Dressing for the eather or the World?

5 Mintues for Mom is running a Mother's Day photo contest. The photo can be alone, or with an essay telling the story behind it, or how the picture reminds you of motherhood. I've decided to enter this one. I know I've posted this before, but I'm doing it again! LOL I think this is what ever mother does every day, but being a mother of a child with a disability, I think we tend to do it with slightly a little more prayer behind it......................


It's a rare morning when I'm up before Angela. She usually beats the sun and the roosters. Today was one of those rare mornings, but I didn't beat her by much...minutes at most. All was quiet in the house as I lay in bed enveloped in my cocoon of blankets, and the giant fluff ball next to me that was Zurri.

And then I heard it. The smallest voice, rehearsing her day, naming all her friends. I got up and stood quietly, motionless, outside her bedroom door. I couldn't see her, so I knew her head was under the blankets. In her quiet croaky morning voice she chanted, "All my friends. Yep, all my friends be there. A party for me. Drew, Monica, Daddy, Desi, Grandma Spring, Mom, Dean, Noah, Tyler, Bryon, Mrs. Hubbard. Yep...all there...for me...my party...It's a fun time my party. Should I wear a dress? No...Should I wear a fancy shoes? No...Stripes. Yep, that's right. I'll wear my stripes. My Florida stripes....my party...all my special people will come."

She got herself up and dressed, then came to find me for some breakfast. "Mom? What I wearing to my party?"

As I envisioned the mountain of striped shirts in her dresser, I answered "I don't know Angela. I hadn't really thought about it. But, since stripes are your favorite I bet that would be a good choice, and certainly one we have many options for."

Time to get dressed for the bus. We're having frigid temperatures here in MN, so every possible piece of outdoor clothing is required. She struggled with her snow pants a bit, the ones that are threatening to fall apart before the end of winter when you can't find them in the stores anymore. She pulled on her boots, then her jacket. She's still not able to zip, so I bent down to help with that. I pulled up the zipper, then tied her scarf around her face. She pulled on her mittens as I slipped her "Cars" backpack over her shoulders. (she won't have anything to do with girly backpacks, no she wanted Spiderman or Cars!)

I opened the door to send the pink puffball out into the biting wind, but at the last second she turned, "You forgot my kiss mom!"and turned to face me with an exaggerated pucker, complete with crusted toothpaste on the corners of her mouth.

As I watched her waddle down our long, steep and icy driveway it occurred to me I wasn't just dressing her for the weather. I was dressing her to protect her against the elements of the world. I did it with all my kids, just as all parents do. But with Angela, there are some things in the world that she's a bit more vulnerable to. So I prepare her for them as best I can, giving her the protective layers to shield her from the bitter cold that the world can sometimes dish out to kids like her. Those who are different from everyone else, who struggle to learn what might come easy to most. I have spent 11 1/2 years praying over her, that the Lord will show her the right way, to the parts of the world that will welcome her, and love her for who she is.

She stands there in the wind, independent of me, well out of my protective reach, singing the songs of girlhood, ready to jump into the world with both feet. Her spirit screams "I'm READY! I can do it!"

Blogger Give Away!

My friend Renee is having a contest. The winner gets to pick something from her online store. Go HERE to enter!

My Perfect Child

I'd heard this a few years ago, but was reminded of it again today when it was read at Eric's funeral.

As my children were born,
I wanted them to be perfect.

When they were babies,
I wanted them to smile and be content playing with their toys.
I wanted them to be happy and to laugh continually
instead of crying and being demanding.
I wanted them to see the beautiful side of life.

As they grew older,
I wanted them to be giving instead of selfish.
I wanted them to skip the terrible twos.
I wanted them to stay innocent forever.

As they became teen-agers,
I wanted them to be obedient and not rebellious, mannerly and not mouthy.
I wanted them to be full of love, gentle and kind-hearted.
"Oh, God, give me a child like this" was often my prayer.
One day He did. Some call him handicapped... I call him Perfect!!

Funeral

Tomorrow we're attending the funeral of Dean's cousin's son. I never met 18 year old Eric, but I know I will spend this entire funeral crying. (obituary here)

Eric was severely disabled, and required a lot of care.

The day Eric died, as soon as Dean told me I was in tears for his mother. Dean was a little surprised that I was so upset. After all, I'd never met Eric, and have only met his mom once. So I tried to explain to him what I was feeling.

A few years ago Angela had a classmate named Spencer who was 8 years. A big kid who towered over 5 year old Angela, but Angela was his favorite. She could get him to do anything! At 8 years old Spencer functioned at about a 6 month level, was the height of a 12 year old, and weighed about 150 lbs. But he had one saving grace, and that was he was able to walk, even if it was with a lot of support. It made getting him from point A to point B much easier.

One day at school Spencer was very irritable, kind of whiny. Mid morning he started running a temp so his mom was called. They made the agonizingly slow trip to the car, then headed for home, but on the way he started seizing. Mom reversed course and headed for the hospital just a couple miles down the road. (this was before everyone had cell phones.) But Spencer's heart gave out before they made it there.

At the funeral, when I went to give his mom a hug, she pulled away, hands on my shoulders and looked me in the eye. With tears streaming down her face she asked me, "Now what? What do I do now? For the past 8 1/2 years every waking moment has been spent caring for Spencer. I'm Spencer's mom. I'm not Debbie, I'm Spencer's mom. What do I do now? How will I find my way?"

So tonight, as I figure out what to wear for the funeral of a young man I've never met, I can't help but put myself in the shoes of his mom. Naturally I would be upset if anything happened to ANY of my kids. Angela, though, is different. I practically know every cell in her body. The most I know about my other kids' genetic make-up is that I was their mother, and Kevin was their father. I have seen Angela's internal organs. I have nursed her through almost every ailment known to Down Syndrome. I have spent countless hours helping her to achieve what others take for granted. Although Tyler is back home at the moment, he is self sufficient. Angela is not. I would venture to say that 90% of my being revolves around Angela's care and nuturing.

I am "Angela's Mom".

Over the past year I have started to find "me" again. Just little things here and there. I'm afraid of the "what if" with Angela. I know that if something happens to her, I'll be lost for a long time. I guess it's kind of inevitable when we have kids who require a bit more care.

If you could, please remember Eric's parents in your prayers, especially his mom.

I won't do it! (said with arms crossed and foot stomp)

See this thing? It's a wallpaper scoring tool.
I have probably bought 4 of 'em in the last few years. I REFUSE to buy yet another, but...umm...where is the one I was using a few months ago? After my post about the list of projects that need to get done, I decided I might as well get to work on the kitchen. I got out my scraper, got out my DIF (I swear by that stuff for wallpaper removal, especially when there are TWO layers to remove!), and was all set to start. Except for the small problem of finding the darned scoring tool!

Some people say, "Don't score it! It'll take forever to get off!" I find this to NOT be true, but ONLY if the tool is used correctly. Used with too much pressure, and yes...the paper will come off in bits and pieces and it'll take you forever. Well, that and the fact I have two layers to get through. If you have two layers you can get your DIF (some people prefer to use plain water, but I like my DIF) down to the bottom layer.

Anyway, I'm now on a hunt for the thing. I've got the urge to work on this project NOW, but that could be very short lived so I need to do it while the urge is there! LOL

The Countdown

Seven weeks.

That is how long we have until Dean's annual family reunion, and it's our turn to host it. Keep in mind the weekend prior we'll be out of town! Dean and I work well under pressure, so I'm sure we'll be fine. Yes, I'm sure of it. No...really...we'll be just fine. We won't even kill each other!

The last time we had a big thing here (his twin brother's wedding) we totally re-landscaped the yard in that amount of time! We do know ourselves well though, and when working under such stress, some days one of us might say to the other, "Don't talk to me today. Really...it would be better not to."

Here's what needs to get done by party time:

Remodel basement bathroom (It's been 1/2 gutted for 3 years now. Since not one thing has been purchased for this project, this will prove to be the most interesting project of all) All that junk in the background is where the shower is supposed to be, but has now become kind of a storage area....sigh....(I really didn't want to post the picture, but it'll be fun to show an "after"!)


Do SOMETHING with the *^&# pond!! I want it filled in. The pond is huge, and honestly as much work as a pool, and if I want that much work, I want something I can use! Here's what it normally looks like


And here's what it looks like now. This may not LOOK like much work, but that is an entire weekend project you're looking at. And those rocks? H-E-A-V-Y, and I can't lift anything so it'll be up to Dean and Tyler. This will need to be done before the fence goes in.


Get fence installed in back yard (Containment for Angela and the dogs. This will be a HUGE stress reliever on several different levels)

Finish stripping kitchen wallpaper, then paint. Here's what it looks like now:(project I started LAST summer, now needs to get done.)


Cleaning the garage would be a good thing too! Two years ago I took this picture to PROOVE that we really could fit two cars AND a motorcycle in there! Now? Can't even get ONE car in there because there's a junker, TWO motorcycles, and lots of JUNK!


Do some planting outside to replace stuff destroyed by the dumb Chemlawn guy last summer. (You'd think they could tell the difference between a hosta, clamatis, and weeds! OMG, I'm so furious about what they killed! 5 years of growth in the gardens GONE!)

Haul a load of junk furniture to the dump (old couch, some odds and ends of crap.)

Repaint floor in 3 season porch (This is the room where we serve food when we entertain in the yard. But there were puppies in there last fall, so it needs to be thoroughly scrubbed down and repainted. The dump couch is the "dog couch" from that room.) Sorry, but I will NOT be posting a picture of what this looks like right now! Just imagine the worst.


Professionally clean basement carpet (We have 4 dogs, need I say more?)

Re-seed the yard. I got the front about 3/4 done a couple days ago, and have a huge BARE spot fenced off so the dogs can't walk on the heavy seeding I did there. That was the favorite wrestling and "let me make toothpicks with this stick" spot.


Find a place for all the dogs the day before and day of the party (This is so that not only are the dogs not underfoot in the final hours, but also so that we're not re-cleaning AND we can get rid of all land mines before company comes.) Look at these four lovely, well-behaved dogs, who wouldn't want them for a couple of days?



Anyone need a dresser? It's in my way!

Enterprise Rent A Car

Just what IS the purpose of a car rental agency? To rent cars? And who do they usually rent them to? Joe Schmoe who lives right next door, or John Smith who flew in from out of town? How many people pick up their rental cars right at the airport? Is it safe to say that those who pick their car at the airport are usually from out of town, usually from out of state even? Here's the story of Ragamuffin Soul, who recently had a run-in with Enterprise Rent A Car. Why am I linking to this story? Because the more people that do, the higher his google rank on a search. He's nearing the top!!!! That means if someone googles "Enterprise Rent A Car" they're going to see his post, and they need to!

Dear Enterprise Rent A Car

99 Balloons

It's HIS plan that counts, not what any doctor says.
http://www.ignitermedia.com/products/iv/singles/570/99-Balloons

Oh no! Please pray!

Dean works for a small, but successful company. This afternoon his boss Pat, Pat's wife, and a couple employees went to lunch together. One of the employees rode with Pat. When they were done eating, as they were getting ready to pull out of the parking lot Pat suffered a massive heart attack!

The employee riding with him was able to do CPR until the police got there, who took over until the paramedics got there and used the defibrillator on him.

As of 7:00 this evening Pat is on life support and in a coma. Please pray for him and his family. Please pray for those who were there feeling helpless at the time. Please pray that the other employees can keep things running smoothly while Pat recovers.

Wordless Wednesday

No Rocks In My House!

You may remember this post about Angela learning to swim. We have consitantly swam 3-4 nights per week since September, and I am proud to say that Angela has lost the nickname "The Rock", and is now called "A Swimmer". She has worked so hard for this, and I have tried so hard to keep my mouth shut so Coach Keanne can work his magic. I'm just so stink'in proud! Be prepared when you watch the video, you will find yourself trying to make her swim harder! LOL

Heaven Gained Another Angel

Heaven gained another angel last night. Cody Lee is finally free of pain, free of sickness, and is dancing in the arms of Jesus. Please say a prayer for his family as they say goodbye to their boy. 12 years is too soon to say goodbye to a child.

For the Boy

A valiant fight
That's what you've shown the world
that laughter is important
no matter how sick you are
or how much pain you're feeling.

But how do you say goodbye to your mother,
Your brother and sisters
Your father.
How do you tell them that 12 years
wasn't long enough?
That you want to be out
playing ball with the other boys
not wondering if you'll feel your mother's kisses in the morning.

This is bigger than any boy
and yet you rise to the challenge.
You have fought the fight of a warrior.
You won.
You won your place in God's kingdom!

Close your eyes now
and rest
You see Him waiting for you.
You hear him calling your name.
Don't be afraid
to sleep.

Please pray for Cody Lee

Please...visit the carepage of CodyLee (go to www.carepages.com , click "visit", then type in "codylee". His family needs every prayer they can get right now.

Ooohhh I can hardly wait!

Angela has always wanted to ride (motorcycle) with us, but frankly I'm a little worried that she might decide to just get off the bike going 65 mph down the highway! So, last spring I purchased a sidecar to attach to my bike so that she can ride with me.

Sidecars are complicated things really. Well, I guess they're not THAT complicated, but the certainly can't just be plopped onto the bike, and you certainly can't expect to just jump on and go! Nope, can't do that. First we got hooked up with a sidecar group...the Skunks (sidecars up north, with "up north" being any place north of anything!) who kind of helped me figure out what to get.

So I got this....


And needed to figure out how to attach it to this....


Did I mention that was back in June or so, and it's now April? Well, first I had to finish paying the very patient man who sold me the sidecar. After that, the very particular me didn't want a WHITE sidecar attached to the RED bike. No, unmatching parts wouldn't be good for my psyche, so I was on a quest for someone to paint the sidecar. Oh yeah, that cost money too, doesn't it?

Finally in February I got hooked up with TJ Design who does AMAZING work on bikes. On March 12th we had a warm day (52! WHOO HOO!) so I rode my bike the 50+ miles to his shop so we could discuss the paint job and he could do a paint match with my bike. We expected to have it done by the end of March, but the following day I had that little mishap with the ice.

Next week I get to pick up my bike, and the following week the sidecar should be done! I can't wait to post pictures of how pretty it's going to be! I wish I'd been able to afford a custom job, but for now "matching" works for me! As soon as the sidecar is done, I'll bring both the bike and tub down to Dave's Cycle to have the sidecar mounted.

And once it's mounted, what's left to do? LEARN HOW TO RIDE IT! I'm glad I've gotten well connected in the sidecar world, but there are some things about sidecar usage that cannot be taught. Rest assured, I'll be safe on my hack before Angela will be going along on any rides. In the meantime, I'm dreaming of all the weekend trips we can take as a family!!!!

Two in just a few months

That's two politicians that is! Two US politicians to have babies with Down Syndrome. The state of Alaska released this press release today:

Palin Family Welcomes Fifth Child

April 18, 2008, Anchorage, Alaska – Governor Sarah Palin and her husband Todd welcomed the arrival of their fifth child this morning. The Palins were thankful that the Governor’s labor began yesterday while she was in Texas at the Governor's Energy Conference where she gave the keynote luncheon address, but let up enough for her to travel on Alaska Airlines back to Alaska in time to deliver her second son.

Trig Paxson Van Palin was born at 6:30 a.m. and weighs six pounds, two ounces. The Governor and Trig are both doing well and resting comfortably.

The family released the following statement:

"Trig is beautiful and already adored by us. We knew through early testing he would face special challenges, and we feel privileged that God would entrust us with this gift and allow us unspeakable joy as he entered our lives. We have faith that every baby is created for good purpose and has potential to make this world a better place. We are truly blessed."

The Palins have four other children including Track, 18, Bristol, 17, Willow, 13 and Piper, 7.

Sweet Nothings In My Ear

Terri, over at Terri's Special Children Blog posted about an upcoming movie. Being an interpreter, this one is close to my heart, and a struggle I've seen played out in many families.

"Sweet Nothings In My Ear" is the story of a couple facing a difficult decision. Suppose your child was deaf, but could have an operation (not without risk) that could make him hear again?

Dan Miller (Jeff Daniels) and his wife Laura (Marlee Matlin) only wants what's best for their happy and healthy 8 year old son Adam, who's been deaf since age 4. Laura opposes the surgery - a cochlear implant. Being deaf she doesn't consider it a disability, and believes an operation, regardless of outcome, would make Adam feel that something was wrong with him. However Dan, who can hear, misses talking and listening to his son. For him and operation is worth the risk, believing Adam's life would be easier and more complete if he could hear.

This is a devoted family facing a moment of truth. Together or apart, Laura and Dan must make a life altering decision on behalf of their son. You won't want to miss this powerful presentation from the Hallmark Hall of Fame on Sunday April 20th, 9/8c on CBS.

The Dog House

I love my dogs. Really, truly, I love each one of them. They entertain us as they entertain each other. They keep us centered, and they're very good at spending our money.

Rubee...she's the matriarch of the pack (but not the leader). At 6 1/2 years old her life is all about the sunniest spot on the driveway, where she'll spend most of the day. Since we're up on a hill she can watch the entire neighborhood from there, content as can be. Rubee also has a secret addiction to bread...whole loaves of it...and if it's not put waaaaay back on the kitchen counter it'll be gone when you want to make toast in the morning. Rubee is a Golden Retriever, with "retriever" being the operative word. Goldens are known for bringing "gifts" to you when you come home from work, or from walking down the driveway to get the mail. Sometimes the gifts are nice things like a dog toy, but she's not picky. A bra, dirty underwear, or an empty beer can will do. Here's Rubee, enjoying the driveway on a warm day a couple weeks ago. Notice that she found the only dry spot there was!

Dudley...Dudley is a 2 1/2 year old Goldendoodle (golden retriever/Standard Poodle cross) Dudley is deceptively huge. He's very tall (can lay his head on a kitchen table comfortably) but skin and bones underneath is fluffy coat. He's super smart and so eager to please! He's the dog you see in the agility video with Angela. He's a mama's boy, but loves to go to work with Dean too. As long as you're happy, he's happy. Dudley happens to love diet food, which I discovered when I was on Nutrisystem last year. Yep, that $300 a month shipment could disappear in a couple of days! No wonder he's so skinny, he's on a diet! Dudley is one of Rubee's sons, which means he inherited the retriever gene. Unfortunately he doesn't always bring you what he's found to steal. In the mornings when we let everyone outside we have to check his mouth first, as he's often hiding contraband in his giant mouth. You wouldn't believe what he can fit in there! Hiding works two ways though, so he's very good at sneaking things INTO the house too...like dean things. Sometimes he forgets he's hiding stuff in his mouth though. Either that or he decides he doesn't want to give it up, so he swallows it. Yep, I've discovered doing poop patrol that little girl socks make a tasty treat. So does aluminum foil.

(left, Zurri in front, Dudley in back)

Zurri....Zurri is the princess, and is the leader of the pack. She's an 18 month old standard poodle, and future mom here at our place. (she'll have her first litter sometime around October 2008) Being a teenager, Zurri has recently regressed to a 6 month old puppy stage and can hardly contain herself. My well-trained princess can now go from standing still with all 4 feet on the ground, to springing straight up in the air to look me in the eye. She's also learned something new. That if you run through the invisible fence, the shock only bothers you for a split second, and when you're ready to come back into the yard you just have to let out a special little bark and the human mom will come get you. But for all the silly things this highly intelligent dog does, she is the best cuddler in the world! She doesn't like anyone to be upset, weather they be human or beast. She spends hours every day cleaning all the other dogs (intensely licking their eyes, inside their ears and mouths, etc.) and would do the same to us if we let her.

(baby Roman trying to make sick Angela feel better.)

And then there is Roman. Roman is the new baby who isn't supposed to be here. He's SUPPOSED to be in a guardian home, but our arrangement fell through and so he's here with us. Roman is a 4 1/2 month old miniature red poodle, and a total clown. I didn't think it would ever be possible, but I think he's even smarter than Zurri. I can teach him any new command in about 30 seconds, and he was ringing the bell to go outside within 24 hours of my introducing it to him. Roman is also a puppy, which means he does puppy things like chew up whatever he can get his teeth on. His favorite chew toy is the dust pan, and even though it's bigger than him, he drags that thing all over the house. He's a mama's boy, only way worse than Dudley. If I close myself behind the door to do something like...say...go to the bathroom, he throws a tantrum outside the door. If I sit at the computer he runs to get the dust pan so he can lay at my feet and chew in peace. Roman is a theif though, and has discovered that Angela's room holds all kinds of treasures, most of which cause her to chase after him yelling, "Give it BACK you naughty boy!" Roman LOVES these games of course. Roman has also taught me that I'm at the computer a lot. The other day, while he was outside, I sat down on the couch. A couple minutes later when he barked at the door Dean let him in. I watched him run through the entry, down the hall and stick his head in the office door. What? No mom? But that's where I ALWAYS find her! He turned and looked in the bathroom, but when he didn't find me there either he got a puzzled look on his face, and stuck his head into the bedroom instead. No mom THERE EITHER? In a soft voice I called to him from the couch. He turned, saw me and came FLYING through the house as if he was saying, "Well THERE you are! I've been looking all over for you! I missed you!!!!"

Yes, our life is crazy with 4 dogs plus one kid in the house, but we like it that way!

Worldess Wednesday

Don't forget to watch!

On Saturday at 9:00 ET the Lifetime channel will air "The Memory Keeper's Daughter". Many of you have read the book, and even more of us in the Down Syndrome community have been waiting for the movie to come out. (how many of us sent pictures of our kids for the casting call? LOL) Anyway, set your Tivo's or your DVR's if you're not going to be home.

Krystal Hope Nausbaum, who has Down syndrome, portrays the character of Phoebe from age 13 to 22.