Stuff, Stuff and Stuff

Today was better. But I didn't really have a choice. Thrown back into life. No ones fault, just life. But really, my b u m, is great. It's weird really. Wasn't even that gimpy, if that makes sense. I have had a dull headache, all day. Three doses of m o t r i n, and still there. I hope I'm not catching Nick's crap.

I went to the Internal medicine Dr today. To check in on the happy pills. We're upping the dose, see if that helps. I took Jack and Emma, as it was just a chatting visit. When we pulled up to the hospital, where the office is, Emma said, "This is the hospital!" I said, "Yep, this is where they fixed my b u m!" As we were pulling up to valet, she said, "Are all these people getting their b u m's fixed?" Oh the mind of a child.

After the appointment, since Jack was with me, we went over to the Women's Center to visit Maternal Fetal Medicine. As we walked in, Emma said, "Isn't this where you got Jack?" heehee I'm actually kind of surprised she remembered it. We had a nice visit with our favorite ultrasound tech, and one of the Doctors. As you can imagine, they LOVE to see him doing as well as he is.I told them how I spoke in that class. Hopefully, they will refer moms to me going through some of the same stuff. It would be really cool, if we could do a special support group once a month or something. I'm going back to the hospital next week, for my post op. Maybe I'll run over again, and mention it!

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If you don't know this about me, I LOVE reality competition shows. American Idol, I'm completely obsessed. Jan can't come fast enough. But luckily, America's Got Talent, So You Think You Can Dance, and Dancing with the Stars fill in the gap!! Oh how I love watching your average person go on to greatness.

I LOVE Dancing with the Stars. I thought it was kind of dumb the first couple seasons, and then thought I'd give it a chance last season. OH MY HECK!!! I LOVE IT. I love watching the goofy stars be graceful. Watching the little clips of how hard they work, and then seeing it pay off. I am of course LOVING Marie Osmond, and Jennie Garth, and even Jane Seymour, for doing the MOM representation. They are so fun to watch. Helio- something too hard to say, is SO fun to watch, and I love Julianne from last season. If you haven't seen it, you should check it out. Seriously, makes me so happy. Don't we all just need to have fun and pure happiness. There costumes are a tad immodest, but I just try to ignore it. And most of the time, the dancers BEAMING faces, overshadow, the lack of fabric!!

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Oh, and I wanted to tell you what Parker made yesterday. I so wanted to get a picture of it, but it didn't work out. Anyway, he STOLE butter out of my fridge, and made a sculpture of a budda. That's right, and butter sculpture. I honestly didn't know whether to kill him or applaud him for his artistic abilities. I'll see if I can get him to make another one, so I can get a picture.

Me...get an AWARD???

WOW!! Thanks Lisa! I have been very reflective haven't I! Thanks for acknowledging me!! And thanks Corrie, for acknowledging Lisa! This could go on all day!

Anyway...this means a lot to me!! THANK YOU!

So now I need to nominate someone! After much deliberation...

Amy, is one of my very favorite people. I love reading of her adventures. I have nominated her, because I want her to know how much I love her, and how much I appreciate her friendship, and support!

Let's do a One Eighty...

Sorry about making everyone cry. I just have to blog what's on my heart. And that was... BIG time yesterday.

ANYWAY....

I took Emma and Jack on a bike ride today! I know...HOLY CRAP! My legs are like spaghetti, but we had a great time, at the little park we rode to. Here are some pictures...some...you know me... There are pictures of the bike, and me on it, as proof!! *rolling eyes*

I got some cute video too! There are two parts to the swinging. He was so cute!





Then...on the ride home, Emma took video. OH MY HECK...it's too funny. Shows her tenaciousness... It's 4 min 24 sec. long, so just follow this link... It's hysterical.

And thanks for all the support, and great comments! You guys ROCK!!!

The Teachings of Jack

I have this friend. Some of you know her. She's amazing, and bossy. She has been so excited about this conference. Her youngest is considered Deafblind. This conference was for parents of kids who are Deafblind. At one point during the day on Friday, she was unsure her husband was going to make it, and invited me to go with her. At the last minute he was able to go, but another friend of ours, husband wasn't. So Lisa called me, and said...and I quote, "OK, we're getting started, you better hurry... see you in a minute." I was still unsure about going. It had been a VERY long day for me, and I was tired. AND...my son is not deafblind, so I was worried about not fitting in, so to speak. I could not have been more wrong.

I went, mostly to get Lisa off my back, ( I told you...she's a bossy one) and had such a wonderful time, and learned SO much in the 3 hours I was there.

They showed this movie, "The Teachings of Jon". This is just the trailer, but VERY powerful.



Jack reminds me so much of Jon. The way he communicates, but most importantly, the way he loves, and the way he teaches us. Jack has had a profound affect on us, and so many people around us.

At the conference, they encouraged everyone to think about, and write down, the things they have learned from their child. I've been thinking about it ever since. He has taught us SO much, I'm hope I can put them into sentences.

1) The first thing he ever taught me was to believe in him. He wouldn't be with us today, if I hadn't.

2) That I'm stronger than I think. I NEVER would have thought I could go through an impending doom pregnancy. Or handing him off to an anesthesiologist. Six times. Or anything really. I have HAD to find my strength, but I'll tell you, I sure found it, and I'm still finding it, everytime something new happens.

3) Support groups are my life line. I really don't know what I'd do without them.They are all listed on over on the right. It's so nice to be able to tell them how I feel, and they get it! Or if I have a question, someone ALWAYS has an answer. They are happy to share in my trials, and triumphs. I have made the most wonderful friends from these groups. For them alone; I am thankful for Jack.

4) I've learned a new definition of beauty. I look back at pictures, and sometimes, I'm a little shocked. I notice how big his head was. How wide his cleft was. How flat his nose... is! I honestly never saw any of those things. He was and is perfect.

5) My kids have learned so much. And their friends. I love that Jack will be the boy their friends talk about when they get older. "I had a friend whose little brother who had a cleft lip...or hydrocephalus...or wasn't supposed to live." I love that my kids have gotten to know other kids with disabilities. The two conferences we have been able to go as a family, have truly changed our lives. If only to have the kids meet other kids like them, or Jack. Even better, kids who are more severe than Jack.

6) I've learned so much from other parents. Being in a room full of parents, going through some of the same things, is amazing. Mostly, that we are normal, and not alone!!!

7) True joy!

8) Miracles still happen.

I'm so glad Lisa "made" me go. I met some wonderful people, and I'm so thankful for the challenge to write down what having Jack in our family has taught us. There are of course more, and most of the things I write about here...but these are things that are in my heart tonight!

Updates and thoughts...

I've had so many deep thoughts this week, I realized I haven't given any updates! So here goes...

On being a guest speaker:

It went great! It was so fun. And people had really good questions. It's funny how when you tell a story, you don't realize what you've left out. Some were medical questions, some emotional. The professor asked, "Where do you find your strength?" How's that for a loaded question. The number one thing I said, was FAITH. Faith that he would be ok, faith that we would be able to handle it, if he wasn't. I also said how having support of family and friends makes a HUGE difference, and support groups too. I would totally be in the corner, sucking my thumb(to quote a friend) if I didn't have the support of those who have been there done that... They loved the video. I turned off the music, and let it play again, while I answered questions, so they could see the pictures again. They liked it, I think.

So, of course I forgot a couple of key points, but the most important one...not to terminate based of prenatal findings, I remembered. And, I told them about Early Intervention and how important it is, and how much they have helped Jack.

It really is amazing to me, that not only did I do well, but wasn't really nervous. Anyone who knows me can attest to the fact the old me, would NOT have done that!


On being the Sacrament Meeting Chorister:

It's going really well. So far. We've all been there together, it's been nice. Last week, Emma sat with me for the first two songs. She was cute, and so excited to sit up front! I've also had at least two people say..."SURE, I'd LOVE to sit with the kids!" One friend even said, "You don't even have to ask, I'll just do it." SO nice!!! It's so fun to stand up in front of everyone, and see my favorite people smiling at me! I also LOVE to sit up there, and watch Jack. He is so cute, and I love watching Steve with him. He loves Daddy so much!


On Emma's broken arm:

She's doing great! It smells, and is filthy, but she really isn't complaining much. She gets it off, a week from Monday. If you missed the picture before, here it is. She was SO adamant on NOT having her picture taken. She has her own mind, if you didn't know that already! So this one, I snuck in!!

She's been so excited to have people sign it, and shows it off all the time!!

She's even been great about taking a bath, she just puts her arm on the side of the tub. She even does a good job washing her hands!! I'm proud of her, she's been great! Although, her follow-up with urology, is this week, SO dreading it, I can't even tell you. I'm going to call on Monday, and see about some"don't care drugs". ugh


On the boys and school:

Nick is doing GREAT. His IEP is the BEST thing we could have EVER DONE He is struggling with old issues in a couple of classes, but the other 4, he has an A in! Math, the reason we even STARTED the IEP process, is going great! He has lots of extra help, and has had two tests now, and got an A on both!! He LOVES Jr High and Young Mens, and is just a busy little bee. He always has something going on. It's so fun watching him grow up!

Parker is doing great too! He's loving 4th grade, and has gotten really great about taking his meds, ON HIS OWN!!! YAY! Such a triumph! He's really growing up too! He does hate getting left behind, when Nick is off being "older". But that's life right! I think it's my fault. When they were little, they came as a set. They did everything together. So I recognize, he doesn't like being left behind. Hopefully, he'll be over it by the time Nick goes on a mission, or at least when he gets married! I picture him running after the limo...screaming...WHY CAN'T I COME??!! Ok, don't tell him I said that!!! *grin*


On Jack:

He's doing fine. We have another CT scan, a week from Monday. I think it will be fine, but who knows. One thing I am concerned about, is his under-bite, seems to be getting worse. His bottom teeth, completely cover his top two teeth.the middle front ones. I don't think they would do anything now, but it just adds to my worry, ya know? And his ankles are just getting worse. Oh my heck. We are currently waiting for a physical therapy consult, with our old PT, from early intervention. I'm tempted to just call up to Shriner's, and make an appointment. I think I'll wait to hear from Mike, and go from there! His OT, really wants to get some ideas, and helping him walk with his legs straighter. He walks so well, but with his knees bent. His hamstrings are pretty tight, which has always been an issue. So we'll see how that goes!


On ME:

It's been a week now, and I think the meds are helping with my mood. But I've also been really busy this week, with things that are good for my mood. If that makes sense. But... I never, at one point, didn't want to do anything. Ok, maybe a little, but I was able to overcome it, and go for it! That's HUGE!! I'm so glad I got off my butt and did something about my funk!

Also, MANY people this week, have had SO many great things to say. I encourage you to go read the comments. I especially want to thank Lisa, and Dan. You guys have helped me SO much lately. You ALWAYS have the right thing to say, and REALLY support me in everything I do. And have helped me see how great I can be! Even though I tell you, you are are mean(all the time) ;), I really appreciate it. Thanks guys!! I LOVE YOU GUYS...more than you'll ever know! I'm so luck to have you both in my life! And Steve has been great lately too, helping with the kids, and being willing to let me loose a few times. That is a GREAT mood stabilizer, getting out of the house!!! Thank You, Honey! I LOVE YOU!

Well, that's it for now. Lisa dragged me to a conference, and I really want to tell you about it, but I'll save it for tomorrow! :)

Oh, I also added another "Kid-ism"(scroll to the bottom of the page), and you can see all my Youtube videos, under those! Check it out!

Me...a public speaker?!?

I have ALWAYS hated public speaking. Which is weird. I love to sing, and perform. I've been in many performing groups, and plays. Been the lead in a few. But I hate to talk in church, or in front of a large crowd. I really think, it is because I have to use my own words. I never thought I put my words together well, and sometimes, I hate the sound of my voice.

But something changed, when I discovered I had something to say.

When we first found out about Jack, I scoured the internet, looking for some sort of hope, and support. I found out about blogs, and so it began.

The blogs I found were so comforting to me. It was so nice to know, we were not the only ones going through similar things. So I started my own, to hopefully be that for someone else. Plus it's a great way to keep people updated on the twists and turns.

So back in January, I sat on a parent panel, at the Birth Defects Conference. It was a nice way to ease in, because people just asked questions, and I would choose to either answer it, or not. Mostly did, cuz...well...I have a lot to say on the subject of Jack.

Then a friend called me last week, and asked me to speak to her Psychology class. They were studying, birth defects, and how knowing prenatally affects the parents. Um...right up my alley!!
I was supposed to go the Monday after she asked, but called her to postpone. I just could pull together what I wanted to say. What parts do I tell them? How much detail, do I give them birth defect facts, or numbers? Do I show them Jack's birthday slide show?

So I decided...to just tell the story, from the beginning. I prayed ALOT, to have the right things to say. And I made a new video. I put new pictures in, and kind of told the story. It went SO great, and while I was worried about filling up the whole time, I ran OUT of time, and I'm going back tomorrow. I'll show them the video, and the professor told them, they all had to write down 5 questions. OYE! Should be interesting! I'll let ya know how tomorrow goes. And here is the video. Like everything...It's not perfect, cuz the music is messed up in the beginning, but once you are past it... Well I hope you'll enjoy it!!

Reinvention

I overheard a couple of women talking today. I didn't hear much of it, but she was talking about "reinventing" yourself. It really hit me. I keep saying, "I'm not the same person I used to be." Like it is a bad thing. I have been so down on myself, but I need to change my thinking.

We shouldn't think it's a bad thing, if we don't get to do the things we used to do. Each life event, changes us. Whether we want it to or not. Some we choose, others a thrust upon us. Shouldn't we always be "reinventing" ourselves? Instead of whining that life has changed?

So...I need to figure out, who this new me is. Is she a mom struggling to make sure everyone is happy? Is she an advocate, for those who can't advocate for themselves? I guess it all comes back to balance.

But what I'm trying to convince myself is, sure I may not have the same friends, or even the same goals as I did before Jack. But, I have GOT to figure out what exactly my goals are, LIFE goals, not just for today or this week.

I need to REINVENT myself. And stop whining about who I used to be. I will never be her again. But it's not all a bad thing. Now I just need to meld the old me and the new me! REINVENT me. I don't think it will be hard, it's just RENAMING it. Ya know?

Who has helped shape who you are?

So Lisa, just posted some thoughts on the past. It's got me thinking too. Especially with Nick starting Jr High. I moved away, to almost the other side of the country shortly after High School. I have lost touch with so many friends from High School.

Remember in high school, thinking it would always be that way. The boy you were dating... He was the one. You told everyone you were getting married someday. Your yearbook is filled with ...You guys are so great together. And...I' m glad you found each other. And...see you at your wedding in 7 years. Then you graduate, and everything changes. You SAY you'll always be together. Best friends, boyfriends. It's hard to imagine it now. Everybody went on and did other things! Some went into the military. Some moved out of their parents house right away. Some spent the summer, desperately holding on to our dreams of staying together. I was one that actually did all of those. Well, I didn't go into the military, but my sweetie did. I have wondered many times, what would have happened, if he hadn't left.

This boy changed my life. Let me back up for a minute. In Jr High, I had two friends. And lots of bitchy girls, who made fun of me. It really was horrid. Luckily, it only lasted 2 years, because the year my class went into 8th grade, the school district, decided to put 6th in middle school, and 9th in the high school... but I digress...

When I went to High School, I was SURE all those bitchy girls, were going to tell all the kids from the other Jr High, to not like me. I know...stupid, but still. I went in believing High school would be the same. I guess about a 3 months in, I met my best friend. We were in homeroom together.

So about my sophmore year, I realized that noone had told all the other kids about me, and it was UP to me, to make friends. I ran with the choir crowd. NOT popular in my high school. But we were happy. And in that crowd, I was in the IN group, you could say. I had boyfriends, from the music department. But honestly, they all treated me like crap. Ok, isn't that high school? But when your in a relatively small crowd, ya all kind of date each other ya know? Sounds creepy, I hope you know what I mean. So for the most part, the men in my life, had all treated me poorly. Not the 10th and 11th grade boys are men, but you get my point. Maybe I picked the wrong ones, or the wrong ones picked me, then dumped me, cuz I was a good girl.

Well by my senior year, all those stupid boys had graduated. It was a whole new year! Then a boy, NOT from the music department, took a shining to me! At first I thought it was a joke. Boys outside the music department, were not my friends, let alone thought I was cute. He was SOOOO smooth. It makes me laugh thinking about it.

We started dating, and to my surprise, he didn't treat me like crap. We had a GREAT relationship.We never fought, or even argued. My best friend, got a boyfriend about the same time, and we were all inseparable. We all went to prom together, some more tan than the same others...(inside joke)

This boy taught me, I can be friends with the "cool kids", I was worth being loved, and most importantly, I was beautiful. He also taught me about loss. He left for boot camp, way too early in our relationship. But it made me who I am today.

You can't help but think what if? What if he had never "hit" on me in the hall by my locker. What if he had never gone into the Navy. I honestly wonder what kind of person I would be if it hadn't been for him.

I challenge anyone who reads this, to think back, and write up something on your blog, about a person, who you think helped shape the person you are today!

Be sure to let me know!

A week of "FINALLY'S"

Here are the contest results...FINALLY...

First of all, thanks to all those who voted for Parker, but alas a younger, cuter child won. ...toddlers... *rolling eyes* Here is the link to see who DID win.

And the caption contest. That was fun huh? I have a zillion more...If I remember, we'll play again tomorrow. That is... if I make it out of church alive. Anyway...Caption...

THE WINNER IS.....

"Yeah, really funny, I know where this thing is supposed to go. I am not amused!" by Christine!!!

So the other "finally's"...

Jack was fussy all week, in the evenings. Classic sign of over draining. Also the back of his head seems to have increased in size. Just the back, below, of course, where they measure his head circumference.
So after much thought, and worry, I FINALLY took him in. I showed them this picture, and the Dr say, "Well, it 'FEELS' ok, I think he's fine." She's right, it doesn't feel squishy. So that's good. But why is it bigger. Some say it's the light in the picture, some say, OH MY HECK, you need to call. Who knows. But I noticed it first,
caressing the back of his head.

Of course since I took him in, he has been better. Of course. I think maybe he was just getting used to the new pressure in his head. But it doesn't explain the bulge.

Emma started school!! FINALLY. She's is having a blast! I had quite the moment the first day. The last time Emma and I walked into Miss L's class, Emma was a newborn, in her car seat! It hit me so hard, and I almost started to cry, but decided, it would only embarrass her! She is so big! She is so OLD. It's just crazy. My friend was just reminding me all her kids are in the double digits! Goodness, where does the time go...

The first day, they were to bring their favorite bear. Of course I forgot, but luckily, there were some to choose from in the car! Chicken Little, and a frog. Emma chose the frog. They went around the room, and Miss L asked everyone their "bear's" name. Emma's was so unusual, she asked her where she got it? Emma said, "From the CAR!!" Oye...

Then on Thursday, they had a parade, and picnic with them. This is Emma, taking her "frog" to go down the slide.

As I've told you before, Nick and Parker both had this sweet teacher. And when we bought Emma's backpack, I had forgotten, that this teacher, supplies them with a book bag. So now, we have set out, to make her book bag, all pink and High School Musical, like her back pack! Hopefully, she'll still like it for kindergarten. You know, how their favorites change so quickly! I'll put up a picture when we get it all decorated. I ordered the cutest iron on off Ebay. She'll get the bag on Monday or Tuesday. And then begins my own personal struggle of, letting her do what she wants, and making it look "nice" ...hate that struggle!

Then Thursday, Parker FINALLY turned 10, AND got his skate board. Ever since they were about 3 and 5, the 21 days between their birthdays, has been filled whining from Parker. "When is it MY birthday?" "How come Nick got presents?"...you know stuff like that. I thought it would get better the older he gets. I guess it has just gotten different. This year it was, "Nick won't let me ride his skate board!" Although... he was MUCH more willing to let other people ride his, always with the..."See I can be nice and share"...tag...but still... He is so happy to have his OWN skate board!!



As far as the rest of the week, well you know what happened! *rolling eyes*

Sunday, I start leading the singing. *sigh* I'll let you know what happens! I do want to share this though. My dear sweet Lisa reminded me of something. Here is what she said:

"When Ethan was in NICU (Newborn Intensive Care Unit), for those longs months, I had the opportunity to meet one of the twelve apostles. He said something very curious to me, that I’ll never ever forget.

He said, and I wish I had it written down, so I could quote him word for word, but it went something like this…'It is our obligation to provide service, even if we don’t feel like the person who is asking, actually needs that service. It is not our place to question, them. It is our responsibility to help them. As well as it is their responsibility to ask. There are grave eternal consequences for those that do not ask for help. They that deny others the opportunity of service, are far worse off, than those who don’t help, those that ask.'

It still gives me goose bumps. He was so close to me, and his hand was on my shoulder, and I didn’t just hear what he said, I felt it."

Thanks LIS!! I'll try to remember that...and try to FINALLY swallow my pride, and ASK!!!

Free Agency stinks...

Warning: This is very religious!

"Freedom for most people of the world means “freedom from” the absence of malice or pain or suppression. But the freedom that God means when He deals with us, goes one step further. He means “freedom to”—the freedom to act in the dignity of our own choice." F. Enzio Busche, “Freedom ‘from’ or Freedom ‘to’,” Liahona, Jan 2001, 97–99

I have made this choice many times. When I was a youth, I was counseled time and time again, "Make the choice now". Whether it be moral, or smoking, or drinking. Sure, I made the choice, I wasn't going to do things that were harmful to me. I went to church, and don't ever remember, as a youth, NOT wanting to go. I suppose, it was never an option to go or not. My Dad, most of my growing up, didn't go. But I honestly don't remember thinking, well I can stay home if he is. My mom may tell you different, but that is fine, she usually does. *smirk*

When I graduated, I went off to school. I went to be with the mormons. So again, going to church was what we did. Sure it made me happy, sure it helped me make right choices. But everybody went, so...so did I.

I had a good friend who went on a mission, and get sent home for having sex. We talked many times about Free Agency, and how you just need to make the choice, and deal with the consequences good or bad. We talked about how it's just easier to do the right thing, once you've made the choice. When your friends say, "Let's go out drinking...you just say no!" You don't have to think about it, the decision was made years ago.

I remember when he was excommunicated. He couldn't understand why they took everything away from him. I said, well, you made a choice, and it was the wrong one. His wrong choices affected many people. His family, cuz he was sent home dishonorably. The girl he had sex with. His missionary companion. And me. We dated, but were not dating when he left, we were friends. I watched him go through this, and how painful it was. ONE stupid choice, lead to years of pain. He married the girl, and was MISERABLE. Seems to me he called me from a closet once, she was very controlling. But I digress. He has since been rebaptized, and remarried, to a wonderful girl. I haven't talked to him in YEARS, but think of him and his free agency often.

Back to me. So then I went and met a cute boy. He wasn't a member of the church, but he sure was cute. We dated off and on for about a year and a half. I wanted to get married he didn't. I wanted to get married in the temple. He didn't even want to go to church. So I left, and went to California.

He didn't like that I left, and decided if he wanted me, he better start using HIS agency to make right choices. A year later, he asked me to marry him. He had been making right choices all that time. Funny thing is, I wasn't making very good choices in California, but it all changed for both of us, we were married in the temple, and life was grand.

We kept making right choices, and some wrong ones, but never wavered in our faith. Now we are a family. Last year, was trying. On faith, on going to church. We were in a new ward, and it was different. The people are different. The ward we moved out of, we had been in for 12 years. We grew up in that ward, we had 3 kids in that ward. It was family. It was REALLY hard to start over.

When we were told Jack wouldn't live. We had faith he would. We grew stronger as a family. Then when he was born, and was "fine", and we had to keep him home alot, it started. Suddenly, church was an option. Not CHURCH, but going. We were given such a miracle in Jack. I felt guilty for turning my back on church. Not that I was turning my back on anything, but the kids, learned...church was an option. If Mom doesn't go, we don't have to either. I decided a while ago, maybe beginning of the summer, it was no longer an option. We were falling apart, and needed the spirit back in our home. So...I decided that. See... free agency.

So...I struggle with them at church. I would GO but then let them go home after primary. This new ward, has Sacrament Meeting last. Well, yesterday, I decided, I wasn't going to let anyone stop me from going, and STAYING at church. That was a mistake. Satan was in charge. Then it happened. "We are making some changes. We'd like you to be the new ward chorister."

My heart sank. My eyes fill up with tears retelling you. This is BY FAR my favorite thing to do at church. BY FAR!!! It entails, leading the singing, for 3 sometimes 4 songs during the service. I get to pick them, and stand up and see everyones smiling faces. Why does my heart sink you ask? Because of Free Agency, I am sometimes at church alone. I have a 12 yr old, who is now passing to sacrament, and isn't sitting with us for 2 of the songs. I have a 10 yr old, who teases the 4 yr old incessantly, and my sweet baby. Who, by the third hour, is done. I am scared to death, at the prospect of doing this alone. But will I really be alone? Maybe this is just the thing the boys need to take some responsibility.

Ya know, I told you before, my Dad didn't go to church most of the time. My Mom played the organ. One of our funniest childhood memories, is the glares from the organ, when we were being too rowdy. But we were older. And there was no baby. I told the man who offered me this "job", my Mom did it, so can I. But can I? I think the Lord thinks I can. Otherwise, He wouldn't have "mentioned it" to anyone. Hey, I can do lots of things. I can survive 6 surgeries, on my sweet baby. I can survive 6 trips to the ER in 2 months. I can survive my mother. ;) I can survive the black cloud that has taken residence over my house. I can certainly survive leading the music, while my kids are embarrassing themselves. If I have to hold the baby, so be it. RIGHT??? So I'm invoking MY Free Agency. I have been given the freedom to choose, and I am choosing to be happy, despite what people around me are choosing.

I'll let you know how it goes...

July Yippee, and more stress...

I told you I've been crawling out of this hellish life/hole, I've dug for myself, right!Well...

I would like to announce to the world wide web: I have made dinner AND kept the kitchen clean for almost a week!!! I just couldn't contain myself!

I seriously deserve a medal!! I've been in that...fix something for Emma, make Jack a bottle, and the rest fend for yourselves. Or ...pizza, chinese, or Arby's. I know...it's sad. And...eat it walking around the house, or sitting on the couch, or on the floor, on a blanket sometimes. There were NEVER an clean dishes, cuz emptying the dishwasher is a boys' chore. So it was emptied over time as you needed something.

So this week, I decided to turn it all around, and Steve asked me to! :) We have had a meal, at the table, with REAL plates, and a clean kitchen at the end of the night, for a week.

It's been hard, but so worth it! Thanks for letting me share!!

~*~
So... Nick is all registered for school. UGH! We've already had a problem. As I told you before Nick got an IEP at the end of last year. Part of it includes a very cool class, every day, called applied skills. Well, it wasn't on his schedule. *sigh* Which means, the "assisted ed"(instead of special ed) teacher hasn't looked over Nicks schedule. We talked to, NOT, his guidance councilor, and she is fixing it. (she was available, and his was not-they go by alphabet) But it does make me nervous. If it's starting out this way...ya know? I';m going to a workshop tonight, about getting the most out of your IEP, so I'm hoping that will help!

I'll keep you posted on that.

~*~
Also, my neighbor, invited Parker to go "camping" with them. It is for 3 days, and about 2 hours away. They are going to Bear Lake, with a bunch of people from her mom's work. And she told me, a lot of those people drink(not lemonade and soda) and such. We decided not to let him go. I feel so bad. I know how much he wanted to go, I want to go! I just don't think he is old enough to go away for 3 days. He is also very impulsive and distracted. He wanders off, and doesn't even know he did. He also has been dealing with panic attacks. They have gotten better, but you never know when one is going to pop up. AND he has trouble sleeping. He has slept over at their house a few times, and come home at 2 am, cuz he couldn't sleep and had a panic attack! I know, he's almost 10. But he just isn't ready. I'm trying to "go with my boobs", and trust my mommy instinct. But he is SO mad, and hurt. I don't know. Any insight you might have would help. Even to validate me!!

~*~
Well, I'm off to PTA meeting, to official start the school year. Last year I brought someone to make sure I don't sign up for stuff. This year, I'm going it alone. Wish me luck!!!

Ok...enough sulking...CONFERENCE REPORT!!!

Ya know how sometimes, it's so bad, and has been so bad for so long, you just don't have the strength to get out. Well, sorry you had to witness it, but I'm crawling my way out.

And I think I'm ready to tell you about the conference! This may be long...

First off...It was everything I wanted it to be for the boys. Nick and Parker. They got SO MUCH out of it! They got to go to some great classes. How to handle a bully, signing classes, how to make the most out of school. Nick went to a Transition one, about getting ready for Jr High. They each got to do an art project about, "What makes you unique!" They had a blast! Made lots of new friends, and Nick even found puppy love! SO CUTE!

Steve and I, collectively, went to all the classes. Emma, was being hard the first day, and Jack needed a nap. So we switched off. The second day, I spent more time networking, and connecting with new and old friends, and talking to vendors, then in classes. But Steve went, and these were mostly info classes anyway.

The vender's were great! These guys, are changing the world of closing clefts. If I was in charge, they would be cheaper, but hey, I can't be in charge of everything... I even said to the vendor, this makes me want to have another baby with a cleft! Just for the fact that it makes taping so much easier. He told me later he told his boss I said that. Maybe they'll use it on new fliers! Ya right. Now they just need to figure out what to do about nasal stints!! I told them, and they are getting to work on it! *grin* They also have a GREAT product for closing wounds! Check out all their stuff!

This product I was MOST excited about! I wish I had a better grip on how to get it at PCMC. I told the guy demoing it, I would be willing to come to his presentation to our Docs, as a parent. So we'll see! One of our plastic surgeons on the craniofacial team is looking into it. I'm hoping it will go in at the hospital. It has SO many great applications. I talked to him quite a bit. I'll let you know how that goes! Check it out if you haven't. I think it would have saved Jack at least one or more procedures!

Just an overview/Jenny version... They take a 3D picture, and get a mathematical version with precise measurements of the distance between two points. For example, the eyes, or the length of the nose. When measuring the nose, it will give you two measurements. From the first point, right between the eyes, to the second point just around to the tip, straight. The other measures all the bumps and ridges! SO COOL. We did Nick, and Jack. It was amazing, well not really, but the difference between their straight and bumps numbers were so different. Jack's numbers were almost the same. Nick's were quite different. They can also measure mass. Whether it be the cheek, or a breast needing reconstruction.

They also take the CT scan, and meld it with their picture. Then they can move things, and it will tell them all the soft and hard tissue that will be affected if they were to move it that far. For instance, a Jaw extraction. They can map out ahead of time, how far to move it, and know how far is too far. Again, I could see this would have maybe helped Jack. We didn't know until he was IN surgery, that he couldn't have the full lip repair. With this system, maybe they would have know ahead of time. Of course it's all hindsight, and we'll never know, but they can also measure for appliances. They use it for helmets all the time. Jack had to have two molds done. This would eliminate having to take a mold!

ANYWAY...sorry to go off about the 3D MD. It was just so cool! I hope I can be instrumental in getting one in Utah!

Ronald Strauss was one of the presenters, and I believe, we were meant to meet. He and I are going to change the world. Ok, I'm dreaming big, but...HE WANTS TO HEAR MY STORY!!! Our prenatal story. He headed up a discussion, entitled, "Early Starts: Implications of Prenatal Diagnosis for the Care of Craniofacial Conditions." Um, do you think I had anything to say!? maybe a little. We talked after, and he asked me if I was a writer. I told him a little about this here blog, and we exchanged contact info! I'm so excited to have found the person who will help me. I feel like I have won Miss America, and I can talk about my platform!

DON'T TERMINATE BASED ON PRENATAL FINDINGS!!!

I look at Jack now, and can't believe I even considered listening to them. I was just trying to find in the old blog, where I talked about it, and got sucked in. Wow. It's kind of hard to read it, and kind of therapeutic! Weird...

Let's see...what else...OH...

"Hey, Where did our life go? Nurturing a Family Life and A Couple's Connection: A Field Guide to Life After Crisis." Anyone think this one applies to me and Steve?? Ya know, I have to say, the biggest thing we got out of this class, was that we are NORMAL!! Everybody feels this way.

They was a workshop on Dental care with a cleft, and a Parents Guide to bullying. You know, how to make a kid feel REALLY bad! NO... it was GREAT and the teacher was great too!!

There were 2 key note speakers. The first day was Dr Strauss talking about social stigmas, with facial anomalies, and how to help kids with them. Then he showed us a little bit of a study they are doing with teens, and how they handle comments, and stares. They had the same situation, and then changed how the kids handled them. THAT was awesome. It's all in how you react. You can get mad, and offended, or make it an opportunity to educate!

The second day was Cindi Broaddus. Here is an interview with Larry King. She was so neat. Sorry to use that word, but she just was. She has such a great attitude, and outlook on life. Enjoy reading about her!

Tuesday, I had been planning on going home after lunch. We had to drive straight home, and it is 7 hours with no stopping. I told the head of the conference we were leaving, said good bye to a few other people, and the kids BEGGED to stay! *sigh* The last 2 classes were about fighting insurance companies, and then a medical panel answered a lot of questions! Both were great! The kids had fun playing with the Child life specialists, and learning about hospital stuff. They got SO MUCH FUN STUFF! Stuffed animals, hospital stuff, all kinds of things.

Then they had an ice cream social. YUM! The Disney Store had donated a Plush toy for every child at the conference. And we got a gift bag for the family! WOW! This was full to the brim! It had craft stuff, and toys, and dental floss, and toothpaste, and toothbrushes! We joked we'd need a u haul to get all of it home! I'm so glad we stayed. We got to say proper good byes. We headed out of Vegas at 6:00 pm. UGH! We only stopped once! Believe it or not! We had dinner in St. George, and drove straight home from there! The kids slept most of the way, and we got home around 2:30 am. YUCK! Jack unfortunately, was wide awake. But finally went back to sleep around 3 ish.

I'm still sick to my stomach about my pictures. Maybe they will be saved, but I don't have high hopes. I know lots of other people took many, and I've put out a plea for them to share with me!

As I told you before, we didn't get to do anything touristy. We were not only low on funds, but time. The conference kept us busy, and then we were pooped out at night. I did take the boys down the strip Sunday night. And Parker fell asleep! *rolling eyes* It was just as well, all the naked butts on the cabs, are hard to avoid driving down the strip! UGH... there are half naked women EVERYWHERE!!!

So sorry about my mood last time I posted. But I hope you enjoyed my recap of the conference!

Cookies

Well, got the kids packed. And it was NO small feat. Emma keeps getting clothes to wear out of her suitcase.

*sigh*

Anyway ... Parker wanted to make cookies tonight.

This is what he made....

Before

After

Do YOU think he's excited!?!

Vacation?

This weekend is the first family vacation we have had since we got pregnant with Jack. If truth be told, ON our last vacation, was when we got pregnant. I know, TMI. ANYWAY....

We are heading to Vegas! But this isn't your normal family vacation. We are going to a Family Conference, but we will be split up. Steve and I have classes to go to. Nick has his age group, Parker has his, and Jack and Emma will go to kids camp! You can see our whole schedule at print program. I am excited for the boys, Nick and Parker, to get to do things, and learn, and meet new friends. But I'm nervous about them not having a real vacation. We don't have much time. Steve has taken so much time off work. Last week alone! So...

We are heading out of here on Sat. We are staying in St. George, before heading to Vegas. It's about a 7 hours drive to Vegas, 5 to St. George, WITH NO KIDS!! People have questioned, why stop in St. George. Well, my original answer was to break up the drive. As I have thought about it, Saturday will be our family day. In a perfect world. We'll get up bright and early, and head out before 8:00 am. Maybe even Friday night, if funds pan out... I'd LOVE to drive over to the Grand Canyon, but I'm sure that won't happen.

We'll be so busy in Vegas, I'm really looking forward to Sat. being just us. If we went straight to Vegas, we'd be with all the conference goers already. This way, it's a vacation before the vacation! I REALLY hope it will bring us back together. I'm tempted to leave my laptop home. I'm sure that won't happen though...*smirk* I just want to hang out with my family, ya know? At home, everyone is doing their own thing. Going their own separate ways, sitting in front of a box.

Emma is getting better everyday. But evenings are still hard. I just found out today, that the kids camp/child care, will be "manned" by moms, and respite workers! I feel SO MUCH better knowing that. I knew, they would have people in there who can handle kids with special needs. But it was confirmed this morning. And ya know, the whole conference takes place in a small area of the hotel, so it's not like we'll be in another building or something.

Wish me luck on packing for 5 people. Steve told me last night all he needed was a shirt and a pair of shorts, and he was set! *rolling eyes* My stomach flips, thinking about packing. Emma started yesterday. *rolling eyes again* I'm making my lists, and checking them twice, and then again! I'm sure I'll forget something. Let's just hope it's not anything too expensive. Last time, when we went to Logan, I forgot Jack's bottles... *sigh* Had to turn around.

Things I want to do in Vegas:

~ CVS I really want to go, but I won't die if I can't. It's an emotional thing. There is no CVS in Utah, I know, I'm a dork.
~ In and Out Burger! Oh my they are yummy! I think the boys will love them!
~ Shark Reef. We went when Emma was about 2. It is SO fun. My favorite part is the jelly fish!

I know, short list, but I told you, we are JAM PACKED!!

Wish me luck on bringing my tech dependent family back together... it's gonna be an adventure!

Summer rain!!

I LOVE SUMMER RAIN!!!! I always loved running around in it when I was a kid. Enjoy a bit of sunshine at our house, as it rained!!!

Oh the cleverness of me...

Today is SO MUCH BETTER!!! Her urine came back normal. But the nurse suggested giving her a shallow bath. Of course she refused. So I put Jack in, and she soon followed!

I also put the ditropan, and miralax in her choc milk, and she drank it ALL!! She SO MUCH BETTER!! Funny story about the miralax. I did it last night too, she drank a little and walked away. Well I walked past her drink later and it was gone. I knew Emma didn't drink it. I called out to the house, "Who drank the rest of Emma's milk?" Nothing. I started laughing. "I hope you know there was medicine in it!" Later in the evening, Steve says, "Um, what was in Emma's milk." I said, "Well, you bowel movements will be much softer!" Oh my...too funny...

So it's looking up for Emma.

Jack on the other hand...his rash is just getting worse. Now it's bleeding, and oozing. I've started giving him motrin, cuz he is in so much pain. It is just so sad. I've tried everything. Airing out, got pooped on; cotton balls with baby oil, just got worse; acidopholus in his bottles twice a day, nystatin on his bum, no wipes, triple paste AND vasoline. The only thing I haven't tired is cloth diapers, cuz I don't have any anymore. *sigh* I'm taking him to the peds tonight at 6:00, hopefully he has a grand idea. But really is there a prescription paste better than a $27 jar of triple paste!? At least he's happy when there is no poop on him. That's something! And he had a good nap this am.

Pray for his bum to get better...thanks!