Blogging about life in Minnesota, raising our five kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Friday, May 28, 2010

The weekend

We're really over due for a 3 day weekend. With good weather, I might add! Our plans, you ask? It is spelled Y.A.R.D. W.O.R.K.

You see, last year we didn't do one darned thing in the back yard. Our back yard is AWESOME, except that  now it looks a lot like an overgrown, neglected mess. Like maybe someone used to care about those gardens out there. So that's what we're doing. Weeding, and seeding, and trimming and making it all look loved again.

This year was supposed to be the "Landscape the front yard" year and "fix up the back yard" year. Only the money slated for that project is going somewhere else instead. You know, that little girl named Ianna who we hope to bring home!

Don't worry, we're going to sneak in some play time this weekend too! It might involve some fine winding roads and the bikes!

Tuesday, May 25, 2010

DS: Yet another connection to Alzheimers

It's been a well documented fact that people with Down syndrome have a higher incidence of Alzheimers. A MUCH higher incidence. Because of that, Alzheimer research focused on the 21st chromosome, since people with DS have an extra copy of of the 21st.

Today it was announced there is another connection. The eyes.

A team of researchers found that a certain toxic protien, which is responsible for a very common type of cataract among people with Down syndrome (including children) is the same protein that causes Alzheimer Disease.

This was really interesting. Angela has small cataracts in each eye which we monitor closely. So far they've just stayed small, but I know a few kids who've had very serious loss of vision because of them. I wonder if they'll find that those who have DS and have these cataracts are more likely to develop Alzheimers as adults?

Monday, May 24, 2010

What a great weekend!

This past weekend was fantastic!

Friday night, in preparation for Saturday's big ride,  Dean and I detailed the bikes. Ok, I better re-state that before Dean corrects me. I washed MY bike, and Dean detailed both of ours! He wanted me to enter mine in the bike show next day, which-when he had my bike all purty look'in-I actually contemplated doing. He even did my rims and spokes, and anyone who's done that with their bike knows what a pain in the neck it is, and is saved for just a couple of times during the summer. (unless of course you have severe OCD and no kids to worry about while you're doing it.)

While Dean was detailing his bike, I got a wild notion to replace the chrome trim that runs along the inside edge of the tub. I mean, how hard could it be? Dean was running to the car parts place to see if they carried it, and as he left said, "Wow. Angela has been really quiet for a long time. What she up to?"
I wasn't worried, "She's playing Dog the Bounty Hunter in the back yard." I said, cuz that's what she was doing that last time I'd heard her stomping around (cuz she stomps when she walks) and her games last forever. Yes, it did occur to me that I should check on her RIGHT THEN, but I was very busy at the moment, so I didn't. Dean had been gone about 10 minutes when the guilt for not checking became too overwhelming. Mostly because I could hear the news headline in my head. "Child (insert terrible accident here) while mom plays messed up priorities tinkers polishes chrome."

I looked in the back yard at the climber and she wasn't there. I went in the front door and listened, and there were no sounds from Angela anywhere. I went to the basement and saw that her door was closed but her light was on. (she's obsessive about her light, so I knew she was in there. ) but she wasn't talking. Ummm if Angela isn't talking she's either eating or sleeping! I called, "Angela, are you in there?"

We're trying to teach HER to knock before entering, so I knocked on the door.

The voice said "No."

"You're not?"

"No."  (I can her rustling around.)

"Ok, but can I come in?"

"No. I need privacy."

"Well, I need to come in and get something."

I opened the door, and found out why she was so quiet. She WAS eating.

About 5 years ago I bought Angela an Easy Bake Oven. She never wanted anything to do with it, and I keep thinking I need to craigslist it or something. It's been sitting on a VERY HIGH shelf in her closet all this time.

And Angela is very short.

"I made cookies." she said, as she was trying to stuff the oven back in the box without my noticing. There was a bag of cookie mix poured all over the floor...and all over her face...and in her hair. "I see you were making cookies. Looks like you had fun. Can you do me a favor and next time, ask for some help, ok?"

I couldn't  yell at her. The toy was in HER closet, after all. If I don't want her to play with something, I guess I better not have it in her room, especially since she has finally realized the world does not stop at her eye level, but that that if she looks UP there are interesting things to behold! I glanced at the spot on the shelf where the box had been, and shuddered picturing Angela climbing up there. "Make sure you clean up the mess you made. The broom is in the kitchen."

I went back out to my bike, grinning at this very normal kid experience. Yeah, it was a couple years later than would have been typical with my other kids, but it happened, and for that I'm thrilled. Dean came back and I told him the story, and he grinned too. Angela provides us with a lot of entertainment.

Half hour later she still hadn't come outside to orbit around us while we work and she plays, which is what she usually does. I went back downstairs and found she'd made yet another discovery. (all in one day, too much for me!) Angela has a closet of full of stuff that has always been there but she has never played with. Every year I get rid of things, and get different things in hopes she will one day actually PLAY with something. I try getting them out and setting them up for her to "stumble upon", but it never works. But this day she discovered the Easy Bake Oven....and the Board Games! She had every one out, with all the pieces scattered around the floor, and when I found her she was playing "Sorry" with some invisible friends. (No, I could not see them, she was talking to them, so I knew they were there!) I left without saying anything, and she never knew I was there.

When I returned to the bikes Dean asked me what she was up to. "She's playing sorry all by herself. Poor kid."

"Oh honey," he said, "She's never alone! I bet she has 3 invisible friends with her!"

Wednesday, May 19, 2010

Snaggle tooth

See the tooth to YOUR right?  (the left side of her face) The one that's kind of sticking out funny? Yeah, while I was in Serbia/Bulgaria the new tooth came in. Except that, as is common for kids with Down syndrome, and has happened with almost every one of Angela's baby teeth, it didn't fall out, just pushed out. Except that she had braces on, so it pushed her braces out of line, messing up everything ELSE! UGH!


We're walking out the door now to go have that tooth pulled. This is the last of her baby too that's allowed to fall out. There are 5 others that are missing adult teeth behind them. Because they're all together in one spot (three on top, two on the bottom) if they fall out we'll have to put implants in because she'd loose bone. So, we're hoping they stay at least a few more years, but that's kind of wishful thinking.

Tuesday, May 18, 2010

What Would You Do? TOMORROW!

The Weds, May 19th segment of "What Would You Do?" is a MUST WATCH! Here's the storyline:

People with intellectual disabilities have more professional opportunities than ever before, but they still face ignorance and even bigotry. Working in cooperation with the National Down Syndrome Society, an actor with Down syndrome poses as a bagger in a grocery store. But it doesn’t take long for an ignorant customer – also an actor – to start protesting. “What’s the matter with you? Are you retarded?” he complains. Will unwitting observers, waiting their turn at the cashier, take a stand against this abuse or will they ignore it?

Next 5 Minutes


Next Five Minutes from David Platt on Vimeo.

Mornings

Monday, May 17, 2010

Just in case

Just in case you didn't see this picture in the Ride for Wishes post, I thought I'd post it again. First, since I'm always the one taking the pics, it's RARE to see one of me on my bike! And secondly, and I not the coolest mom around? I mean, seriously!

The guy in the white hat right behind me? That's Dean. He's cool too, only not as cool as me. He tries but...well...I'll just leave it at that. I'm trying to get my friend Tink to come up here and help me put some bling on my ride before...ummm SATURDAY..so I can enter it in the bike show. Cuz it may be COOL but it isn't quite SMOKE'IN HOT yet!

Ride for Wishes

The Sixth Annual Ride for Wishes (aka Chuck's Ride) is this Saturday, May 22nd. If you're a biker, PLEASE JOIN US ON THE RIDE! I promise, you won't be disappointed!!!!

If you're not a rider, there's stuff for you too! I think the coolest part for the kids is to be at the VFW when all the bikes come rolling in. The thunder is incredible when there are 300+ bikes!

A word of warning, if you're driving in the area at that time, you're SOL! The fire department closes Robert Street for however long it takes for the group to get from the Capitol to the VFW in West St. Paul road I think last year it took about 15 minutes.

Back to the event: There will be NINE...count 'em NINE bands playing over the course of the day. There is a bike show (I might actually enter Nooner and Spank this year, still haven't decided.) Lots of celebrities show up, too.  And just FUN FUN FUN!!!  Can you tell this is my most favorite event of the entire year?????

CLICK HERE for more details!!! 

In the meantime, here's some pictures from the last two years.

Perfect and Glorious Day!

There are two places I meet God. One is in the shower (this is strange, I know, but other mothers can identify, I'm sure!) I call the shower my prayer closet/decompression chamber. It's where I do my best thinking and praying. It's where I go to cry when things are tough. It's where God speaks to me. It's where I think of my best ideas! I think it's because its only one of two places where I'm completely ALONE! (well, most of the time, but I digress...)  My friends have often heard me start sentences with, "You know, I was in the shower this morning when I thought of something...." Even Dean says, "The shower is a good place for you."

The other place is on the my bike. The sights, the sounds, the smells, all while flying over the countryside...it's heaven to me! This morning I planned on spending the day riding with my in-laws. I arrived at their house with a big grin on my face. They asked where I wanted to ride to, "I don't even CARE! I just want to RIDE!"

It felt so good to ride! I've really missed my Nooner! (that's the name of my bike, for those who are new here!) It was a perfect and glorious day here in Minnesota. 70-75*, sunny and...just PERFECT! I did lots of praying on this ride, about all kinds of things. I even planned a couple of events!  Oh, and I redecorated the house AND Ianna's room! All in my head of course. How's that for a productive day?

This week we'll hook up Spank (that's Angela's sidecar) because Saturday is the annual "Ride for Wishes", which is probably THE BEST, and THE most organized ride we attend all summer. Not only that, but it's for an amazing cause! It's to raise funds for two or three specific Make A Wish recipients. Some of you may remember that Angela got to Make Her Wish two years ago. TWO YEARS AGO? Where did the time go? Anyway, I think I'm still coming down from the trip. LOL

So tonight I'll head to bed with my sunburned face....I KNOW, I KNOW! But you'll be happy to know my EYES are not sunburned, because I have a super lovely RACOON sunburn! HA! Maybe tomorrow I'll get a picture for you.

g'night everyone!

Friday, May 14, 2010

Where's my kid?




Somebody stole my kid and replaced her with a teenager! Who would do such a thing? 

Tonight she went to a teen dance. As we pulled into the parking lot I was given my instructions, "You drop me off. I'll go in by myself." I let her walk in alone and went in a minute behind her to sign her in. I made sure to not talk to her friends, so as not to embarrass her. When one friend came to say hello, I was given "the eye" and told, "Leave now! Go shopping or something."


"Really, you HAVE to take more pictures? You're going to make me LATE for the dance!"


This is the common "exasperated" look. She's trying to think of something cute to do so I'll take one last picture and put the camera away already.


There! Can we go now?


Wednesday, May 12, 2010

In Case You Missed It

If you're new here, it's possible you've missed this link to my adoption blog. There's not a lot there yet, since we're just starting the process. Hopefully by this time next year I'll be able to say, "Look at our beautiful new daughter!!!!" with a picture of her in our very own living room!

Back in the Saddle

After 6 weeks out of class, I'm back in the learning saddle. I'm only taking two classes this semester, but already in the first week the homework load is killing me. That's mostly due to me taking two condensed classes: meaning 15 weeks of work crammed into 7 1/2. I thought with only 2 classes this would be do-able. Unfortunately I didn't take into consideration the fact one of the classes is Algebra! Yesterday was my first class (3 hours long) where we covered two full chapters, which is due tomorrow. Ummm that is two weeks worth of work people! Wor that.is.due.tomorrow. What was I thinking?

So today I went and changed my class! And, while doing that was reminded WHY I took the condensed class! Oh yeah, I took it because there would only be one week that Angela wouldn't be in school, which means only one week of having to find someone to hang out with her while I'm in class.

It's a coin toss, really. Stress myself out, buried in homework, or stress myself out each week making sure I have someone to watch Angela while I'm at class.

I opted for the latter. And, if worse came to worse, with drive time and everything I'd only be gone two hours. Angela has been learning to stay home by herself for short periods of time, but we've never left her THAT long. I don't really think she's ready for it yet. Two hours is a long time for her to stay busy and not think of something creative and fun to do, like go visit a neighbor or cook, or call China.

Monday, May 10, 2010

Yet another

UGH! Why? Why do our kids have to get this? Why is this one of the things that is so often part of Down syndrome? This is not fair! And, I'll say it loud and clear, CANCER SUCKS!

Please add Ella Grace and her family to your prayer list. A couple days ago she was happily pushing her doll stroller around the house. Today she's in a hospital bed beginning Chemo. Click on her picture below to get to her blog.

Photobucket

Saturday, May 08, 2010

BABIES: Don't bother!

Remember my post a couple days ago about the movie "Babies"?

Well, I'm here to save you some money. Don't bother to see it! Yeah, it has a couple cute scenes, and it would make a great documentary for TV, but it is nowhere NEAR worth the ticket of a feature film! Really, it felt like a total waste of money. And, I think I might have been uncomfortable if I'd had my kid along for the very first scene. Think "National Geographic". And interesting perspective, but not really necessary for the movie.

So anyway, the movie documents the first year or so of four different babies born in very different parts of the world. San Francisco, Japan, Mongolia and...hmmm can't remember the last place. You'll see how babies are raised so differently in these areas, and it really was interesting to see that. But it also dragged.a.lot.

So there ya have it! Rent it on netflix, or wait till it comes up On Demand or something, but don't rush out to the theater to see it like I made Dean do tonight!

Tuesday, May 04, 2010

Flashmob

I LOVE stuff like this!

Angela interview

Over a year ago, in hopes of encouraging Angela to do some writing, I started a blog for her. Yeah, she pretty much avoided me a lot! Getting her to read is almost as difficult. We've discovered she really likes answering questions on video though, so maybe she's just going to VLOG instead! So pop on over to her blog and ask her some questions!

Monday, May 03, 2010

It's coming! Are you ready?

I can't wait for this movie to come out. I'm not sure what the release date is, but it's coming very soon! Are you planning on seeing it? Watching the trailer, I get a kick out of the baby who's just learned to walk and is already trying to balance stuff on his head! LOL

Saturday, May 01, 2010

How to Confuse Your Kid

Everyone knows the world revolves around time, and that time is governed by the t.v. schedule. If you didn't know that, you may have been hiding under a rock.

Angela mostly watches the Disney channel, and can tell you the line up every day from 3:15 p.m. until 9:00 p.m. (and no, she doesn't watch t.v. all that time, she just knows the schedule because they constantly put reminders on as to what's going to be on when. They do this for all the kids who have OCD who need to know these things, and Angela might be one of them. ) But Angela also has two grown-up shows she watches: The Middle, and Modern Family, and they happen to be on Wednesday nights. They're on back to back thankfully, so the second one marks bedtime.. and an end to the incessant talking. 

Every Monday morning, Angela and I have the following conversation, or some version of it:

A: Today is Monday.
M: Yep, it's Monday.
A: (counting on her fingers.) Tuesday...Wednesday...Two more days is Wednesday.
M: You're right, two more days until Wednesday.
A: The Middle and Modern Family are on Wednesday. I love Wednesday. (clapping her hands with glee)

This conversation might be repeated 382 times until the first show comes on.

I don't watch much T.V. because all my spare time is sucked up, and uselessly wasted online but I do have a couple shows I enjoy: Desperate Housewives, Brothers and Sisters, The Middle and Modern Family. see, we do spend time together!  While I was on my trip, Dean (aka Mr. Wonderful but one of my bloggy friends already stole that nickname) was nice enough to put my shows on the DVR.

This morning Angela was sitting at the dining room table, using my computer to watch the same 180 Youtube videos she always watches. Dean was making the first of our 900 Home Depot runs for the summer, so I decided it was a good time to watch some of my recorded shows. I found the first episode of "The Middle" that I'd missed, and hunkered down with my blanket to watch.

As soon as the intro music started, Angela paused her video.

A: What days it? Is today Wednesday?
M: No, it's Saturday. Can you turn your volume down a little bit?
A: It's Wednesday.
M: (confused, because Angela never mixes up the days.) No, it's Saturday. That's why you're sitting there watching Youtube videos and not at school.
A: No, it's Wednesday. The Middle is on, that means Wednesday.

She'll be messed up all day now. Remember years ago when the t.v. people who make up the schedule would suddenly switch everything around, changing days and times of all the shows? Yeah, that would be really bad for us.