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!"

Monday, April 28, 2008

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!"

Sunday, April 27, 2008

Blogger Give Away!

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

Saturday, April 26, 2008

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!!

Friday, April 25, 2008

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"!)
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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
Pond

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

Thursday, April 24, 2008

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

Wednesday, April 23, 2008

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

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Monday, April 21, 2008

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.

Sunday, April 20, 2008

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.

Saturday, April 19, 2008

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.

Friday, April 18, 2008

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

Wednesday, April 16, 2008

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

Friday, April 11, 2008

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.


Downsyn After Dark

OK so many of you won't have any interest in this post, but for those of you in the Down syndrome community, especially those of you who post at Downsyn, we have a new community to post at when Downsyn is not working. We are still active Downsyn members, but when Downsyn is broken and you need your fix, come join us at Downsyn After Dark. You'll have to register for a Yuku account and then jump in and post! We look forward to seeing you there! New members who don't post at Downsyn are always welcome too!

Busted!


When Angela was 11 months old she was diagnosed with a mild, bilateral, high frequency, sensorineural hearing loss. Let me put that to you in English. "Bilateral" means both ears. "Sensorineural" means that the loss will not be improved by putting in ear tubes because she the actual auditory nerve is damaged. You cannot fix the auditory nerve. And "high frequency" means that in the speech tones, she doesn't hear things like sh, s, f, h, ch,k, p, b, t, d, th,. So if you were to take a sentence like "Did you put your socks on yet?" Angela will hear something like " i you puh your ah on yeh".

And so, at a year old, Angela was fitted with her first set of hearing aids. She wore them really well until she was 3 years old and it was time to start preschool. She acted as if she was afraid to make any noise herself, and she would stand in the middle of her classroom afraid to even take a walk around the room. Take her aids off and she was a happy camper, bee bopping around like everyone else. We decided to forgo the aids for a bit.

When Angela was starting kindergarten we went back to the aids and she tolerated them much better, as long as she was at school. At home she wanted her aids off and would go to great lengths to hide them all over the place.

In second grade we discovered she also needed glasses, and THAT is when we found out how tiny her ears really were. We'd always had a tough time getting a good fit for her hearing aids, but add glasses to the mix and it was a disaster. Her tiny ears couldn't support both an aid and glasses. Finally, in a last ditch effort, we petitioned the insurance compay to pay for tiny in-the-ear hearing aids. These aren't usually done for small kids because they have to be rebuilt on a regular basis as the child's ear canal grows. Fortunately the insurance company approved them. Unfortunately Angela didn't have them very long before she fed them to one of the dogs. That was the end of hearing aids at home for awhile. She still wore them in school, but I gave up at home, even though Angela's hearing had changed and had gone from a "mild loss" to a "moderate loss", meaning aids were even more important for her.

Last fall my nephew AND my father in law were fitted with new aids. They're the new "open fit" aids, which are much smaller and much lighter than the aids commonly worn until that point, and are nearly invisible. They're also ideal for Angela's type of hearing loss. Dean and I talked about it a couple of times, but really felt we'd be pushing our luck buying yet another set of aids, and it was likely insurance wouldn't cover them yet. (insurance only pays for them once every 5 years.)

The phrase "Ignorance is bliss" fit us well, until Christmas vacation rolled around and we realized just how bad Angela's hearing was. Wearing her aids every day in school she does fine, but when there is a long school break and she's un-aided...well..there was a DRAMATIC difference in her speech. We could barely understand her.

In March (I know, I'm slow) I finally got around to ordering her new aids, which brings me to the title of my post. On Wednesday Angela and I went to pick up her new aids. Since she's never been very tolerant of them at home, I've been talking them up for a couple of weeks. She had some complaints while they were being fitted, and we have to go back next week for ear molds that we were hoping to not need, but she seems to be doing well with them.

Last night I was in the kitchen sneaking a spoonful of fudge topping from a jar in the fridge. (I hope my Jenny Craig counselor isn't reading!) when I hear a voice coming from down the hall, "What you having?"

gulp

"Ummm....just getting stuff ready for dinner. Are you hungry?" Angela walked into the kitchen and looked from me to the fridge, and back again. Then turned and walked back out. I think she was trying to decide if she'd REALLY heard me in the fridge or not! LOL

This morning we reached a milestone. In 11 years of inconsistent hearing aid use, this has never happened. While getting dressed for school Angela came to find me, "Don't forget my earring aids!"

Wednesday, April 09, 2008

The scariest word in the world

On Monday, a young lady who is very well known in the DS community passed away. Her name is Melissa Riggio, and she is the daughter of Steve and Laura Riggio, (Steve is CEO of Barnes and Noble.) Melissa was 20 years old.

Melissa was a role model for people with Down Syndrome, and for parents of new babies who have DS and needed to see that DS doesn't have to be a bad thing. There was a National Geographic Article written about her, and she was also a singer and song writer. This week our tight-knit community is mourning the loss of this beautiful young woman.



We parents of children who have Down Syndrome learn early on that there is one word that is taboo in our vocabulary. It's the dreaded "L" word.

"L" stands for "Leukemia".

Every parent, regardless of how many chromosomes their child has, is afraid of ever hearing the word cancer used in the same sentence with their child's name. For the average child, the incidence of childhood cancer is approximately 1-2 of every 1o,ooo children.

Unfortunately for children who have Down Syndrome, approximately 1 out of every 100 will develop Leukemia. The good thing is that for some reason, children with Down Syndrome who develop Leukemia have about a 80-85% cure rate.

For every parent of a child who has Down Syndrome, unexplained fevers, painful joints, and weird rashes (petechiae) are always cause for great concern, and they make us run to the doctor for THE blood work necessary to rule out the dreaded "L" word. About 3 years ago I had such a scare with Angela. When I brought her into the pediatrician for the 5th day of an unexplained fever, lethargy, and a few spots of petechiae, I was afraid to say what I really thought it was. I said, "I don't know what's wrong, she's just going downhill really fast. Please tell me what's wrong with her." The pediatrician knew what it was I didn't want to say. "Don't worry...you'll know before you leave here if you're going home or to the oncologist." Angela didn't have Leukemia (instead a low-lying infection from a surgical wound.) but the whole episode scared me to death.

I have a lot of friends who's children HAVE been diagnosed with either ALL ( acute lymphoblastic leukemia ) or AML ( acute myeloid leukemia ). Neither of them is better than the other. If a child develops AML, they will have 6 months of intensive chemo. If a child develops ALL, they go through a THREE YEAR chemo protocol.

Somewhere along the way I was told that it's very rare for a child with DS to develop leukemia past the age of 5. Most are diagnosed between 1-4 years of age. Now that Angela is almost 12, I've pretty much let my fear of the word disappear. However in the past week not only did we loose Melissa at the age of 20, but I've been reminded of a couple other adults with DS who've lost their battles as well. But I know it's not good to live in fear, and in fact, God doesn't want us living in fear. We're to trust him, right?

And so tonight I will hug Angela a little bit longer, and a little bit tighter. Together we'll say a prayer for the Riggio family, and for others who are close to us who's children are battling that dreaded "L" as we speak. (we know several.) If you will, please add them to your prayers as well. In fact, here's a link to our friend John's site. John was diagnosed with ALL in June of 2005, and his family is counting the days until his estimated last day of treatment, August 30, 2008.




Monday, April 07, 2008

Update on our morning mess

Warning: do not read this post if you are easily grossed out.

This day has gone right to the crapper! No kidding! First, there was the morning fiasco with Rubee. Thankfully she hasn't had any more problems today, but she's also been confined to the crate. Not taking ANY chances there!

This afternoon I had to take Angela to swimming lessons. Roman comes along because afterward we go to dog school, where I take him to puppy class and we hook up with my sitter who takes Angela back home.

5 minutes before we're to walk out the door I'm trying to convince Angela to get her swim suit on, when she says, "Eeewwww nasty! Look at Roman!" I turn to see Roman scooting his butt along the hardwood floor, leaving a lovely streak behind him. No, he's not sick, just had some stuck stuff on his butt hair that was bothering him. Before I could get to him he managed to streak about 15 feet of the entry and front hallway. Thankfully these are either ceramic or wood floors.

I throw the puppy in the tub to give him a butt bath, which somehow spurs Angela to get her suit on. Thank God! I can't wrestle her right now with a broken wrist!

We get to swimming, and carsick Roman is puking in his crate. (poodles are the most car-sick dogs EVER! He's even worse than Zurri was!) I take Angela inside, and while walking down the steps to the pool she twists her ankle, which immediately swells and bruises. She can barely walk, but still wants to swim. Coach thinks just letting her lounge in the pool might help it so I go along with that.

Swimming done, get the kid down, then back up 3 flights of stairs to get her changed into clothes, and head for dog school. Get there to discover sitter didn't show up so Angela is going to have to hang out with me and watch the class. Thankfully this is something she LOVES to do!

Now, last week Roman got a stick stuck in his throat. Took him to the vet for a residual cough and his trachea is inflamed. He still has the cough, but is otherwise fine. That is, of course, if you don't consider the fact that he's horribly car sick so puked up 4 times during class, then again in the car on the way home.

I get home 1/2 hr ago, and the house REEKS!!!!!!! It's the left over smell from this morning. I just got Angela tucked into bed with ice on her ankle and she's already telling me, "I stay home tomorrow, go see Dr. Mary instead."

Calgon....where the heck is the Calgon???????????????????????????

I love my dogs, I love my dogs, I love my dogs

Warning: do not read this post if you are easily grossed out.

UGH!!! Cleaning up the mess I found this morning was worse than ANY breeding/puppy related mess I've ever encountered.

4:30 a.m. Dean is up getting ready for work somewhere in the house. Zurri is on the bed on my feet. No Dudley around. Rubee sleeps in her crate in the basement family room. Roman is in the crate next to the bed whining to go outside. Hmmmm Dean usually lets him out when he gets up.

I get up to let Roman out, slightly irritated that Dean didn't and my beauty sleep is being interrupted. We all know how much my beauty needs improving. Roman and I make our way down the hallway, but instead of running to the door to ring the bell, Roman runs 1/2 way down the stairs and stops with his nose in the air. Dudley comes from somewhere and joins him. It's just about that time *that smell* reaches my nose.

I hear Dean open Rubee's crate as he hollers "Oh shit!", while at the same time Rubee comes racing up the stairs. I open the door to let her out and get splashed by liquid as she runs by. That's when I realize that Rubee was covered in liquid CARP from head to toe. Poor girl, trapped in her kennel in that mess.

Dean comes up the stairs, "I didn't know what the problem was till I opened the kennel. The entire inside of the kennel is covered. Rubee is "his" dog, which means "he" is responsible for cleaning up "his dog's" messes. (the other 3 he considers to be "mine" even though they're really "ours"!) "I don't have time to clean it up right now, I'm late getting out the door."

Aaahhh...lucky him! He'll also be out of town till tomorrow, so I have no choice but to tackle the mess myself. I head downstairs to estimate the damages when I realize Rubee has just tracked and dripped the mess all the way through the basement and up the carpeted stairs to the door.

OMG

I drag her kennel out to the 3 season porch, and set up a spare wire kennel that we have. He calls her into the porch and the poor dripping wet poop covered dog is going to have to stay out there where it's pretty chilly until I get Angela off to school...in 4 hours.

Dean leaves for work, and I got back to bed to have nightmares about the task ahead of me. That's when I realize I have a problem. It's too cold to bathe Rubee outside, so I'll need to do her in the tub. But Rubee is 80 lbs heavy and HELLO! I have a broken arm!

Once Angela was gone I started getting set up for the big poop removal. I let Rubee out the basement door and call her back in the front door to avoid having her walk through the entire house again. She is scared to death of the hardwood floors so I have to d-r-a-g her liquid poop covered feet down the hallway and through the bathroom. I had planned on using my good arm to lift first her front end, then the back end into the tub. Poor girl, she felt so miserable covered in carp that she jumped right into the tub herself. (this is a first!) I thank her a gazillion times over for this and hope that she gets out the same way.

With one arm not functioning very well (thankfully I don't have a cast, but instead a removable brace) I get her scrubbed down twice. There is poop everywhere inside the tub and dripping down the outsides. It is all over my chest, my legs, my arms. There are water droplets splashing me in the face but I pretend to not notice. After all, if I don't do this, who will?

When she's done I get her outside before she can shake off in the house. (never know how much microscopic poop is really left on her!) and then turn to face the next job. The cleanup of the poopy tracks through the house, the poop-painted kennel, and the bathroom that is now quite contaminated.

I discover another problem along the way though. And that is that I can't wring out the mop with one hand! Good grief!!! So I mop the floors with a dripping mop, then go back and wipe up the standing water with a towel.

I called Dean and told him, "Don't ever, ever, complain again about cleaning up a little pile of puke or a puddle of dog diarrhea!"

I have one hour till Angela comes home, and I'm going to spend it sterilizing myself in a hot shower!

Sunday, April 06, 2008

High School Musical

Angela had a GREAT time at the show on Saturday! We had even better seats than before. This time we were in the 8th row, center stage. PERFECT! I think Angela liked the show better the second time, as she was able to pick out people she knew, and she LOVED finding her new friend Dante! He plays a few different roles so costumes frequently. All of a sudden she's whisper-scream "There's Dante! A new shirt AGAIN!"

After the show we bumped into the man and woman who play Troy and Sharpay as they were making a quick exit from the theater. (they only had about 2 hours to rest and eat before the next performance.) so we weren't able to get pictures with them. But we did meet up with Dante. Unfortunately he'd had an injury during the show so was headed to physical therapy, he hung out with us for a bit, then his friend Mike (aka Jack Scott in the play) gave us a tour instead.

The ENTIRE cast was very nice. Every time we bumped into someone they'd greet Angela by name, including the sound crew. I really can't say enough good things about everyone they met. Whoever cast the show did an awesome job not only with casting the roles, but choosing people who would be great with the public as well!

Angela, excited to be going to the show!
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In front of the theater
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If you've seen the show, the cast comes in/out via these panels that spin around at the back of the stage.
Arielle Jacobs Angela Mike Mahaney Dante Russo
(Gabrielle) (Playing herself) (Jack Scott) (worm boy, Ensamble)

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During the show, Sharpay comes climbing out of this locker
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Angela was scared to death of the Wildcat mascot, but we found his head! LOL (she wouldn't go near it for a picture either.)
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This is one of my favorite pictures.
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Thursday, April 03, 2008

Sometimes I Forget

Most people know I'm a pretty forgetful person. I know that there are certain family members who get quite annoyed with my forgetfulness. Now, there are some things I NEVER forget. For example, I NEVER forget to give Angela her medication. EVER! This is because my survival depends on those little pills. I also NEVER forget to eat. Nope, my belly reminds me every hour, on the hour. I also never forget to let the dogs outside. Well, hard to forget when they're dancing in front of me with their legs crossed.

I happen to think there are two kinds of forgetfulness. The first kind is that total spaciness kind. You know..."Oh...I FORGOT there was a mountain of laundry in the basement and you needed clean underwear and socks."...or..."Crap, I FORGOT to plan dinner and here it is 5:30."

The other kind of forgetfulness is the kind that God creates. There are some things He wants you to forget about so that you can see things as they really are. Here are some things that I often forget about:

I Forget....

I forget that God is in control. No matter what, I do not get to be the boss of all things. God allows me to forget this so that I can fall on my face and allow Him to pick me back up again and let me give it another shot.

I forget that when I am in the midst of crisis, God is still here with me. Jesus sits next to me holding my hand through all of it. But just like when I fall and God picks me up, sometimes I feel Jesus give my hand a squeeze to remind me that I'm not alone in my fight.

I forget that Angela has Down Syndrome and sometimes that means she needs a little more time to do things. This makes me slow my life down a little bit, which is truly a blessing.

I forget that Angela has Down Syndrome. When she looks at me with her big brown eyes and asks, "Does your arm? Do you want a pillow?" all I see is a loving, compassionate little girl.

I forget that Angela has Down Syndrome. To me she is a vibrant, happy, almost 12 year old girl who's starting to notice boys, and likes to call friends on the phone.

But sometimes I forget the other way, and need to be reminded that Angela is just like every other 12 year old girl. Tonight as I watched her with her theater group I saw her do something she's never done before. She stood alone on the stage...in front of the entire group...and said the first few lines of her monologue (the only ones she has memorized so far) and when she came off the stage she said to me. "I'm crying." I looked at her face, and sure enough...there were tears there. What Angela was telling me (that most girls her age would try to hide) was that she was very nervous about being put on the spot, but that when she was done, she was SO PROUD of herself (and so relieved to be done) that it brought tears to her eyes.

I'm so thankful that God allows me to forget, because the reminders he gives me are life-changing.

Wednesday, April 02, 2008

An Unbelievable Night

My kid has got to be one of the luckiest kids on Earth. Seriously, things just HAPPEN for her. She's had more encounters with famous people, or been in national publications, and other things like that so many times in her life. It's just really strange!

So back in November I bought tickets for the Broadway production of High School Musical. In December or so I started digging around online to find out who to talk to about arranging for her to meet one of the cast members or something along those lines. I was able to locate one woman, but the only response I'd ever get back from her was "I'm still checking on this. I hope to get back to you soon. That's opening night here so I just don't know how busy the cast will be." The last I heard from her was the middle of February, and then I forgot about it.

In fact, I almost forgot we had the tickets. They've been hanging on the fridge for months, and you know how you just don't see things after awhile? Anyway, Angela pointed to them on Saturday and said, "Mom! Whens the show?" The tickets were for April 1st. Clearly nothing was going to happen as far as meeting the cast, but it would be a great show anyway.

Last night, shortly before we were supposed to leave for the show I got an email from the woman. "Please come find me at the VIP desk at the theater. Right after the show stay in your seat until the theater is cleared. There will be a few families staying for a short question and answer time with the cast. After that I have a pass for the two of you to attend the cast party after the show!"

HUH? The CAST PARTY with the BROADWAY CAST??? NO WAY!

We did the question and answer thing, then went to find our way to the cast party (in downtown Minneapolis at 10:00 at night. Not the most pleasant 6 block walking experience for exhausted Angela!)

When we got there, although I had my camera I didn't feel comfortable taking it out. This was clearly the CAST ONLY party, and it just didn't feel right. I had our playbill in my purse so Angela could get autographs, but I was really feeling like we were totally out of place and didn't want to interfere with their down time. Know what I mean?

Angela literally bumped into the person who played Sharpei, who was very nice to her.

And then came Dante.

If you've seen the production, Dante plays "the worm boy" in the show. Dante glommed onto Angela like glue. He was just GLOWING and it was clear that ....somehow...he was one of "us." Finally at one point he said, "She reminds me so much of my sister, I just can't get over it."

I asked if his sister had DS. She did not, but she was disabled, and she passed away when she when she was little. Clearly, he misses his sister, and at one point I thought sure he was going to cry.

Dante took over from there. He drug Angela around to every cast member, or he brought the cast members to her. He made sure everyone signed her playbill. But they did so much more than that. The cast embraced her. You may remember that Angela and I are very involved (or at least trying to be very involved...when we can keep everyone healthy! ) in theater. Angela was soooo in her element with these people!

When it was nearly time to go, Dante asked, "What are you doing on Saturday? Come to the theater after the show and I'll bring you backstage, then we can get pictures with the cast, see the costume room and stuff like that." (guess we'll be skipping the regional DS conference! LOL) When we left the cast members were all saying, "Bye Angela! Can't wait to see you Saturday!"

Needless to say, it was a night to be remembered for ever. But not only for us, for Dante as well. Who knows what God is doing in Dante's life right now. Clearly there is something in his heart, because God had Angela there for Dante last night. For some reason, he needed to meet Angela. Only God knows what that reason would be, but by his tear-filled eyes I would guess he needed to see his sister, even if it was in someone else.

I googled Dante and found his website. I love this young man. He has a heart of gold. http://www.danterusso.com/
But is it any wonder that he does? After loosing their daughter, Dante's parents started The Therese Alessandra Russo Foundation. This, my friends, is what "family", and "acceptance" and "support" is all about!

Tuesday, April 01, 2008

Winks-n-Whistles

Yesterday we were having fun with Angela, trying to teach her to wink. This one is good for some laughs!!! She used to be able to whislte (she sucks IN and instead of blowing out. LOL ) but I noticed when she was calling the dogs in that she can't do it anymore. What she does instead is even cuter.

Spring? I think not!

Here is what our house looked like this morning. This is ridiculous!!! Our first ride should be 2 weeks from now. I can't ride my own, but I can ride behind! The thing with MN spring snows though, is this stuff could be gone in two days. Whatever happens, I just want to see GREEN!!!! And HELLO! We have a TON of landscaping, house painting, etc. to get done before a big party here in TWO MONTHS! Not to mention all the dog crap that is burried under this stuff. LOL

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Yet Another ER visit!!!

Ok folks, everyone who knows me, knows I am the biggest klutz in the world. Who else would be dumb enough to break their arm naked in a robe?

Well, only a TRUE klutz would do it TWICE!!!! Ok, I wasn't naked in my robe this time, but I might as well have been.

I was getting Angela ready to go out the door for the bus (do you see a pattern here already?) when I realized I couldn't find her mittens. Since we got nailed by yet another snow storm last night, she really needed them today. You know, 52* yesterday, blizzard today. Anyway, I remembered seeing her mittens in the back seat of my car, so I was going to run out and get them quick. Being the quick learner that I am (and being a bit paranoid from my previous experience) I looked down and thought to myself, "No, I will get dressed first!", and ran into the bedroom to throw on some clothes.

I came back to the entryway, slipped my toes into my shoes and thought, "No, I will be safe this time and put them on all the way!" (you may remember that LAST TIME I lost a shoe on the ice because I wasn't wearing them properly.)

I walked outside, and when I reached the area where the death patch of ice hides under the snow, I very carefully felt ahead with my toe to see if it was slippery. Nope...it was bare pavement under there. WHEW

Got the car, went to open the door and realized I'd left the keys in the house. By this time I was in a hurry, so I turned quick to run back in the house. What I didn't know is that all 3 dogs were standing right behind me just waiting for me to trip over them. Not sure which white dog is the guilty one. I think Dudley. Anyway I ended up doing a front flip right over him, landing with a thud on my back, being careful to hold my broken arm in the air. I didn't get hurt, but as I stood up I was sorta dizzy and walked right into the corner of the house.

I heard my nose make that horrible crunching sound....and my stomach turned...and I got dizzy all over again.

My nose started to bleed....a lot...

and then the swelling began....

And then Angela came outside to see why mom is screaming in the driveway again.

By now her bus was at the end of the driveway. I sent her to the bus (without the mittens that were still locked in the car) and told her, "Don't worry, I'm fine, just a bloody nose."

As soon as the bus was gone and I felt I could walk without tipping over, I got my keys from the house and headed for the ER. They didn't do much for me other than pack it with ice. They said to come back tomorrow when the swelling has gone down so they can re-set it back where it's supposed to be. I'm kind of hoping somehow I can get a nose job out of the deal.

Some people (hi mom) gave me a hard time about posting the picture of my arm, so here's a link to a picture of my black-eyed distorted face. Lovely, huh???