Hey little GIRL!!!!!!

So a few days ago I was out running errands when Dean calls me sounding flustered. "There's a little girl in the street who just opened the gate and let all the dogs out!" 

WHAT? 

"First the dogs were barking, so I looked out and saw this little girl about 8-10 years old on her bike in the middle of the street. So I went downstairs to bring the dogs in so they'd stop barking. Just as I got to the back door, there she was at the gate, opening it! I hollered at her, "Hey, what are you doing?" and she said "I just wanted to pet the dogs."

She just wanted to walk into a yard of FOUR large dogs who are now barking their heads off because there is a stranger??? Mind you, our gate isn't even CLOSE to the street! In fact, you can't SEE it from the street! You have to walk up into the yard, and from the street the gate is hidden by a large evergreen! 

The description he gave doesn't even come close to fitting any of the 8 kids who live on our end of the block. The first thing that came to mind was that this girl has autism or some type of developmental issues that she would just walk into someone's yard full of dogs. Not only that, but she's not from our area. I told Dean, "Well, follow her to see where she lives!"

He was, understandably, reluctant to follow a little girl in his car, so he stayed back quite a way. She went to a home about 12-15 blocks away, with a yard full of kids. While I was driving home I called my neighbor to see if she saw the little girl outside. "Well, actually I did! I rarely look out to that side of my house, but your dogs were barking like someone was here, so I checked, just in time to see the girl in your yard."

Later, when I came home we went up to that house. The dad answered the door. As he's telling me the girl I described lives a couple doors down, I hear HIS daughter holler from out of sight, "She didn't let the dogs out! They were just chasing her down the street!" Dean  hadn't mentioned seeing another kid with her, so I asked, "Did you SEE her by my house?" She backpedalled quickly. We decided later she probably bolted as soon as she saw her friend head into our yard. 

So I go to the house the guy pointed out. I can hear a little dogs barking/snarling just inside the door. I've walked by this house before, and the little dog is NOT nice. I'm a trainer, and I wouldn't consider approaching this little dog. So the mom answers the door. I describe the little girl, and that the other dad said she lives at this house, "Oh, my daughter would never do THAT! It must be the little girl next door, they look a lot alike."

"Is your daughter a little heavy set. Does she have a purple bike, and was she playing with the kids next door about 45 minutes ago?" Well yes, in fact, she was. "But my daughter would never do that. She knows better than that. Someone else must have let the dogs out."

"Well my neighbor saw her do it too."

So the mom calls the daughter to come outside. Apparently she'd been watching us talk from a window. She came to the door sobbing, "I SAID I was SORRY to the guy!" When pushed only a tiny bit more she told her mom that yes, she'd opened the gate. I explained to the mom that my gate isn't anywhere near the street. She had to come waaaaaaay into my yard, out of site of the street, to open the gate. "I just don't understand why she would do that. She KNOWS better."

"Well, apparently she DOESN'T know better, because she did it. Not only that, but we live quite a ways away. (turning to the little girl) You know, you don't know my dogs. They're nice dogs, but ALL dogs have teeth, and AND dog might bite someone they don't know. My dogs don't know you, and you could have been bitten."

You know what really ticks me off? Several things!!! FIRST, the mother immediately denied that her daughter would have done such a thing. You know, I raised 4 boys. When something happened, I'm more inclined to believe the adult first! Secondly, HAD my dogs bitten this kid (I can't say they NEVER would, because like I told the girl, ALL dogs have teeth, which means ANY dog has the potential to bite.) But had one of them bitten the girl, who would have been to blame?? US!!! WE Would have been sued because our dog bit someone, never mind that they came into OUR yard.

I'm inclined to think this little girl gets away with a lot of crap. She didn't APPEAR to have any delays, but we all know that there are many things that are invisible, autism among them. I can't say in our 2 minute exchange that this girl appeared to be on the spectrum, but who am I to say. Clearly there is SOMETHING going on there, or why would she do such a thing? And, if there IS something, why in the world was she so far away? I'd really like to send a letter of warning, saying that I understand sometimes our kids do dumb stuff, but it's the parents responsibility, and that had something happened to one of our dogs we would file a suit. Because we would. I don't expect I'll ever see that little girl in our yard again, but we still want to lock our gates, which makes it difficult for our OWN child to get in/out of the yard!

The Soloist

The Soloist: A Call to Action 

April 23, 2009

Arlington, VA— The National Alliance on Mental Illness (NAMI) has launched a new Web site, www.nami.org/soloist, as part of a social action campaign with Participant Media surrounding Friday’s release (April 24) of The Soloist, starring Jamie Foxx and Robert Downey, Jr.

"The movie will help humanize people who live with schizophrenia and are homeless," said NAMI executive director Mike Fitzpatrick. "It will help people look beyond stereotypes and create better understanding of the challenge for treatment and recovery."

"The mental health care system is in crisis. After people exit theaters and leave popcorn behind, we want to translate new awareness into action."

Schizophrenia is a mental illness that affects about 2 million Americans—twice the number living with HIV/AIDS.

The Soloist is based on the true story of the unlikely friendship between Nathaniel Ayers, a street musician living in Skid Row, and Steve Lopez, a columnist with the Los Angeles Times. In a series of columns, Lopez reports on Ayers’ journey as a gifted student from the Julliard School of Music to the streets of Los Angeles, living with schizophrenia.

Court today

I don't know why I bothered putting make-up on this morning. I am not the teary type, but I was in tears in the car the entire 1/2 hr drive to the courthouse. UGH! I hate that!

Anyway, I was told by the petition intake worker a couple days ago that the plan was commitment to an inpatient chemical dependancy unit that also treats MI. That he would be held at the hospital until a bed was available to him.

So this morning I called Tyler at the hospital to let him know I would see him at court. He told me he was signing discharge papers at the moment, and that he'd be going on and then doing an outpatient treatment program.

HUH? 

This sent me into a small panic. I called the hospital social worker, and told her of my concerns about safety for the rest of the family. She was very nice, but pretty much said, "Yeah, good luck with that."

So on the way to court I kept going over what I wanted to say, and how to say it without hurting Tyler. When I got there, Tyler was meeting with the public defender. He let me sit in on that, and they were going over the court recommendations which were just what Tyler had told me earlier. He was agreeable to all of them. He's so pleasant when he's on his meds. Really, he's fun to be around when he's clear headed! I then met with the county attorney and social worker who would be following Tyler. I immediately broke into tears (seriously, I hate that feeling of not being able to hold myself together.) The county attorney told me, "Well, all the doctors who've seen him think this is the best option, blah blah blah." I was like, "Yeah, well they've spent HOW much time with him? I've been with him 20 years, and know him better than anyone, including himself." and told her of all my concerns. 

She then went over all the stipulations of the order. There are a bazillion steps he MUST follow, and if he misses even ONE, there are GOOD safeguards in place.  I won't go into the details of the order here, but I will tell you they are very stringent, and he doesn't really have any wiggle room. He did sign releases for ALL involved to have direct contact with me so I'm not in the dark anymore. I know that Tyler will read here. I hope he understands that all I want is for him to be safe. 

Since I said my piece to the county attorney, which was in private without Tyler there, I didn't feel it necessary to say anything in the courtroom. A prayer answered! The court granted the stay of commitment based on the order above. Tomorrow he'll be starting the first of many steps he has to follow. I really like his social worker, and I think we'll work well together. 

So that's my day. I came home and took a long nap!

Oh look look look!

This photographer, Cory Ryan, was at the state Swim meet a couple weeks ago. He wrote about it on his blog, and you can see an AWESOME picture of Angela (and lots of other athletes too!) cheering for herself. She is her own best cheerleader. LOL

Thank you everyone

I just wanted to take a minute to thank everyone for their thoughts and prayers for Tyler. The hearing is scheduled for Weds morning. I was told by the county attorney that if I go, I'll be asked if I have anything to say. I have LOTS to say, but I also need to be very careful. I want Tyler to get the help he needs, but I also don't want to destroy my relationship with him. I guess we'll see what happens on Weds.

Thanks again!

Ty Ty update

I wish I could share ALL the details here. Really, this should not be a secret. Mental Illness is not a dirty secret, it's a real illness that kills people. It almost killed my son last week. According to the hospital, it's an accident he wasn't successful in his suicide attempt. This is not the first time he's tried to end his life, and without help it won't be the last. 

We'll be in court later this week, hopefully getting Tyler a court order for the help that he needs. I wish I could convey to you how difficult it is to do this for an adult. Not difficult in the emotional sense (though it is hard!) but in the legal sense. If the county is successful, it will be nothing less than a miracle, and truly and act of God. Without the court order for Chemical Dependency and Mental Health treatment, it won't be long before he does this again and the outcome won't be good. 

Tyler is in good spirits though. Dean and I went to see him on Saturday and he was clear headed, and said that he's in agreement with the commitment proceedings. However he'll be given a public defender who will remind him that he has rights, and that he has a right to object. Please Lord, let this person see that in this case, that issue should not be pushed very far! 

If we're successful in the commitment, it will only be for 6 months, at which time the case will be reviewed. If the commitment is ended at that time, it will be ERASED from his record. But don't jump the gun, this is a BAD thing for it to be erased! If Tyler were to be picked up because he'd done something dangerous, or put someone else's safety at risk, the police won't be able to see this on his record, and not know what kind of person they're dealing with. Putting Tyler into a holding cell with other people while he's in a manic phase would be a really bad thing!!!! People, DUI's stay on your record longer than a mental health commitment!!! 

I have a good friend who's family member committed a horrible act 20+ years ago. He killed thier father. He also has sz, and was under commitment for many many years. Because he does just fine while he's on meds, and he'd had several years without any problems, his commitment was lifted just a couple months ago. He's now off meds because there is no longer a court order for them, NOT doing well, and he walks among us. His commitment was MI/D (mentally ill and dangerous) but now he has NOTHING on his record. Do you see why it's important for the laws to change, and that stuff to stay on so it shows up in a background check??? His family loves him dearly, but..umm...he's dangerous! It's not his fault, it's just the way his brain works, but that doesn't discount the fact that he's dangerous!

So, that's where things are at right now. Hopefully court later this week will go well.

The Connected Society

First, I have to tell you that Dean has NEVER purchased a computer. Any computer he's used has been purchased by someone else. Even the one we own together I bought, and showed him how to get to Email and the internet. LOL 

Well, Dean is now one of the most well connected people I know!

Yesterday he bought his own MAC notebook (the same one we already have at home) but better than that, he got an aircard! So here we are, driving up Cedar avenenue, and Dean is doing what he loves to do more than golf...surfing Craigslist! ROFL

He sat there saying, "Look at me! Driving through south Minneapolis while surfing Craigslist! How cool is that???" 

I reminded him, a little sarcastically, that we were in SOUTH MINNEAPOLIS, near Minneapolis Children's Hospital, which is one of the worst neighborhoods in the state, and that sitting there with is laptop in plain view could cause him to suddenly loose his new precious toy.

He put his laptop away.

He got his new toys to increase productivity with work. He spends about an hour and half every day calling in orders to his office. But with his new laptop he can just email one document and be done! So, last night I showed him lots of things on his new toy work computer. Like how to log onto the hotel's wifi network when he's out of town, and how to work the video chat function, and a few other things, so now when he's out of town for work he can stay connected to everyone he wants to. 

We are both glad that now he has the same toy that Angela and I have, and we no longer have to share!

 

Messing around

I'm messing around with my blog layout. Notice this is NOT the same as being out on my bike. Oh, and I got my hair cut too. LOL

It's a hair emergency!

10 minutes ago I decided I'm going to cut my hair off. Well, not really, but I wanted to! UGH! So I called into my favorite stylist, and whaddaya know? She has an opening in 20 minutes! So, I'm off to get a new look.

self portraits

I think it's hilarious when people take pictures of themselves to post online. Like, you can't tell their arm is sticking out to the side, and the angle is "just right" for a self portrait. I especially like the ones where they're looking off to the side to make it look like they're NOT taking a picture of themselves. LOL And don't think people can't tell that you're taking cell phone pictures of yourself in the car. 

I have tried taking pics of myself before, and I'm really good at getting just the right angle...OF MY CHIN! Then I learned to set the timer on my camera. LOL Still, those pictures are to be avoided. I really do NOT photograph well at all, weather I take them myself or not! 

I know what I need!

I need to get out on my bike! I've only gotten out for a couple 10 minute rides. Nothing significant. Nothing that would clear my lungs or my head. 

Yesterday was STUNNING here, but I couldn't manage even a short ride, though not for lack of trying! LOL My goal this morning is to (gasp) skip my workout and get out on my bike and clear some of the carbon out of Nooner's pipes!

Positive results

I'm tired of being tired, and feeling down, so it's time for me to post some good stuff! 

You may remember a few days ago (or was it a couple weeks?) I posted that I was committing myself to working out at the "Y" six days a week. Well, not only have I been doing that, but two days a week I'm taking DOUBLE classes, which comes out to a 1 hr 40 minute workout! I come out of the classes DRIPPING, which is a good feeling, because I know I'm burning calories. In fact, I'm burning somewhere around 1,000-1200 calories during my workout. I LOVE IT.

Well, I don't love the workout. In fact, I have to FORCE myself to go. During the workout I have to keep telling myself "this is good for me, it really is!" 

And, I have to say, the results I'm seeing are great! There are a couple of exercises that I couldn't even BEGIN to do when I first started, and now I can do them. 

There's another benefit too. For that time that I'm working out, my mind is completely engaged in the workout, and NOT what's happening at home. I mean, if I loose my concentration because I'm thinking about what I'm going to do with Angela in the afternoon, I'll fall flat on my face as I'm going "Around the world" on my step. There has already been more than once when I've just about fallen on my ass while doing an "L" step, and that was while I WAS concentrating. LOL

That, and I'm down 4 pounds in the last couple of weeks. Works for me!

Mental Health services in MN

I have debated about how much information to share here, but I'm so tired of mental illness being some deep, dark, shameful secret. It EXISTS, just like diabetes, cancer, and Down syndrome exist. My son tyler, who has done nothing to deserve the life he has, SUFFERS from mental illness. Paranoid Schizophrenia, to be exact. It is a horrible illness.

If you're in MN, and have a child or adolescent who has mental health issues, you've probably found that the resources here are quite good. There are all kinds of services and programs available.

And then they turn 18.

Tyler is now 20, and to be honest, I don't even know all of the services available to him, because he's an adult and can refuse all of them. Never mind he has threatened harm to a lot of people over the years. Never mind the suicide attempts. Never mind the chemical usage in an attempt to self-medicate and quiet the intrusive thoughts that are not really his.  

If only there was a court order for him to be on meds, he'd be able to survive in this world that makes horrible demands upon his sanity. I'm numb to much of Tyler's "issues", because I've been dealing with them for so long. When I see news stories of suicides in our area, I read them over and over again until they're updated with a name. Just the other day there was a story of a young adult male who, while teasing a friend, ACTED like he was going to jump off a bridge, then DID fall when he lost his balance in the midst of the joke. I was sure my son's name was going to show up on that article. Just sure of it.

So, when I got the phone call the other night, and saw the name of a local hospital on the caller ID, I was pretty sure it was going to be about Tyler, and in the time it took for me to reach for the phone I'd already started planning a funeral.

For the 3rd time, Praise GOD, Tyler was not successful in putting an end to his suffering. As he sat bleeding for several hours, the drugs in his system wore off enough that he became scared, and called an ambulance. I haven't seen him yet, but he has signed a release for the hospital to talk to me. I'm really surprised that he did. I think it's his way of telling me he loves me and just wants help. Anyway, the nurse I talked to just a few minutes ago said the injuries to his arms are "extensive" and the dressing changes take quite a bit of time. 

Tyler, Tyler, Tyler....

As I write this, I'm in tears. The thought of my child being so tormented by his own thoughts to the point he wants to end his life breaks my heart. How I want to take him under my mother wings. Bring him here so I can help him through this. But I can't do that. I can't bring him here. Instead I have to rely on the courts, and some type of review board, to CLEARLY see what the reality is for Tyler, and make the right decisions for him.

Sometimes being the mom is just plain difficult!

 

Suffering or living

If I see it an article or blog again, I'm going to scream. It's usually a sentence similar to this, "Johnny is 8 and suffers from Down syndrome." or "She has 3 children, one of whom suffers from Down syndrome."

Angela does NOT "suffer" from Down syndrome, any more than she suffers from her brown hair and eyes! Angela LIVES with Down syndrome. It is just something she has, just like she HAS a name. Down syndrome isn't WHO she is either. She isn't a "Down syndrome child." She's a child....just a 12 year old girl...who happens to have Down syndrome. Down syndrome doesn't have her...she has it! She LIVES, and she lives WITH IT.

What she does suffer from are other things. Health issues completely unrelated to DS that do make things difficult for her sometimes. But we all suffer from something, weather it be depression, or toe fungus, there's something that does bother us.

My son, on the other hand, DOES suffer. Paranoid schizophrenia torments him every day of his life. It keeps him awake for days on end, causing him to be more and more suspicious of everyone around him. It makes him question everything and every one, including himself. It  makes him stop eating for reasons known only to him. It makes him talk to himself, and become angry with the whole world and everyone in it. It makes him want to hurt himself so that the intrusive thoughts...the ones that torture him...will end. Last night, in the middle of the night, I received another of those calls. You know, when the phone rings at 1:00 in the morning it can't be good, so you don't want to answer it but you have to. Last nights call was to tell me that Tyler is suffering enough that he was afraid of himself so he called for help. I'm not really worried, since I know that he's safe. I've always been the one to find something good out of every bad situation. The good in this one is that there is a "three strikes" rule, so a new process has been started that will hopefully decrease some of Tyler's suffering, and get him the help he needs, weather he wants it or not! Angela can live with Down syndrome, but Tyler cannot necessarily live with Schizophrenia. It can kill him. It can destroy his very core, making him want to end his own suffering.

So, that's the difference between SUFFERING from something and LIVING with something. 

The Creed

"Let me win. But if I cannot win, let me be brave in the attempt."

That's the creed of the Special Olympics, and let me tell you, we had the pleasure of watching an awful lot of brave athletes at the Minnesota Special Olympics state swim meet this past weekend! What an amazing event to attend! 

Some of you may remember my posts about Angela learning to swim. Like, the first time she went under water, which was just 18 months ago! Or, the first time she went of the platform, which was just one year ago!

Well, guess what? She is now the Division 7 state champion for the 25 meter backstroke, and she missed the gold in the 15 meter freestyle by 3/16 of second! (she was beat by a young man much older than her!) I have a video of the 15 meter freestyle, but it was a VERY close race, which means it was VERY intense for the mom, which means the camera was bouncing all over the place while I was screaming things like, "big arms!" and "KICK HARDER!" and "REACH REACH REEEAAAAAACH!!!!!!" If you beg enough, I'll load the video, otherwise I'll spare you. LOL Sadly, she had to miss two events, as there was a small incident in the pool which required it close for the rest of the day. There were a lot of disappointed athletes, many who would have qualified for nationals, but instead were forced to scratch. But things happen! We made up for it by going with our friends Tanya and her mom to the Hannah Montana movie. LOL

I do have a couple of pictures of the day though. Here's Angela getting her gold for the 25 meter backstroke. (not sure why some are blurry. It's possible it had to do with the camera operator!)

And getting her silver for the 15 meter Freestlye. Notice the guy who got gold is much bigger than her!

It was about 300 degrees inside, but a pleasant 70 outside, so we went out to wait for Angela's next race. Here she is, showing off her gold.

FFF

Don't ask where I got these, because I don't think I'm supposed to have them. And yet, how can I not share???? These pictures capture Angela's personality 100%, and totally reflect the fact she'll be a teenager in a few very short weeks!

Today

Today just needs to end. Is everyone in agreement?

Angela's behavior specialist was here, and let me just say her timing was perfect. I got to see how someone ELSE responds to her. Then we stood in the driveway, in the amazing spring sunshine, while I cried. 

As she was leaving the phone rang. Remember I'm trying to get back into school? Yeah, well I didn't get in, and I'm number f-i-f-t-y on the waiting list.

So, let today end already.

Edited to add: I probably don't need to tell you that Satan is playing a real game with me and the whole school thing right now. And today of all days, when I'm emotionally "low" is when I get this news? This just made me feel like crap about myself, in several different areas. I am trying to remember that all things happen for a reason, and His timing is everything. There are some things Dean and I have discussed doing that I can't do if I'm in school. We've also discussed opening our own business, and I can't do that while in school either. And then there are still other things that have been on my heart for some time, also impossible to follow through with while I'm in school. So, if you wouldn't mind joining me in prayer, Dean and I (well, me in particular, but we're a team here.) need some guidance about the months ahead!

*just* Down syndrome

That's what I want today. Today I want a kid who ONLY has Down syndrome. Angela has so many things that are totally unrelated to DS, and today THOSE are the things driving me crazy. If we were dealing with just Down syndrome alone, life would be a piece of cake!

Angela's bus comes at 7:35, but today she didn't make it to school until 9:30. Needless to say, it was a rough morning around here, and I'm sporting a lovely new bruise to prove it.

By the time I dropped her off at school I was ready for a nap! But, instead I went to the Y for my class. When I got there, I sat down to change my shoes and the tears started flowing. I didn't even know they were there, and I don't even know why they started.  I think it was more of one of those cries that happen when things are tough and I've had to keep myself together, then when the crisis is over and I let my guard down the tears flow. So, I did what any responsible crier would do, and locked myself in a bathroom stall until I could compose myself. Once I'd accomplished that I made it through my class without any further drama. LOL

Now I'm looking at the clock, and wondering how I'm going to let Angela redeem herself when she gets home. You see, in the heat of the moment this morning, I told her, "If you miss the bus, you won't be going to SOS players today!"  That was really dumb of me, because while this would normally have worked as a motivator, there is always the off chance that it won't....and it didn't! However, she CAN'T miss SOS today because they're getting ready for a big show and she needs to practice. Now I need to think of a clever way for her to re-earn it back. This is one of those days where I wish I could think better on my feet in the heat of the moment.

Our mornings were going quite well here for a couple of months, but now we seem to have taken a step backward. Lovely. 

Product "pre-review".

Disclaimer: Please, if you read this blog with your kids, and they know Angela personally, this is one post they should not read, as I don't need it to get back to her! I've debated about posting this or not, as it does put Angela's privacy a bit at risk. But some problems moms and dads need help with! And, I know we are not the only ones having this problem. 

Some of you know Angela has a long history of UTI's, some of which get very bad. I'm also changing sheets a couple of times per night, which drives me batty! All of that goes back to the fact that she can go ALL DAY LONG without going to the bathroom. That means not only is everything backing up in her system, but when she's asleep at night her body takes that opportunity to unload! 

(Insert Calgon commercial here!)

Thanks to my friend Melanie, I found this awesome online store with great products for kids with problems like Angela. Our package arrived yesterday!

First, we purchased this watch. It's a special vibrating watch, and you can set up to 12 alarms in a 24 hour period. For Angela, the alarm tells her she needs to use the bathroom. Normally, if you tell  her to go she gets mad, says she doesn't need to, blah blah blah. But, if she has a way to be independent about something, with no PERSON telling her, then she's usually great! So, this watch does just that! Tells her to go, without embarrassing her in front of anyone. Today is her first day wearing the watch, and it's set to go off every 2 hours throughout the day. I'll let you know how it goes!

Next, we need to get her body tuned into her bladder during the night, so I purchased this product. I will tell you a friend of mine (who shall remain nameless to protect her child's privacy) used this with GREAT success. They hadn't had a dry night in TWELVE years, and have now been dry for a month! The theory behind it is that the alarm eventually teaches them to wake up to "that sensation" BEFORE the alarm goes off. The literature that comes with it (and there's a lot) says that on average it takes two months to retrain a child's brain to tune into their body. Angela could go two months without a problem, and then have months on end where I'm changing sheets twice per night. Last night was our first night to try out this product, and of course she didn't have any problems. LOL 

Now, it could be that with the watch system in place, our night time issues will resolve themselves. I guess time will tell, but we're using both systems anyway! I want this problem gone by the time she goes to camp in July!  

An open letter to Tracy

About 6 years ago, I started receiving your mail, all of it addressed to Tracy Spring. It seems you had a large student loan you'd forgotten to pay. 

Not too long after I started collecting your junk mail, I moved. I notified all the creditors and attorneys seeking your business that I didn't know who you were, and that you certainly didn't live with me, then moved to another town. They asked me to verify my DOB and social security number. It went so far as me sending them copies of PROOF of who I was! 

Still, your mail followed me.  But I see somewhere along the line your name has changed, and you're now "Tracy Sturdivant". Did you know you have an unpaid cell phone bill in the amount of $930? I know because I called the company on the envelope to tell them I don't know you, nor do you live here. They don't believe me! They asked me to open the bill. (the phone call was even recorded for my protection.) and there was the amount. Wow, you can rack up those bills!

To Midland Credit Management: Really, I have no clue who this person is. I've never met him/her, and am really tired of getting his/her mail. Between my boys who still have all their stuff sent here and this Tracy chick, I've about had it! 

Still photos

Here are some still photos Tony took of the Pirate room. I thought you might like to take a look without having to watch the video! LOL 

It's really hard to get a shot of the whole room at once! You have to stand in the closet in order to get this picture. LOL The room is "L" shaped, and her bed (which isn't in the room yet in this picture) is just past the desk, around the corner to the right. 

The mast is made with Cement Footing forms, which I glued together, and Tony painted to match all the rest of the wood in the room. If you click on the picture to make it bigger, you can see the rope that I attached at the ceiling, then wrapped down the length of the mast, then around the base a couple of times. The rope is attached the the floor and ceiling, which keeps the mast secure, and very solid. The Captains desk is an antique desk that Dean has had sitting around here forever. The floor is NOT wood. It's sheet vinyl made to look like wood. Tony was able to match it perfectly after only seeing a picture of it online! Sheet Vinyl was used because I have to be able to move Angela's hospital bed around on it without wrecking the floor, and I needed a hard surface because of clean-up issues. 

There are also a couple of things hidden in the room. Things that you have to just sit back, take your time, and look around in order to find. It's fun! One of them is the letter "A" for Angela. Dean spent 20 minutes looking around the room! But this picture shows it off nicely. I love how Tony incorporated the "A" into the room!

The little monkey! I told Angela she has to come up with names for all the animals in the room. To the bottom right you can see the Jelly Fish in the port hole.

Every pirate must have a parrot! Well, and cannons too of course.

One of Angela's specific requests was a plank, which our friend the pelican keeps warm until Angela forces someone to walk it! LOL Also notice the fish in the bottom left port hole.

What would Angela's ship be without Captain Jack Sparrow to keep guard? When you're standing in the room you can see he has bling in all the places Jack Sparrow is supposed to have bling. For those of you who requested Jack to be painted in YOUR room...ummm....I have the feeling Tony doesn't do nudes! 
Have to have a treasure map, of course! This is a map of the main roads near our house. Included are very important landmarks in Angela's life. McDonald's, Swimming, her buddies Adam and Katie B, school, the lake across the road, and "X marks the spot!" for home! Also, in the bottom right of the picture you can just barely see the whale taking a peek into the ship as he swims by. In the background, you can see another porthole that has two sea horses swimming by.

Don't pick your teeth with scissors

I love to read www.allweirdnews.com when I get bored. Here's an interesting story!

If you pick your teeth with scissors, you could wind up with an xray picture of yourself that looks like this! 

Chinese surgeons saved a man’s life after he accidentally swallowed a pair of nail scissors he was using to clean his teeth.

These are the astonishing X-rays that show how surgeons saved a man’s life after he cut his throat with a pair of scissors - from the inside.

Lin Kong had borrowed a four-inch-long pair of nail scissors to use instead of a toothpick to clean his teeth after a meal.

But as one of his friends told a joke, the 27-year-old laughed and swallowed the clippers.

As he tried to cough up the scissors, the points, which were facing upwards, dug deeper into his throat, causing serious damage.

Chen Wei, a surgeon at the hospital in Putian, eastern China, said: “When he came in, his face was twisted, pale, and [he was] sweating. The patient was having difficulty swallowing and blood was mixed with his saliva.”

X-rays showed that the scissors had completely entered the man’s esophagus, with the sharp points sticking up into the epiglottis.

Surgeons could only operate under local anesthetic, as general anesthetic would have relaxed his body so much that the scissors would have slipped deeper down the throat.

“The entire surgery took around 30 minutes. Luckily Mr Lin does not have much of a wound left inside his throat,” said Dr Chen.

Brackets

Last Thursday I had Angela's palate expander removed. Maybe we'll try it in a year, and maybe not. Clearly she's in need of some additional oral motor therapy before we do!

So today we were back to the orthodontist to start her with braces. Given the situation surrounding the expander, our orthodontist felt it was best to start slowly this time. So, instead of having the braces completely applied (or would that be "installed"?) today, she put only the brackets on her back molars. We'll go back in a month and have the rest put on. Angela has already decided she wants purple bands, but she is a girl after all, so her mind could change 75 times by then!

You can find ANYTHING on Craigslist!

I don't know how to put this delicately, but if you have a love one who is in the last days of her battle with Breast Cancer, you can save a couple thousand dollars on this casket! I'm only 1/2 teasing here. A casket normally costs several thousand dollars, and this one is only listed for $1,000. And, it's not used!

Remind me why I'm killing myself

I am tired of being fat, that's why. I've been on Jenny Craig for 15 months, and lets face it, I suck! The Jenny Craig program is great, and the counselors there are wonderful. Dean even joined with me last fall and promptly lost 25 pounds! 

Somehow, in March, we fell off the Jenny Craig wagon, and we each gained 5 pounds over the month. Now we're back on, and I'm still determined. 

Here's what's killing me. The workouts! I joined the Y over a year ago, and barely went at all. Then after the new year I decided enough is enough. Throwing money down the drain is dumb. Either I go or I drop the membership. (I'd like to add that Dean has yet to use our family membership!) So I started going. 

A month ago I started taking the "Boot Camp" class two mornings per week, but it was clear those 2 mornings weren't going to do much for me. I knew I needed to do more, but just couldn't make myself do it. They are HARD classes, and I don't enjoy them. I have to FORCE myself to get out of the house and go to them. I've gone so far as to say to someone I know is going to be in a class "Yes, I'll be there tomorrow." because I know they'll give me a hard time if I don't go. LOL

So Thursday last week I went to "Boot Camp", then Friday I went to "Body Step Express" which is all cardio. Yeah, I about died in that class. I was able to keep up until about the last 10 minutes when I got too tired for my brain to keep up with the steps. But I didn't quit, I just did my own thing. LOL Saturday I went to "Zumma" class. My boot camp instructor convinced me to give it a try, and she was new at it too, so I went. This class is more of a dance-type class that is a very good cardio workout, however I learned that I'm clearly missing a joint in my back because MY hips cannot DO what the instructor's (or other student's) hips were doing! (and to be completely honest here, I wondered how many husbands I've disappointed with my lack of hip movement????????) Perhaps my hips WERE moving, but it was just hard to see under the fat? Then I saw that my boot camp instructor was having a hard time with the hip thing too, and I felt much better. LOL

Today I went back for "Body Step Express" only the class had changed, and it was different. BUT, I liked it better. It was still a very tough work-out, but less complicated. I was able to do the whole thing...barely...and half way through the class I had to keep repeating to myself, "this is good for me. This is good for me. This IS good for me!" One woman in the class was wearing a calorie counter thingy and it said she'd burned 580 calories in that class! Holy cow! 

My goal is to be in a class 6 days per week. That will keep me in a routine (which I desperately need) and burn lots of calories. Now, if only I'd loose some weight! I have to doing this, right????

So, who did the amazing artwork?

A few weeks ago, as I was trying to figure out how to create a REAL pirate room for Angela, I came across a muralist by the name of Tony Stafki, who has a business called Walls of Art. 

I was curious how much it cost to have a whole-room mural done. I really had NO CLUE how much that kind of stuff costs! I told him how it happened that Angela wanted a pirate room so badly, and her misunderstanding and subsequent disappointment after her Make A Wish trip. Tony read the story, and emailed me back. 

People, he GAVE this room to Angela! Out of the goodness of his heart, he felt led to give her this amazing gift! 

I was a little worried about how the room would turn out. I mean, yeah...there are pictures of his artwork on his site, but still, you just never know. Needless to say, I this room turned out to be far more than I ever imagined it would be. Everything from the ships mast that sits right in the middle of the room, to the port holes with the underwater scenes (my favorite is the whale!) and even Captain Jack Sparrow standing guard at the bow of the ship! 

I cannot say enough good things about Tony and the work that he did. From showing up exactly when he said he would, EVERY time, to staying late a couple of nights when there was a time crunch. Even coming back on a Saturday to make sure everything was *just* right. 

Tony, thank you for making Angela's pirate dream come true!

Ahoy ye skallywags!

Here it is, the big reveal! I have no idea why it's so dark though. In real life the colors are rich and vibrant. The very beginning is BLACK because you're looking at a closed door. Keep watching, it's just a couple of seconds.

Ye be Warned!

The room is done, with the final paint details being completed yesterday. We're moving stuff down there today while Angela is at her dad's, so we can have the big reveal tonight when she comes home. (actually the boys are coming for Easter dinner so I'm making them move that heavy bed down for me. LOL) I CANNOT WAIT to see her face!!!!

The only problem with the reveal is the bedding didn't arrive yet, so the big reveal will have a very funky looking bed. LOL 

The closet isn't done either, as I ran out of money for shelving!  But that will come next week, and then I can move that stuff down as well. 

This whole thing is kind of funny. As with all projects I want to do, Dean thought this idea was nuts. But as he's watched it coming along he's liked it more and more. This morning I got up and discovered he was already downstairs working on the closet doors in that room. "I want it to be just right!" he said. LOL 

I do have one very special person to thank, and that's Tony! Without Tony, this project would NOT have happened! Well, it would have but not anywhere near the way it did! Thanks Tony! (link to follow later.) It's too bad the reveal is happening on Easter Sunday because we really wish Tony could be here for it. 

I also want to thank Tony's wife! He spent an awful lot of time in my basement the last couple of weeks, including a couple late nights and a Saturday, while she was home with the kids. Now Tony has to do a Pirate room for his own kids. LOL

I'll post the video later tonight, so strap on your pirate boots and come back later for a look!

I feel much better now

I got all the carbon out of Nooner's pipes. aaaaahhhhh I feel much better now! Tomorrow is another beautiful forecast, but there's a lot to get done around here. Maybe just a quick ride to the coffee shop???

How does your story begin?

This is written by my friend Meredith Cornish. Last year she and her husband adopted two children with Down syndrome from Ukraine, and this is their story. It was because of her family's journey that my heart for the orphans of Eastern Europe was stirred to the point of NEEDING to get involved. I don't know how you can NOT get involved after reading some of the stories of families who've adopted children in the same (or sometimes worse) circumstances as Meredith's kids. Hopefully before too long I'll have news of my own to share. NOT of adoption, but very closely related to it.

..................................

Two little ones laid alone in their cribs. They'd had little to eat and drifted in and out of sleep for lack of anything better to do.

The little boy's body was wracked with sickness and he laid in his excrement in a room by himself for hours until the next broth filled bottle would arrive along with a fresh rolled-blanket which was used for a diaper. His 3 layers of clothes kept him warm but were seldom changed and his cleaning was done by his bottom being swished under warm running water. Then back to bed he went for more endless hours. The door was closed as the nurses left and with no one to hear or answer his cries he often fell silent.

The little girl watched through the bars of her crib as she and her one roommate that could make eye contact looked toward each other. Without any toys, pictures, or stimulation they often laid quietly. Sometimes they occupied themselves with a soft moaning cry. She rocked herself back and forth in her crib, banging her head against the rails on each rock just to feel that something was there- outside of her self. She didn't have the strength to sit or even hold her head up nor did she have the desire to try. Her hands were her only toys and she gnawed viciously on them. Her clothes were cinched tight from her toes to her neck and her legs stayed curled without room to stretch, her toes permanently turned. Her heart beat faster and faster, her blood pressures rising, her body fighting for life as her heart tried to function while missing its entire center.

Sixteen months for the little boy... 5 years for the girl. Their story started with pain, malnourishment, little medical care, no stimulation, and a sad existence.

It's human to hear this story, to picture these children and to think "who could do this?" "where does the blame lie?" "how can this be?" And then the next questions begin, "how did God allow this?" "where were these children?" "does this still happen today?"


Proverbs 24:11-12 (The Message)
"Rescue the perishing; don't hesitate to step in and help.
If you say, "Hey, that's none of my business," will that get you off the hook?
Someone is watching you closely, you know— Someone not impressed with weak excuses." 

The reality of the situation is this: those two children were born into a society that doesn't accept their differences. It doesn't have a place- right now- for people with any form of disabilities. There is no schooling. There are no therapies. There is no childcare. There is little health care. There is little ability or hope for the mothers that birth children with disabilities to raise them at home. The economy requires 2 parents to work. Grandparents help raise the grandchildren, and that generation is even further engulfed in the idea that people with disabilities cannot survive in society. If a family brings home their disabled infant, by the time the disability is 'found out' the family will often lose their friends, be cast out by society, have little or no family support, and be considered "defective" themselves as it poorly reflects on the family.

Can you imagine... having a difficult time getting pregnant and losing the first baby to miscarriage late in the pregnancy. A second pregnancy and the married couple is filled with joy. The pregnancy shows trouble early on and the baby is tiny. They pray and call out to God to allow their baby to be born alive. At 38 weeks their baby girl is delivered in a cold, rundown hospital and they look at their beautiful new baby... then the doctor comes in and says "she'll never become anything. She can't survive with the defects of her heart. She won't be able to learn, to grow, or to have a good life. Leave her here. Go home. Tell your family that she, too, has passed away. Mourn for the child that you have lost. It's better this way. Don't tell anyone she is defective and it will not be known. You'll go on to have more children that will make you proud one day."

Three and a half years later another young family is expecting their first baby. They are young, just 24 and 25 years old. Without any complications they deliver a sweet healthy baby boy with shots of red hair and a pudgy face. One look at his almond shaped eyes and the doctor repeats the story that he has told many times. "Leave the baby and go. you will have more children that will make you proud one day."

Then the families both leave, heartbroken and believing the lies they were told. They tell their families and friends that their baby is dead. They are gripped with sadness, fear, and that little itch of unknown... is their baby still alive today? Did he live another day? Has she made it to a week old?

Meanwhile the baby is watched carefully for weeks or even months in the hospital and continues to get stronger. One day they are sent to the orphanage where they go to the infirmary to live out her "numbered days." For the girl, five years go by, the boy 16 months, in this same plain crib in the plain colored room with the nurses in plain dress and the plain broth and milk is served. One month before the girl's fifth birthday the papers are drawn up so that on the next transfer date she will be moved again. Her final move. To a mental institution a few towns over.

The nurses know the stories of the place she'll be sent. They are aware that none of the children that they've sent there have survived more than a few months or a year. They know how ill, how fragile, this little girl is and they have raised her from infancy from behind the glass window in the bed by the wall. They care for her because she is a human and deserves to live. Their ignorance is in how they treat her- without any love or contact. But their hearts still know she is alive and has a soul. With dread they know the approach of the last of her days.


This is how the story begins. The story of Emma's family, of her life in an orphanage. The story of Micah's days. The story of their parents, their grief, the love of the nurses, the lack of knowledge...

This same story is repeated day in and day out. So many children with disabilities of all different varieties are born into societies that doesn't accept them. It's not the fault of their parents, their doctors, their caretakers or anyone else. It is a society that is slowly opening its eyes to the gift of the children. A country that celebrated World Down Syndrome Day on 3/21. A country that is moving toward a more open spirit... but still has a long way to go in their socialized ways, their failing economy, and their healthcare which lags behind by a good 40 years or so.

This country is beautiful. The people are kind. The love or the children is apparent in the eyes and hearts of many of the caregivers in spite of the language barrier and the seemingly barbaric treatment.

Today there are hundreds of children in each orphanage that have no mother, no father. Dozens in each location throughout just this one country have disabilities. Their birth families may have 2 or 3 children at home that play on the playground three blocks from the orphanage, and yet they lay in their bed and wait for the next freshening and bit of broth. So many children... and next week might be that next transfer day. The day the institution's 'ambulance' goes around to the regional orphanages and picks up the children that are slated for transfer.

From place to place they go collecting the 'invalid' children that have no place in the schools that the other children will go to. They arrive at the new facility and are put into their new cribs. If they have the ability to get out, their arms are bound to the rails. If they scratch themselves or pull their hair for stimulation their arms are tied "for their safety". They're fed one meal a day and if they cannot take it from a spoon it will be the same broth or milk that they've lived off of for their first years. No health care is available. No medications administered.

One month after that 5 year old girl was slated to be sent to the institution... one month after God laid out the next part of her testimony and sent an 'unsuspecting' family to bring her home... just one month... the flu went through the institution she would have gone to. That crib "with her name on it" lay empty because she had been set free. And yet around that crib were many more... many more that died. Two of those children I've seen the faces of... one I've watched a video of. Just one month after she was supposed to be there, she, too, would be gone.

I'm impressed that you've made it this far reading, and I realize that news like this is often devastating to hear if it's the first you've heard of it. It can bring an adult to tears just considering it being their own child that went through this existence. Tonight as I listened to my son cry as he fought sleep I considered the children that have no one to answer their cries. He once was that child.

God is amazing. I realize after a story like that it may be hard to see the connection, but He is! It's absolutely true!! The world is in the state it is in because of man, sin, corruption. God didn't want for these to perish, but in a way it is a blessing that the children see only 5 or 6 years of life if their story won't be ending with love and a family. But there just may be a family out there that He has prepared for each and every child. Have you ever thought about that? That maybe He has chosen a couple from here and a mother from there to raise these babies... and He whispers it in their ear each night, and he shows them of His will by day. And do they follow?

I don't suppose that's for me to answer. Maybe it's a question for you?

I'm not saying that God has called everyone to adopt. I know that He's equipped other people to do other things to help bring the children into families. Sometimes it's praying for a child, for a family, for their life, their health, their future. Sometimes it may be contributing to an adoption fund for a child in hopes that it will help the family that God is calling to come for them to be able to follow that step of faith. Sometimes it may be financially investing in a family that's in the process of adopting and has already leaped out of their comfort zone and is trusting God to provide the funding. Sometimes it may be stepping out of your own comfort zone and reaching out to a family that is local and offering a meal, an hour of help around the house, a babysitter so they can go out (we know we have been blessed by people with each of these gifts for us and that others certainly will be too!). And yes, sometimes, it means stepping out in faith, asking the questions, and committing to adopt a special child whose futures are otherwise gone.

How does your story begin? Or maybe, more importantly, where will it go next? Will you follow God's calling to care for the orphans and help change the story's ending for one of His precious children?

This Easter weekend we celebrate the resurrection of Jesus Christ, who was crucified as He held the sins of each and every man that had lived and was yet to come. Mine. Yours. Everyone's. He battled death and the grave and OVERCAME them when he rose on the third day. He walked the Earth then ascended into Heaven where He now sits at the right hand of His Father, God.

The eyes of the children that see only a future of death... they need to know the resurrection of the Father. Their caregivers need so see the power of the Holy Spirit at work in the lives of the people stepping forward for the precious ones who are cast aside by society. The Word can be silent... but it speaks volumes. Please consider your role in the lives of orphans this Easter weekend. If you feel called, visit the websitewww.reecesrainbow.org and take a look around at the families in process and thewaiting children. Pray for them. If you feel it's your calling to donate, please do. Ask God to reveal to you a family that's altered the life of an orphan near you. Step out in faith and offer a hand. Help however you are called... but find the calling... It's there.

Nooner and Spank???

A couple days ago someone told me I have NOTHING on my blog about Nooner and Spank, other than a picture. So, let me remedy that situation!

Nooner is a 2002 Yamaha Vstar 1100. I bought him 18 months ago and have since put 13,000 miles on him, which is pretty good considering our short ride season here! Last year Nooner took me around Lake Superior on my Epic Journey (I mean all the way around, which is about 2500 miles.) Around Lake Michigan, (that was the "trip to nowhere", planned by Dean which I will never take again!) plus a lot of just riding around for no purpose other than to feel the wind through our hair or spokes! 

Here's a picture of Nooner and I, as we headed out on the Epic Journey in July '08. (I got new luggage for him this year! And a TomTom YAY!) He looks a little small in the picture, but that's just because of the angle. 

When I got Nooner, I knew that he couldn't always ride alone. That there were times Angela would want to go with me, and so Nooner would need a companion. So, along came Spank! Spank is a 1980-something California Companion Sidecar. I bought him from a guy in Ohio, and a total stranger (but really nice guy!) from the local sidecar club picked him up for me and trailered him home! Here's what the little guy looked like when he arrived.

There he sat on our front step for 8 months while I tried to figure out what to do with him! LOL Finally I scrounged up the money to make him pretty. Besides, he had to match Nooner! Then I scrounged up more money to have him mounted to Nooner, but I had to have him mounted in such a way that he could be disconnected if I wanted to ride on two wheels, and easily re-connected if I wanted to ride on 3. 

 Finally, in June '08, Nooner & Spank were together at last! 

Ready to Ride!

Edited Post:

I had started a heartfelt post for my buddies Nooner & Spank. But us bikers are a suspicious lot, and I have deleted the post so I don't jinx my first ride of the season! 

SO done with THAT!

Well, today has been an interesting day. I went to the Y, and did my class (yay me.) then headed for home. On the way school called to let me know Angela had a seizure and was not sound asleep, (she ended up sleeping for about an hour) and what did I want them to do? GOOD QUESTION! LOL After giving me the details of the seizure we talked about her difficulty swallowing with the expander, and  her frustration at not being able to eat. Yesterday she said to me, "Mrs. S. said no cheeseburger for me." with a super sad face. .........sigh......poor kid!

I got off the phone and made two calls: one to the neurologist and the other to the orthodontist. The orthodontist and I decided it's time to get the palate expander off. It's possible we could try it again in a year. Who knows. For now we're just going to go straight to braces. Her cross bite (which is what the expander corrects) isn't THAT bad. We'll just see how it goes and make decisions along the way. I called school and had her teacher relay the message, "When she gets off the bus, we're headed to the orthodontist to take it off!" I could hear her cheering in the background. She's so excited to get to eat LUNCH at school next week. LOL

The neurologist said the seizure school described is "more typical" of complex partial seizures, and we'll probably see a few before her meds start having their full effect. But they DO want me to call whenever she has one so they can make note of it, their frequency, etc. She's EXTREMELY sleepy from the depakote, and tomorrow we up the dose! It'll take a couple of weeks for her body to adjust and then she should be back to normal. 

Tonight, we celebrate the expander removal! We don't want to say too much negative to her about it though, just in case we try it again in a year or so.

Pirate teaser

Just a teaser from the Pirate room. LOL

Expander update

I'm thinking this was the worst medical decision I've ever made for Angela, and yet, it's necessary. Please know, that if your orthodontist is recommending one for your child, that Angela's reaction to it is NOT typical! She has an unstable swallow in the first place (she was on a gtube until age 3.5 because she aspirated everything.) So adding the appliance is just triggering all kinds of problems for  her. It's ALSO brought some problems to light that I thought were no longer a problem, such as her method for chewing and moving food to the back of her mouth! That's why she's having so much trouble eating food with this thing!

So, take that little problem, and combine it with the fact she's on the new seizure drugs. The kid is miserable and exhausted! Last night at swimming she did about 3 or 4 laps and was done. Normally she does 15-18 laps, plus 1/2 hour of free time with her friends. Well, last night it took her FOREVER to get into the water in the first place, because she was kind of lost on another planet. Then she did a couple of laps, then just stood at the shallow end of the pool in a daze. She didn't even want to play with her new friend J. In fact, J. was talking to her and Angela completely ignored her. I think she was just too tired to respond, and poor J. (who is only 5) was confused about why her friend was ignoring her. 

I finally pulled her out of the pool and headed for home. She took a shower, and TRIED once again to eat solid food, only to get frustrated to the point of sobbing tears while sucking down another Ensure drink. I think pudding and apple sauce are going to be staple additions around here. I wonder how she'd do with mashed potatoes? It's one of her favorites, but I know they can't have ANY lumps, and would have to be on the thinner side. 

 Have I mentioned Angela never cries real tears? She's cried more tears this week than she has in her entire lifetime! I just feel so bad for her. Last night in the car she looked at me with tears running down her cheeks and said, "Mom, it comes off for my birthday, right?" Oh man, I hope I'm right in the timing! The ortho said about 2 months, so I'm using her birthday (June 6th) as our focal point. Please Lord, let this thing be off by her birthday! What a present that would be!