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.

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!"

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.

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!

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!


In front of the theater



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)


During the show, Sharpay comes climbing out of this locker


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.)


This is one of my favorite pictures.

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.

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!

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

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???

When the dangling carrot is spoiled

Angela has been swimming 3-5 days a week since September. She has busted her little butt, to go from afraid to put her face in the water, and not being able to maintain body temperature past 20 minutes, to swimming independently 1/2 the length of the pool, and kick-boarding the entire length AND back, and working on strokes for an hour and a half at a shot (which exhausts her, but she does it.) All in just a few short months.

The past month or more has been tough to get her out the door to the pool. She's often the only kid her age there swimming with a couple older teens/adults who she doesn't interact with. We've had friends call to say they're going to be there, which gets Angela all excited only to have them not show. We've had promises of exciting things AFTER practice, which I've been able to use to get her out the door as well, only to have them fall through. (though I usually try not to tell her about good stuff until we're practically out the door for them for this very reason!)

But today was the worst....

For a month I've been dangling the area Special Olympics swim meet in front of her. The BIG DEAL of opening ceremonies. The day all her extended family was going to come watch her swim, and watch her stand on the podium to receive the coveted ribbon. The day to show off all the hard work she's put in these past 6 months.

So we get to the meet, and I need times so I can call the aunties and let them know what time to show up to watch Angela. Angela is anxious and excited. She's beaming and greets her coach with a hug. We're new to this team, so she doesn't know very many people, but she greets them anyway of course.

We look at the schedule, and don't see Angela listed anywhere. The coach is confused. The person who handled all the entries for the team isn't there yet, but surely she'll have it straightened out. The woman arrives, and I've never seen her before in my life. She doesn't recognize us either. She said she never received Angela's paperwork. I reminded her of the day she was not at practice because of a sick relative and another person was taking registrations. I handed it to that person. No..she never got it. Angela isn't registered for any events today, and no, the won't add her on. This also means she can't participate in the state meet next month.

Getting her out the door for the rest of the season is going to be tough. She's not going to want to go. What for? In her eyes, what's in it for her?

I tried really hard to contain my anger this morning, and my tears. I know how disappointed Angela is going to be, and frankly, I'm just as disappointed myself. My child DESERVED to stand and get that flippin ribbon like everyone else. She has worked so hard. And HELLO!!! I have given up 3-5 nights per week to GET HER THERE!!!! I think my silence, and the death stares that accompanied them, spoke volumes to all involved. We walked out without saying a word of goodbye. Angela was silent on the way home. I looked in the rear view mirror, to see her staring out the window, one solitary tear rolling down her cheek.

So Where's the Kid?

UGH! I'm sorry this has taken me so long to update you on this aspect of my life: MY SON IS HOME!

On March 10th the mother of the other boy called me, and said that the bus tickets had indeed been picked up, however the person who took the signature couldn't remember what the person looked like, and nobody could find the signature page. (isn't there a reason you have to sign for mail? I'm assuming they're supposed to KEEP that stuff!?!?!)

So we called and called, and neither her son nor Tyler answered their phones. Do you wanna know why?

Are you ready for it?.......................................THEY WANTED TO SURPRISE EVERYONE!!!

Good grief! They had no idea how worried everyone was, and were a bit taken aback when the father of the other kid tracked down Greyhound's dispatch office, and was finally put through to the driver, who got the boys on the phone in the middle of the Grand Canyon! LOL

They ended up pulling into town the morning I broke my arm. Talk about timing! I really needed Tyler here to help me with his sister while I was dealing with my arm and stuff. He's been a great help! And, it looks like he'll be staying here awhile. He's decided (and we fully agree) that he's not quite ready to live on his own yet. He needs to save some money, get a car, and have all those little details worked out before he makes the leap again. So, we've set up a budget for him, and a short term plan (that's all he can manage right now, short term) and we'll work through this from there.

So, the kid is HOME, and the mom is much happier!

Making Connections

Here's one very cool thing about blogging: Sometimes people from your past find you because of it! (Ok, I suppose for some that could be a bad thing, but I don't think I have any enemies out there! LOL)

Over the few months several people from my past have contacted me via my blog. Old friends from high school, a neighbor from when my boys were just toddlers, an anonymous person from my daughter's school, an administrator from a school my daughter attended as a preschooler, and nurse from a clinic we used to visit when Angela was a baby.

I love making these old connections. It tells me that Angela touched their lives when she was nothing more than an innocent baby, or just by their watching her at school and being inspired by all the hard work she put in to get where she is today.

The frustrating part in making these connections is I am often not able to respond to them. If you have contacted me via my blog, please make sure in your user profile you've listed an email address. If you didn't list one I can't respond back to you privately. If you list your email address in the comment itself, you risk being contacted by strangers. ;-)

Wordless Wednesday

Where I am has a name!

*please read my notes at the end of this article for an explanation.*

For some parents, the emotional strain is greater
February 20, 2008
Dr. Rachel Bryant


Mourning, that exquisite pain that comes with great loss, is typically described as having four stages. When a loved one dies, we can expect to experience shock, anger, depression and finally, acceptance.

Shock is usually experienced first, as our mind rushes to protect us from the onslaught of the pain that is coming. We might feel numb or as if we are on automatic pilot as we go through the motions of the day, barely feeling connected to the experience.

Anger and depression come next. They can be separate, intermingled, and moved about at very different paces and order as shock gives way to the full impact of the loss. Depression sets in when we come to the undeniable pain of the loss. It is the longest phase and encompasses the body of mourning as it means facing life without the person or experience that is gone to us.

Acceptance is the last and final stage although we don't necessarily reach this stage and stay there. We have good days and bad days, days where we think we are getting there and days with unexpected lingering tears, numbness and even anger. Ultimately, the goal is to get to the place of acceptance, and time is an ally in this goal.

Parents who have children with chronic conditions such as autism, central nervous system disorders or other developmental disorders that rob their children of "normal" childhood experiences have a unique and little talked about emotional challenge. For these parents, there is no finite moment as with a death, but rather many moments of loss at different stages of development where the loving parent sees the things their child will miss. Professionals who specialize in this area have coined the term "chronic sorrow." This does not mean that there is chronic depression about having a child with special needs. It does mean that there is a reality with which parents of special needs children have to contend. And as with mourning of any kind, it is distinctly personal, and one's own individual timing needs to be respected.

What makes this challenge different is that the mourning, or chronic sorrow, continues to emerge at various stages. There is no end point. All families have fantasies about the life of their family in general and the future of their children in particular. We hope our children will be smart, healthy, kind, and successful. We imagine their first days at school, their first play dates, their academic successes, participation in sports or the arts, always with the desire to watch their budding independence and increasing sense of competence. We also imagine other people seeing our children succeed, and our children basking in the reflection of smiles that come from close friends and admiring family members and teachers.

If a child has mild limitations, dreams may be altered to meet the specific needs of the child. But big dreams about their life and future are still attainable. This mourning can have direction and an end.

But what if those needs are profound? What if a child's needs require vigilance, therapists, special educators and doctors? What if a parent is exhausted daily from struggling to give of themselves to fill the gaps they feel in their child? And what if the gains in return are sometimes so small they are imperceptible? What then?

The intimate connection that a parent has with their child means that there is a daily awareness of their child's struggles. And when there is no road map, no sign post that says at year 5 you will be here, or at year 20 you will be there, how do you proceed? And when you're tired of hearing, "Just take it a day at a time," or have tried to explain to strangers why your child isn't behaving as expected, there can be a profound sorrow and isolation that makes you question your very worth.

My friend who has a child with autism, about whom I've written, tells me: "You know when it's hardest? When a friend comes over and their 4-year-old is doing simple things I don't know if my child ever will. That's when I have a bad day." Many strong marriages have ended because of this unique pain and the sometimes excruciating uncertainty of where this is all headed. Again, this does not mean that the parent does not experience the daily joys of their child whom they would not trade for the world, but rather that there is an underlying reality that requires attention as well.

If you are the parent of a special needs child who is struggling with fears, doubts, and sorrow, please understand that this is normal for the parent who simply loves their child. The chronic fatigue alone that often comes from parenting a high needs child can be debilitating. Realize that you are not alone. Consider seeking the support of a professional who works with special needs children or a support group. If your marriage is strained, talk with your spouse about getting some needed support. Acceptance here means understanding there is no endpoint, to the love or the struggles.

******When Angela was born, I didn't not mourn the loss of the typical baby I thought I was going to have. Being told Angela had Down Syndrome was actually more of an affirmation of the years leading up to her arrival. But the last year or so has been rough, to say the least. I think I'm just now getting to this stage....11 1/2 years down the road!!! Suddenly things are REALLY tough and I'm exhausted. Some of those "firsts" have never happened for Angela (like being invited to a sleep over, or the birthday party of a typical peer), and I'm just realizing it. I'm also able to kind of see where Angela is going to be as an adult, and it scares and saddens me at the same time.

"Chronic Sorrow" isn't something I've always felt, but it very accurately describes where I've been for the past 6 months or so. Strange that I'm just now at that point. It doesn't mean I don't love her. It doesn't mean I don't consider her a gift that we were given. It just means I'm missing some things, and it's hard some days to see that. But more than that, I think it helps others who haven't walked in my shoes, to understand what I cannot explain to them. Don't get me wrong. I don't see myself as being in a constant state of mourning, but I'm sure that I will probably pass in an out of this phase throughout my lifetime with Angela.

World Down Syndrome Day

Today, March 21, is World Down Syndrome Day. The date is significant since 3/21 reflects the fact that people with Down syndrome have three copies of the 21st chromosome. The purpose of World Down Syndrome Day is to promote diversity and raise awareness. This year's theme is "Aim High Enough." You can find out more about WDSD here.

It's Not Broken Anymore

HA! I can type! I normally type 75 wpm, and I would guess I'm at about 50 now. Not too bad I think.

Anyway, yesterday was hand therapy. Let me tell you those people are trained to torture you and be nice about it! LOL

The first thing she did was take of my bandages. This was a really weird feeling, as my arm felt VERY vulnerable all exposed to the world like that. She got to the bottom layer and the bandage over the incisions and slowly peeled them away. Now, I have seen lots of incisions without any problem. Angela has had countless GI surgeries, and I'm always removing stitches from the dogs or puppies, but looking at my own incision on my very own arm made me want to throw up. Why is that?

She cleaned all the sticky, itchy stuff off my arm, and then it was time to take measurements of my range of motion. There were several different types of movement she needed to measure and they weren't too bad, except for one. I can't turn my palm up toward the cieling. In fact, I really can't turn it at all, it just stays palm down. This is because of the small break on the radius bone, and the damage to the muscles they had to move out of the way during surgery.

I was then fitted for a brace. I asked why they do braces now, and not a cast and was told, "Well, your wrist isn't broken anymore, because it has plates holding it together. If it were a free-floating break then we'd cast it, but like I said, it's not broken anymore."

Ok, someone please tell my brain that my arm is no longer broken!

I sound like a crybaby, don't I? Well, I've never broken anything like this before and it hurts and it's disrupting my life. In fact, as soon as I'm done writing this I'm getting a haircut. I can't do my hair. Not that I spend much time with in under normal circumstances but now it REALLY looks bad!

I do have to say this though, my brother in law has RSD this is a HORRIBLE disorder caused by damage to the nerves in his leg from an injury and subsequent knee replacement. While I will have a few weeks of discomfort, he faces a lifetime of excruciating pain every moment of his life. And so, keeping that in mind each day, I'll get things sorted out and eventually get back on my motorcycle and continue on with my life.

Oh, and just for kicks, here's a picture of my arm this morning. Lovely huh?

Naked In My Robe

C'mon. You've all done it. Throw a robe on to make a trash run, or to grab something out of your car. I, for one, will never again be caught naked in my robe. Surely if I'd been fully clothed I wouldn't be typing this entry one handed!

Let us take a walk back in time to...say...Wednesday, March 12th. At 9:00 a.m. I was just sending Angela out the door when Dean called, "Don't send Angela out the door alone! There is a huge patch of ice and she's going to fall." So, I slipped just my toes into my tennis shoes, and started Angela out the door...with me naked in my robe. You know, the kind you have to re-tie every 8 seconds? We have this horrible patch of ice right on the front step that is quite large and is head injury waiting to happen. Angela has very poor balance. I held her up and skated her across the ice sheet, then watched to make sure she made it down the rest of the driveway ok.

Quick, before the bus came...because I was naked in my robe...I turned to go back into the house. I approached the ice carefully, but as you all know, once the fall begins, you're S.O.L. I could see that my head was aimed straight for the cement step, and my immediate instantaneous thought was, "ooohh Don't hit your head! You'll be out here awhile..naked in your robe!" It must have been in that second that I stuck my arm out to...I don't know, push away from the step maybe?

The next thing I knew, 3 body parts hit the ice at once. My left hip (it's a lovely shade of green now) my left cheek (cracked one tooth that now needs to be repaired) and my left hand/wrist/elbow-all-at-once as I heard a horrible C-R-A-C-K sound. The pain told me what happened. I screamed "oh my GOD I broke my ARM!!! Oh my GOD!!! Oh God Oh God!" and then I looked up at my arm (and my hand that was where it shouldn't have been)....and passed out. I'm sure it was only for a few seconds. What woke me up was the feeling of wanting to vomit. That and the cold ice against my now-bare front side.

I tried to just breathe. From where I was laying I could see Angela standing at the bus. Good..she's safe...she didn't hear me screaming. Breathe...the pain was like nothing I'd ever felt before. Breathe...

Getting up and off the ice. My naked front side had made the ice melty and slippery. Well, I'm not exactly sure how I did it, except I do remember trying to get hold of the posts on the deck railing. I was tangled in my robe, and my knees and good hand were slipping on the ice. Makes for a great visual, doesn't it? I managed to get into the house, but by then the world was spinning badly. I found my cell phone but couldn't for the life of me figure out how to open the darned thing. When I finally did I couldn't remember Dean's number. Oh yeah...speed dial.

(your difficulty reading this is the same trouble Dean had understanding me screaming in the phone.)

Dean: Hello?
Me: OHMYGODIBROKEMYARMGETHOME!!!!!!!!!!!!!
Dean: What? Who is this? Leah? What's wrong? What happened?
Me: GETHOMEIBROKEMYARMOHMYGODITHURTSGETHOME!!!!!
Dean: You broke your arm? Honey, I'm THREE HOURS AWAY! I can't get home. Is the neighbor home?

I heard "cant get home" and "neighbor" and hung up the phone. I remembered that speed dial thing and found my neighbor's cell phone on it.

Cindy: Hello?
Me: CANYOUTAKEMETOTHEHOSPITALIBROKEMYARM
Cindy: Huh? Who is this?
Me: Leah... can...youtakeme...tothe....hospitalI.....brokemyarm
Cindy: Oh..oh..I'll be right there! Right THERE!

I got off the phone and realized all 3 big dogs are running around outside, and the neighbor isn't exactly fond of dogs. The puppy was dancing around my feet trying to trip me. I hollered for them all to come in, and got them downstairs into their kennels, carrying the wiggling puppy who hasn't yet mastered stairs in my good arm.

I climbed back upstairs and went to the front window to see Angela just stepping onto the bus, and my neighor Cindy down there as well. That's when I looked down and realized somewhere along the way I'd lost my robe. Now I was just naked, with my hand hanging at a sickening angle. I headed for the bedroom and grabbed my "comfy clothes" which would be jeans and a sweatshirt. Obviously I wasn't thinking too clearly, huh? I managed to button the jeans with one hand (making any OT proud, I'm sure!) and figured out how to get the now tricky sweatshirt on. While hollering "ow...ow...ow" I pushed my broken arm through the sleeve, then pulled the rest over my head. The thought of the pain when I did this still makes me nauseous.

I looked for my shoes, but realized one was still laying out on the ice. I slipped my toes into one shoe and tiptoed outside. There sat my shoe, in the middle of the patch of ice...well out of reach. Grabbing a nearby shovel I dragged the shoe to the safety of the cement and stuck my toes in.

About this time Cindy arrived at the top of the drive with her van, but I couldn't get to her because I had to cross that darned ice, and I told her don't even try it or there won't be anyone to get us to the hospital! Somehow she coaxed me over the death patch, and got me hoisted into her huge 15 passenger van, then asked, "Which hospital should we go to?"

We arrived at one of the area hospitals, got my arm in a sling and some drugs into my system, only to be told it would be a 4-5 hour wait before I'd be seen!!! Cindy had a light bulb moment, "One of my kids had hand surgery at this orthopedic center a couple years ago, and I remember seeing an "acute care center" sign in the building. I wonder if they do stuff like this?" A couple phone calls later (quick, before I was too loopy to sign anything) we were on our way. At least the drugs were kicking in so I wasn't in excruciating pain anymore!

This place is amazing! It's called "Tria Orthopedic Center" It's been there a couple years but since this is the only area of specialty Angela has never needed, I didn't even know it existed!

To give you and idea of the type of care a person gets there, when we pulled in front of the doors, the concierge came to get me from the van! I was wheeled up to the intake area, and within just a few minutes was taken to X-ray. I have horrible memories from when I was 15 and broke my elbow and the techs forcing my arm into a position it didn't want to go. This tech was so very gentle, and instead of making me turn my arm all over the place, she slanted the table and made the necessary adjustments that way. I was then brought back out to Cindy, and almost immediately brought back to an exam room.

A couple minutes later the Dr. stuck his head in. "Oh..oops..wrong room. I'll be seeing you next. But, just to let you know, you have a really bad break and are going to be needing surgery." Then he disappeared.

GASP

He was back just a minute later and pulled up my xray. I had 3 breaks, a small one on the end of the ulna (the small bone on the outside of your arm) and two breaks on the end of the radious (the larger one on the inside of your arm) and would need a plate or two and some screws installed to put it back together. He asked when I had last eaten and was very excited to hear I hadn't eaten since the night before. It was now 11:00 (I broke my arm at 9:00) and they could get me in for a 1:00 surgery. Had I eaten I would've had to wait until the next morning!

But Dean wasn't there yet, and I really wanted him there before I went in for surgery! He ended up arriving at 12:40. Cindy said a quick prayer for me before leaving us, and we were so very thankful she was able and willing to help me that morning! Without her knowlege of Tria I probably would have gone up to 2 days before having surgery.

Eventually we were brought back and I was seated in a surgical chair. I had an IV placed, and was given some more drugs, and met with the surgeon. (and Dean got to see the xray for the first time. He turned white.) Then the anesthesiologist came in to give me a nerve block in arm. They did this by putting my arm up over my head sticking a v-e-r-y l-o-n-g needle into my arm pit. I felt electrical shock-like sensations zipping through my arm, and Dean said, "Oh cool!" as my fingers jumped around. That's the last memory I have prior to surgery. Dean later told me that after the electrical zingers in my fingers they took a bigger needle and shot stuff right into the bones of my arm. BLECH! Glad I don't remember that!

The next thing I remember is waking up in the recovery room, my head hanging on my chest, and wiping the drool off my chin. I asked for Dean and he appeared from some far away fog. We sure didn't sit there very long! I know I was in surgery for about an hour and a half, and we were home by 5:30!

That night was all about heavy drugs and lots of sleep. Well, really the next two days were. By Saturday I was off everything but Tylenol, which of course I had to overdo a bit, putting me back on drugs for Sunday. If you called during those first couple of days, it's likely I don't remember it, and cannot be held responsible for any promises of "I'll call you back"!

crack

just a short one handed note. mpre details later cuz i'm on heavy drugs right now. fell this morning. broke my wrist in 3 places, surgery to fix it. dean says what are you doing on the puter? more tomorroe. bye

To worry or not to worry....

Tonight I came home to find a note on the door, from a mom of one of the other kids that went to Ca. with Tyler. She couldn't find my number but remembered where we live (we're kind of hard to find) wondering if I'd heard from the boys. Turns out one kids dad did buy them bus tickets, and about a week ago had them sent to a UPS office near where they were staying. The tickets were for a bus home at 4:30 this afternoon. To his knowledge the envelope was not picked up. We're waiting for him to confirm this.

Nobody has heard from ANY of the boys in 10 days, which kind of has everyone worried. I did look around in the county jail system there to see if any of them had been picked up, but they're not in custody.

Now what? Any suggestions? We can't list them as "missing" because they're adults (or at least the legal definition of one!) It's very strange that NONE of us has heard anything from them. One boy's mom said he was calling her every couple of days, then just stopped 10 days ago. Exactly the same as my contact with Tyler was going. They're resourceful enough to find a phone and contact one of us, but they're also kids and if they've managed to get into trouble will avoid us. I'm hoping that's all it is.

If anyone reads this who is in San Diego County, specifically Poway, drop me a note, will ya?

What's New With the Queen?

Many of you have emailed to ask what's new with Angela? To be honest, I'm having a really hard time writing anything positive right now. Her behavioral issues have been off the charts since we came back from our trip. Actually, the trip itself wasn't so smooth as far as behavior goes but it's continued to get worse.

About 2 weeks ago we decided it's time for a medication change. The only problem is we have to start the new one and get it to maintenance level and THEN start decreasing the old one. That means that now she goes from crabby to very sedated and sleeping. UGH! Poor kid! We've had to miss a few things (like her favorite last night, agility) because she's just too sleepy. Her behavior is improving some. I just can't wait until we're done with the change.

Last week she was able to go downhill skiing for the first time, which she absolutely LOVED!!! This was a 5th grade field trip, and the adaptive P.E. teacher went along. She told me there are lots of great pictures so I'm waiting for her to send them. Angela even rode the chair lift, which confirmed that it was a good thing I didn't go along! LOL

The Special Olympics area swim meet is coming up soon, and she's looking forward to that! Can you believe it? The same kid who in September wouldn't put her face in the water can now swim 20 meters unassisted. That may not seem far to some, and she still has a long way to go before she's doing a regular freestyle (she's doing pretty much a dog paddle right now) but still she's made major progress!

The Fledgling

The Fledgling (aka my son Tyler) is coming home. You may remember my post a couple weeks ago when he decided to up and move from Minnesota to California. No money to speak of, no job, just an adventure of sorts. You know...the kind that cause mothers to go gray.

He's been calling me every couple of days or so, just to check in and tell me of their latest escapade. By his 3rd day out there he was complaining about how hot it was. By the end of the first week none of them had found a job. ("Mom! All immigrants have the minimum wage jobs!"...something we warned him about being 20 or so miles from the border.)

About a week and a half ago he called me and sounded really down. "You were right mom. I should have listened to you. How come you're always right about stuff like this? Anyway, we're coming back we just have to get bus tickets. Only problem is we only have $70 left and it costs $175 for two of us. (they went with 3, turns out the 3rd kid is staying out there.) I offered to buy him bus tickets but no, he didn't want me to do that. I offered to wire him some money so they could EAT on the trip home but no, he didn't want me to do that either.

I haven't heard from him since. His phone is now disconnected, and I know he doesn't have any money left.

And so the mother worries.

More on Big Brother...no, the OTHER one

I'm talking about THE "Big Brother". The one that watches over us all, only I really didn't realize how much! Last night I was reminded if an incident that happened a couple months ago.

Angela and I were on our way home from play rehearsal, which is about 30 miles away in Hudson, WI. It was late evening and we were on the 3 lane interstate when I ended up in the center lane behind a car that was weaving all over the place. He weaved 1/2 way into the right lane, then back to the center then slowly 1/2 way over into the left lane, and continued on that way.

I pulled out my trusty cell to call the state patrol to report the erratic driving. They asked my mile marker, and to describe the car w/license plate (as I tried to read the plate it occurred to me my vision might be getting worse. LOL) They asked me to stay on the phone and stay behind him, letting them know if he exited, of if he does anything else unusual.

After about 2 minutes the dispatcher says to me, "Did you just turn your blinker on to move to the left lane?"

Me: Ummmm....yeah?
Dispatcher: You're in the Suburban, right? Is it Silver or beige?
Me: Beige kinda.
Dispatcher: Yep, I see you.

I'm thinking? You SEE ME?

Me:(after about 15 miles) "They guy is exiting now on .....road. Holy cow! He just went way over the curb! Good thing it was a low one!"
Dispatcher, "Yeah, I saw that!"

So I followed the guy into a McDonalds drive through.
Dispatcher: Once he goes around the corner of the building, he'll be out of my sight. Can you park on the other side? I have a patrol next door in a car lot but he won't be able to see the car until it's on the street, BUT he can see your headlights, so just flash them as the car gets ready to pull onto the street.

This whole thing amazed me. They were able to watch our every move with the exception of the few minutes we were waiting for him to go through the drive-through. How freaky is that? I kept looking around for a helicopter or something, but didn't see anything. LOL Finally I asked, "WHERE are the cameras?"

Dispatcher: Wouldn't you like to know?