Blogging about life and 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, July 30, 2010

Embarrassing moment of the week

Here's my embarrassing moment of the week, courtesy of Angela. I'm sure someday she won't appreciate the fact that I posted this, but I can't NOT. Really...it must be posted.

So Tuesday was a record hot day here. 100 degrees and 90 something percent humidity. That was HOT, and for my girl with anhidrosis, it was SUPER hot. It was take-your-bra-off hot!

Anyway, Angela and I had to bring some paperwork over to the homestudy agency so we can work on getting this new sister home. We parked in the scorching parking lot and went into the building. It's a large building, but the office itself is small. Angela, the Agency representative and I were sitting at a small, round conference table; the rep on my left, and Angela on my right.

Angela was still recovering from being overheated, and she was tired from her morning of summer school, so she was draped over the back of her chair, but I wasn't really paying attention to her (big mistake) because the Rep and I were going over the papers I'd just pulled out of the big envelope. And besides, she's 14, for goodness sakes.

Suddenly the rep gets and odd look on her face and kind of points in a "you better check our your kid" kind of way.

It is at that moment I wanted to crawl under the table and D.I.E.

There was Angela, leaned way back in her chair, with her bottom of her tshirt OVER HER FACE, with her bra-less chest exposed for all the world to see.

"Ummm EXCUSE ME!" I said.

"Oh...sorry...I was reyaxin. And I'm HOT." she said casually, as she pulled her shirt down, then yawned and stretched like I'd just interrupted a good nap.

"Yeah, well, that's how you relax...at home...in your bedroom...A.L.O.N.E."

The rep laughed, and said something about it being a good thing we're all ladies, or something to try to make me feel better.

Man, I love being a mom!

Grandbabies

I'm not technically old enough to have grandbabies. Well, I AM...But...we don't need to be doing all this math, now, do we? Anyway, if you MUST know, I raised my stepsons from the time they were 3 & 5 years old. My oldest, Robbie, has 3 little girls, and they were in town this week. Man, do I love having little girls around! Especially since Angela, who grew up with four big brothers, is NOT girlie girl!

The newest baby is Kyleigh. She is a buddah baby! She looks just like her daddy, AND her mommy (who share similar features) Yeah, well she was NOT happy with this gramma holding her. I think there was about 15 minutes that I got to hold her that she wasn't VERY upset! (there are no pictures of that grand event!) But, she is still a beauty!



It's pictures like these that make me wish Dean and I had been able to have babies together.



This is Mahryah, and she's turning 5 in August. Mahryah is a blonde version of her daddy at the same age! And is she a spitfire. She's kind of a combination of her uncle Bryon, and there must be some of her mom in there somewhere. She had the biggest hug for Angela when the got here!


This is Teighlor (with an unhappy baby Kyleigh) and she just turned 4. Teighlor wants to stay with me forever, you know. ;-)



Then I remembered that I have my 25h high school reunion next week, and I should be bringing pictures to share, so I made everyone act happy and sit for pictures. I forgot to get Dean and I in them though, so there are no pictures of Dean and I with the family. That means I'm going to my reunion with a picture of some family which could belong to anyone, and nobody will believe they are mine. It also means if anyone else shows up without family pictures to pass around, I can share with them. Cuz I'm nice like that.


Only two of my 5 kids are missing! Noah and Bryon are nowhere to be found for pictures. But, there is room to photoshop them into this picture, I think! Since they didn't show up, I think I'll just put some naked baby pictures of them in here. That would serve them right, don't you think? Don't ask me what is up with Angela's hands. Her right hand is signing "I love you", her left? I think that's a DS gang sign she learned at camp.

No babies were hurt in the taking of these pictures.

Wednesday, July 28, 2010

Camp

So last Friday Dean and I drove out to the Wisconsin Dells area to pick Angela up from Camp. (yes, she went to another Camp. It is my summer salvation!)

This particular camp is put on by the Easter Seals of Wisconsin, and it is her second year attending. If you are in the Twin Cities area of MN, (ok, if you are within driving distance....we drive 4 hours, and met another family that drives 8 from Kansas City!) and you have a child with ANY disability, you are missing out if you don't access this camp! They have lots of scholarships available, you only have to ask! They are FANTASTIC!!!! The camp is staffed 1:2 and campers are paired to other campers of similar ability levels and interests. Then those pairs spend the week with other groups. So you might have the "green group" that is made up of 12 pairs of campers.

Anyway, they do all the typical camp things at this camp. They also have a "bring a buddy" or "bring a sibling" program, and the buddy or sibling can be disabled or non-disabled. You might want to go read this post about Angela's plans for camp next year! (but bring a tissue with you!)

So the coolest thing happened at the end of Angela's camp session this year. The last night of camp, while the campers were enjoying their camp dance or something, the camp board of directors were having a board meeting which included some of their biggest financial supporters. You know, like the Lions, Elks Club, local businesses, etc. They chose one of the campers to come speak at the board meeting about their camp experience. Guess which darling camper they chose? Guess which darling camper told EVERY DETAIL about camp, and talked about driving "all the way from "Missisota" to come to "the best camp EVER" (don't worry Down syndrome camp people, she thinks yours is the best camp ever too!) Guess which camper got those checkbooks to come out!!!

Yes, that's my little camper!

Monday, July 26, 2010

Oprah

October is fast approaching, and with it comes Down syndrome Awareness month. Lots of families are contacting Oprah about doing a DS awareness show, since she never has, and this is her last season.

So, I put in a submission. Its kind of blah, but it's all I could think of.
..............................................

My 14 year old daughter and I wind through the que for the roller coaster. She is anxious to get on the ride, while I am quite nervous. We've never been on this one before. She is giddy with excitement, anticipating the feeling of her stomach rising and falling with the great climbs, drops and loops-de-loops the ride is going to make.

When it's our turn, she gets the added thrill of getting the front car while I cringe with dread. She climbs in, pushes the bar onto our laps, and throws her hands in the air. "Do it mom!" she says. Not me! I grab the bar and hang on for dear life. We ride the ride together, me with my eyes shut, waiting for something bad to happen. Going up the first hill I open them just long enough to glance at her. There she is with her hands in the air, eyes wide open, laughing and screaming for more. That's when I realized it: that is exactly how she lives her entire life, this child of mine who I was told would never survive, would never walk, or talk. This child with Down syndrome who people tease and stare at. I need to open my eyes more, to throw my hands in the air and ride the ride with my eyes wide open. I need to feel that careless abandon. Maybe if we all rode this ride called life like my daughter, we'd learn more of what we're supposed to be learning here.

Last week she attended a camp for teens with disabilities and was chosen to speak to the financial supporters about her camp experience. I laughed when they told me this, because they acted like I'd be surprised. What they didn't realize was that giving Angela a microphone was putting her in her best element! Giving her an audience is a little like putting miracle grow on a plant.

My daughter has a message for everyone. I'd love for you to hear it, Oprah.

Sunday, July 25, 2010

it's that word again

It's that word...that one I hate to say....c.a.n.c.e.r.

In the world of Down syndrome, it's a word we try to avoid. Our kids are are like moving targets, and we parents sometimes feel like we're playing a real life game of paintball, dodging the next bullet, knowing that one of our kids is bound to get hit.

Only this time it's not a kid. This time the one to get hit was one of the moms. This isn't supposed to happen. It's not how the game is supposed to go. It's like someone jumped in and messed with the rules or something and none of us know what to do. I want to jump up and call "Foul!" or something.

McKenna is supposed to be dealing with her children's medical issues, not the other way around! And, in fact, she is in the midst of dealing with her children's medial issues! She doesn't have TIME to have cancer, people! I mean REALLY, what kind of a sick joke is being played on this family? It is situations like this, when I want to get in the face of God and ask an awful lot of questions. I'm betting Mckenna and her husband DJ are feeling pretty much the same way, aren't you?

I first met my friend McKenna on the website Downsyn after her daughter Darah was born with Down syndrome. Then her son Connor was born, and then last year they adopted their daughter Reese from Easter Europe. Reese also has DS. I even got to meet McKenna and her husband DJ in Atlanta at the NDSC conference a few years ago, so I can say I know her "in real life".

McKenna was diagnosed with Chronic Myelocytic Leukemia a couple days ago, and was already started on Chemotherapy. They're still pretty much in shock and unsure of a lot of things. But I do know this: If anyone can kick Cancer's butt, McKenna can!

Their family can use all the prayers and support they can get. Please hop on over to their blog, and follow along with their story. Please join us as we pray against cancer, and pray for McKenna's to have the strength she needs to kick cancer's butt!

Tuesday, July 20, 2010

Another angel gained her wings today


For several months you've seen Kristen's button over on my right sidebar. This morning, in the arms of her mom and dad, Kristen took the hand of God and joined him at the throne.

Please say a prayer for her mom, dad, brother and sisters today.

Thursday, July 15, 2010

I missed my birthday!


My blog birthday, that is! 1,000 posts passed right by without my even noticing. This post will bring me to 1,005. Wow! I'm getting old.

Tuesday, July 13, 2010

Swimming progress

In just the last 3 weeks, Angela has made fantastic progress swimming! These videos are kind of long, since she insists on my recording her going BOTH directions for each stroke, so feel free to just watch part of them. LOL (like I would know otherwise. HA!)

In January she couldn't do the breast stroke, stalled out in the middle of the pool and was seconds from needing to be rescued! Now look at her go.

Freestlye: If you do watch her return lap, you'll see what happens to her stroke when she gets tired. Angela had a couple "neurological events" as an infant (strokes) that affect her left side. When she gets tired, her left side gets very uncoordinated, and she can't put the arms, kicking and breathing all together. Her return lap is a prime example.

For some reason her butterfly didn't record. I can't believe she's doing it now. I didn't think she'd ever really "get it", but not only IS she, but it looks pretty good. Now we're just mainly working on form.

Left to work on is her back stroke, because she doesn't get the whole "arms out of the water" thing, and in the supine position she can't keep her legs at the top of the water to kick. Also she'll start learning flip turns soon.

This kid amazes me every single day!

Monday, July 12, 2010

Where am I?

If you're wondering where I've been lately, well, let me just say two words:

ALGEBRA MIDTERMS!!!!!!

Tuesday, July 06, 2010

Da Funk

I am indefunk.

I think that's almost a dirty word, I'm pretty sure. It means that I'm having trouble keeping my head above water at the moment, but I'm not completely sure why. Well, yeah, live is sorta stressful at the moment. I mean, we're *trying* to do an adoption, we just had a major holiday in which I cried more than I care to admit (every time making an excuse to get something out of the car, digging in the back end of it so others wouldn't see) and Dean just lost his job. Things happen.

We hopefully have a litter of puppies on the way, and people coming to meet dogs this weekend. It's been two years since we've had a full litter of puppies here (we had a singleton here last year, which is quite unusual, and actually more work than an entire litter since I had to teach him what he would have learned from his littermates!) So we're looking forward to that. And we're also working on getting some projects done around the house that Dean was having trouble finding the time to do. There are small blessings to be found in the layoff, I guess!

I just finished a class that I really struggled with, and finished just 2 points short of an A. UGH! Which was very frustrating to me. On the other hand, I got my ACT scores back and I scored a 26, which really surprised me. Now if only I could get into the key classes I want. I have to take my Algebra mid-terms next week, and THAT will be my most difficult class I've taken all year!!! That one will require all kinds of prayer and intercession! LOL

I think my blog is long overdue for a Q & A! So, who's game? What kinds of questions do you have for me? Since I have puppies due soon, and this is the time of year people are often thinking of adding a puppy to their family, do you have puppy related questions to ask? What about other non-dog related questions?

Saturday, July 03, 2010

Independence Day

Yesterday Tyler reminded me it's not "The 4th of July" its "Independence Day", and he's right. I think we've forgotten the name of the holiday. Maybe we should go back to calling it by it's name.

Yesterday morning Dean received an email from work at 6:30 a.m. He'd been laid off. It's like one of those really bad break ups. You know, you should never break  up, or lay anyone off, via email. It's bad manners. Apparently the people run his company don't read Miss Manners.

Today is my son Noah's birthday. I haven't spoken to Noah, save a 10 minute Facebook chat on December 22nd, since June of 2009. Noah, for reasons we can only imagine, has shut us out of his lives, and my heart is broken about it.

Noah needs tons of prayer, as Satan eats him alive, piece by piece, and Noah wears the marks to prove it. (No, really, he does, you'll just have to take my word for it.) I want my first born back.

I'm going to go have myself a cry in the bathroom for my son, then Dean's job. And when I'm done with that I'll join the rest of my extended family on the dock for my sister's wedding.

What a mixed up day.