mississippi River right outside our window, so that was neat to peek at when I was up trying to settle enough to sleep.

Wednesday morning we got up and checked out at about 11 am.  Then we walked around Laclede’s Landing only to remember that if it’s not night time and if you’re not hungry, there’s not much to do down there.  So we opted to head back out here to StC County and get our hair done. 

We were fortunate that my stylist—actually Rachel’s stylist that I’ve glommed onto—was free for a couple slots that day. I got mine cut first (It looked ok, not great, but I like the cut), then it was Mel’s turn.  In fairness, you should know that Melanie is way not into change with her hair.  It’s been very similarly done for most of the 18 years I’ve known her…though she still seems to look cute all the time.  I just look outdated, but I digress.  Mel has ALOT of hair, and Stephanie had some good suggestions about things to try.
OTWmelsteph

So after much work, including the longest blow-drying session I’ve ever witnessed, she was done and looking pretty darn smashing, I think!  She just couldn’t get used to seeing herself…it was funny!
OTWMelAfter   

We picked up her son at school, stopped at B&N for a snack and saying hi, then dropped them off at home.  All in all it was a fun, if short, getaway. 

Thanks for going, Melanie!  Biff and Sven say hello! (Remember, they’re under the bed!)  And thanks to M for keeping the girls and doing a great job at it!!

Sunday, August 16, 2009

Same. Different. 18 years later

Tonight I went to visit my sister and see her new dorm room.  She moved to college yesterday. She just decided to do so on Friday.

It’s weird enough that this sister, #4 in our 6-kid family, the one who was born when I was almost 16, the one who had just turned 2 when I went to college myself… it’s weird enough that she’s IN college.  It’s weird enough that she’s 20 now.  It’s weird enough that this is her second college, since she went last fall to a different school.  All that’s weird enough in my brain.

But tonight, I drove up the street that dead-ends at the college in my minivan with my two daughters in the seats behind me.  I drove onto the campus and pulled into a parking space.  And as I parked in a spot that overlooks the whole place, I just had to stop and digest it for a split second.

For it was 18 years ago this weekend, 18 years, that I drove onto that same campus in my 1989 Ford Festiva following my parents in the big orange conversion van.  It was so surreal.  In many ways, the campus is unchanged.  There are a few things that are different.  Very few. One big new building, some nice landscaping.  There is a sand volleyball court where there wasn’t one before. And let me say, that’s really the change I’d have wanted to be there back in the day.

In  August 1991, I was so ready for college.  I knew the campus backwards and forwards.  I knew most of the professors and staff.  I already had friends there.  Of course, there was a guy there I had hopes of catching, too.  (And I did, in short order, though short lived.  Not that it was a good thing.  But that’s another story.)  I was READY to go to school.  Happy to be there.  Eager to get on with college life.  And I felt a bit like I was already part of the “in crowd.”

You see, 24 years before I started as a student there, my dad was a young lad beginning his college career there as well.  Two years after his arrival, my mother showed up on campus also.  That story is one that is probably not uncommon.  Parents watching their kids attend their alma mater.  Siblings choosing the same school.  One of my brothers has attended this college as well, his first year after high school, which was my first year out of that same college.

The difference is that this school is a small Christian college.  And by small, I don’t mean like colleges that brag about a “small, cozy campus” of 4000 students.  When I attended, the entire student body was about 220 students.  Yes.  220. I didn’t forget any zeros.  I don’t know how many were there when my parents were students.  I know now they are having higher enrollments for freshmen, so I think they are currently a little over 300.

It’s not possible to attend a college that size and not know everyone.  That is good and bad.  It was great to have a big group of friends and basically no outsiders.  But there were days when I wished for the ability to blend in, disappear, or get away for a while.  It didn’t help that I was a representative of the college from my first semester through my last one, summers included, touring, singing, teaching, and promoting the school in dozens of churches and camps in several states.  That made it hard to bow out of the spotlight since it was my job to be in it.

I lived and breathed that place for 4 years and 3 summers.  And the night I graduated, I left as soon as I could walk to the car to head home.  I was done.  There are alot of reasons why.  My last two years, especially my final year, were not nearly the *total blast* that my first two were.  Life became complicated and sometimes dramatic, and I didn’t have the skills to cope appropriately.  And because of that, I left and didn’t return for almost 10 years.  I didn’t keep up with people.  I didn’t attend the homecoming event each year, and still haven’t.  Had I left after my sophomore year, I’d have been still a cheerleader for the college, happy to return and relive the good times.  But I didn’t leave then, and the fresher memories and experiences were not so sweet.   In the 14 years since I left, I’ve been back 3 times, well, 4 after tonight.  I’ve driven by the big sign on the interstate about 200 times, glancing up the road that disappears over the little hill that hides the campus.  I’m not sure what I look for each time.

So tonight, as I sat there for what was only 60 seconds in reality yet seemed like an hour, I looked over this place that was my whole world for a time and did not feel like I had come home.  That’s sad for me, and I hope that it won’t always be that way.  Going back is probably what I need to do to kind of start again, in a sense.

To start this new tour, we went to Joy’s room.  On a floor I lived on my senior year.  I laughed as I passed the kitchen and saw the furniture is still the same, at it was old when I was there.  There are two girls dorms, more like large houses really.  They are each 2 stories and have 12 rooms on each floor.  She is in what we called the “old” dorm, the dorm my mom was in when she was a student there, as opposed to the “new” dorm that was built some years later, though not recently, by any means. Sitting there in the lobby for a few moments, watching the girls bring in load after load of brightly colored bedding, armfuls of clothes, and electronic gadgets that didn’t exist back when I moved in, it was easy to remember coming in and out that front door a million times.  The sound of it slamming shut was so familiar.

We walked over to the “main building” as we referred to it when I was there, now the administration building, saw an old familiar face who was the youngest child of the coach and athletic director when I was there, a friend of our family’s, and now she is the admissions director.  I remember curling her hair at church camp one year when she had just turned 6, I believe.  Doesn’t seem possible.  Then we went across the drive to the new building, where I’ve only been once before, a few years ago.  I’m not sure how long since it was built, but it’s very nice.  There used to be a small house on that part of the land, it was the “music building” back in my day, a place I spent plenty of time in since music was my major.  It’s gone now, and in it’s place is a very large, pretty, new structure.  Change is often a good thing.

As I left, I backed out of the parking space and smiled to myself as just 3 empty spaces down from mine was parked a vehicle belonging to someone who began as a student there 17 years ago. He was a friend, a beau for a while, and then he married my BFF from college (who is sneaking away with me this week for a 24-hour husband- and kid-free getaway!). Now he is a professor at the school.  I just saw them this morning at church. I got to the little stop sign at the corner of the admin building and across from the new building, and I saw a group of people walking in, headed to the all-campus barbecue that was getting ready to start as part of orientation weekend.  In that group were new freshmen, some returning students, and there was my friend and with his son on his shoulders.  It struck me like a strange moment in time. He with his son, me with my girls, the old there with the new, ready for another year. Another year of space between the person I was then and who I am now.  Very VERY different, those two versions of me.

It will be interesting to have this interaction this semester with Joy there, being so close, making trips to pick her up and to visit for games or such.  I can’t say I’m completely looking forward to it, but I think it might be healthy.  We’ll see…