I've Told My Kids Everything

I was 12 when my dad was diagnosed with lung cancer.  I over heard them telling my grandma about it one weekend.

2 almost 3 months later they finally told us.  I went through hell for those months knowing that this was going on but feeling like I couldn't say anything because I wasn't supposed to know.

Even after we knew he had cancer we weren't told anything.  We were never told that the doctors told him even doing chemo wouldn't get rid of the cancer.  It would only give him a few extra months.

This was and still is very hard for me because I have so many unanswered questions.  My mom has answered some of them, but she still won't open up about other things.

I refuse to do that to my kids.  I have told them everything that's been going on with their dad from the beginning.  In August 2009 what was supposed to be a doctors appointment at Stanford turned into 2 weeks in the hospital, him coding (the kids were in the room for this), having pacemaker replaced, and shocking him to get his heart out of AFib.

During that time the kids were staying with a friend of ours.  I found out that he was telling the kids some off the wall updates.  He didn't and still doesn't feel like the kids should know what is really going on.

I didn't agree with this.  I was pissed off when I found this out.  The kids were in the room when Tin Man coded.  They were sitting on the bed with him.  They were scared and wanted to know what happened and why it happened.  As soon as I knew myself, I told them.  I didn't and still don't want them to feel like I'm keeping things from them.  I learned the hard way that when our questions aren't answered our imaginations fill in the blanks.

Even now both kids have watched videos of heart transplant with me.  We've taken the kids with us to meet the doctors and so they can ask the doctors questions.  Both kids have also sat down with the transplant surgeon and had him explain to them the process from start to finish.

This friend still does not agree with this.  He thinks we are scaring the kids and they are going to end up needing therapy because of it.

I spent most of my teenage years in therapy trying to deal with the death of my dad and the year leading up to it.  I'd rather be open with my kids and them have the truth rather than their imagination's version of the truth.

The Start of a New Me

Last weekend I went out with some friends.  We had a girls night out and then went to see the new Twilight movie.  It was a great night and something we really need to do more often.

The down side was a friend of mine got a new phone and insisted on testing out the camera on it.  Its been a while since I've seen a picture of myself.  Let me say I was NOT happy.

I knew that I have gained some weight since all this stress started, but I hadn't realized just how much.

I had planned on starting last week, but between dealing with some things that came up with Sugar Peas and Thanksgiving, it didn't happen.

That stops now.  I have 3 weeks before the kids go on winter break, so I'm hoping to use the next 3 weeks to help me get into the habit of waking up every morning and jumping on the elliptical.

I talked to hubby about me getting a gym membership when we get our taxes back.

If you know of any good weight loss blogs or websites please feel free to leave me a comment.  I'm looking for new ideas and all the support I can get.

Remembrance Journals

November and December are hard months for our family. November my aunt passed away 4 years ago on Thanksgiving. It also happened to be Warrior's birthday. Then Dec 20th that same year my step father passed away. Then November the next year my grandma passed away. Then this past April my other grandma passed away.

Having so many deaths in a years time is hard on anyone, but its especially hard on kids.

My step dad's death was extremely hard on the kids. Not only was he their Papa, but also they were there and saw it all happened. I was an adult and had a hard time dealing with what I saw.

After that night I was trying to find ways to help the kids cope with what happened. I found this great journal for the kids - Angel Catcher for Kids: A Journal to Help You Remember the Person You Love Who Died. The kids loved being able to write memories they had with their Papa. They loved it so much they asked if they could have one for each person.

My dad and my husband's dad both passed away 17 years ago. 4 years before Warrior was born so they never got to meet any of their grandchildren. Even though Warrior never got to meet him, he's extremely sad about this. So many of the kids talk about things they did with their grandpa's and my kids don't get that. So we bought them each a journal just for their grandpas.

Instead of it being a remembrance journal they use it as a I wish I could journal.  They write about things they wish they could do with him or things they wish he was here to see.

They also have Good News journals where they share good news with our loved ones that have passed away.  Since they aren't able to call them up on the phone, they write to them in the journals instead. 

I did this after my dad died.  I had so many things I wanted to share with him but he wasn't here.  The psychologist that I was seeing suggested I do this.  I thought he was insane at first, but it was a great way for me to talk to my dad.  I still have the journal and the kids and I have read it together a few times. 

They also have the journals to write about what's going on with their dad.  Both kids love being able to talk to people about what's going on with their dad and the importance of organ donation, but they both are still kids.  They have times where they are angry and don't understand why this is happening to their dad and not someone else.  The journals help them get out the feelings they don't want anyone else to know they have.

I'm hoping when they are older they will be able to look back and see just how great they are and share these journals with their kids.

I Am Thankful For

I have many things to be thankful for this year.

My family
My awesome friends
My husband's great doctors and their awesome nurses

There are so many things that I'm Thankful for and don't even know how to put it into words.  The last couple of years have been so hectic and stressful.  There have been so many great people that have stepped in to help our family.  Some people we've never met.  Some just heard about our story on the radio and decided they want to help.

These are the people I wish I could thank one by one, but I don't even know their names.



Looking at all my past Thanksgivings.  My favorite one is Thanksgiving 1993.  It was the last Thanksgiving with my dad.  He passed away the following May from lung cancer.  We always had Thanksgiving at home an then would drive to my grandparents houses.  That year we got up and drove to my grandma's (his mother) and had Thanksgiving with her, and then later went to have Thanksgiving with my other grandma.  Being 14 at that time, I didn't realize why they all of a sudden changed the way we did things, but now I am thankful they did.  Changing the way things were done that year is one of the reasons it sticks out so much in my brain.  I can remember so much about that day, where I can't any of the other Thanksgivings.

My least favorite Thanksgiving was the first Thanksgiving after we moved to Las Vegas.  I was 16 an was excited to help my mom make Thanksgiving for us and my uncle and his family.  That morning we woke up early to get the turkey in and found that it had gone bad.  We stressed out because in Illinois, the stores weren't open on Thanksgiving.  Thankfully in Vegas they were.  So we grabbed this nasty bird and went to get a new one.  The guy at the store told us that it had gone bad before it was ever frozen.  Thankfully he was able to save the day!

My 2nd least favorite Thanksgiving was 13 years ago.  After being induced, 48 hours of horrible labor, and an emergency csection Warrior was the Sunday before Thanksgiving.  You'd think that would make for a great Thanksgiving wouldn't you.  We were finally released from the hospital 8:30 Wednesday night.  Since I was only using Tylenol in the hospital to help with the pain, we decided not to fill the prescription for the pain killers.  BIG MISTAKE!!!!  Having to get up out of bed several times a night had me in so much pain I couldn't stand it.  We were invited to my step dad's brothers house for Thanksgiving that year.  I was in so much pain that my plans for that Thanksgiving were to stay home and eat a sandwich.

That was the year we found out that the grocery stores may be open, but the pharmacies weren't.  We finally found a pharmacy that was open so I could get my prescription filled.  The down side was it was right down the street from where we were supposed to go for Thanksgiving.  SO we ended up there for the day.  Even after the pain killers, I was in so much pain that all I could do was sit in a chair and try not to cry.

Happy Thanksgiving to everyone out there!!!!!

How I Get My Kids To Read

I've had a few people ask me how I get my kids to read.

When Warrior was in kindergarten I had to fight with him to read.  I always love to read, and loved reading even more to my kids when they were babies.  I had hoped that my reading to him every night would make him love to read.  Nope.  I constantly had to fight with him to read a book himself.  If I sat there with him he would read it as long as I took turns with him, but he wouldn't read one all by himself.

So I came up with Book Bucks.  They could then turn in this "money" for things they wanted or wanted to do.   Over the years as they've gotten into chapter books and then the big chapter books my prices have gone up.

When they were younger I printed up some slips of paper with numbers on them that I gave the so they could physically see them.  Now that they are older they have some old check book registers that they fill out. 


They used to bring me the book and tell me about it.  What they liked about it, what they didn't like about it.  Then I would hand over the money.

Now that they are older they each have a clipboard with a sheet hanging in our learning area.  On the paper they write the names of the books they've read, how many pages, a short summary, and one thing they liked or disliked about the book.  They know the summary must be different than the one on the back of the book or they won't receive their Book Bucks for that book.

Then every other Friday I will go through their lists and figure out how many Book Bucks they each got for that period.

Over the years I've been able to turn this into something more than just bribing them to read.  They've learned what inflation is.  They've also learned how to budget and save for what they really want.

For Sugar Pea her prices are
                           $0.50 - a picture book.
                           $2 - $5 for a chapter book depending on how many pages it has.

For Warrior -
                           $0.25 - for a picture book
                           $2 - $5 for a small chapter book
                           $5 - $10 for a larger chapter book

They can use the Book Bucks for extra TV time, or an extra half hour of video games.  They also have the option of using them for an extra family movie night or extra family game night.

They can also save up for big things.

$500 - an extra mom/dad and me day a month. 
$1000 - for a new video game/toys - but they have to pay for part of it with their allowance.
$5000 - we will take them an a friend to the local boardwalk for a day.

Before anyone says anything about the mom/dad an me day.  We have these a few times a month.  We will take the kids out for one on one time.  Sugar Pea and I will go for a trail hike or get mani/pedis.  Warrior and I have gone to the batting cages or mini golf.  Their dad takes them for hot chocolate at Starbucks, or for ice cream.  


Its time for the kids to talk to them about anything they want without having the sibling there with them.  When they buy an extra day they get to plan it.  They plan where we go, what we do, and what we talk about.  Its their day to be in charge.

The kids' school also helps with them wanting to read.  If they read a certain number of books a year they get a carnival at the end of the year.  This carnival includes several inflatable things like bounce houses or slides.  They also have game booths where they earn tickets and can use those tickets for raffles or to buy things like popcorn or caramel apples.  Even the middle school kids look forward to this.

I know some parents may not agree with my methods of getting my kids to read, but this works for us. 

Math Facts Practice

My 2 kids are complete opposites when it comes to school. Warrior has always found school very easy, but Sugar Pea has struggled from the beginning.

Warrior has always been at the head of the class. At our old school in LA, he was constantly in trouble because he would be the first one finished and would then look for ways to entertain himself. I went out and bought a bunch of workbooks for him to work on during these times, but his teacher would never give them to him. Always said she was to busy to hand them out to him. BUT she was never to busy to call me and complain that he was disrupting class again.

We moved just before he started 5th grade. This school has been awesome for him. Right away his 5th grade teacher realized that he needed more challenging work, and she would set him off to the side with something else to work on when he finished class work. Once he started 6th grade, he was put into 7th grade math. This year as an 8th grader, he's taking his math class at the high school.

This school has been really great for Sugar Pea too. She started this school in 1st grade. That's when we found out she has an auditory processing disorder. The easy way to explain it is its like dyslexia for the ears. Things she hears get jumbled up and makes it harder for her to understand verbal directions.

Had she been tested in Kindergarten, we would have had ahead start on dealing with it. She was in a speech class at the old school, and I even went and talked to the teacher once a month and sat in on a few classes. However I didn't find out until after we moved up here that he never really did anything with her. He used her as a body in his class, but never did any of the required testing. It was his last year before he retired and he just didn't care.

So in the last 3 years we've been working on her speech along with finding ways to make class time easier for her to understand. She's come a very very long way in such a short time. We still have a long way to go.

She also has a problem getting things from her head to the paper. She knows what she wants to say, but it doesn't always come out like that on paper. She is to the point that she knows this is happening and gets frustrated and shuts down.

So we've been trying to work on these things at home as well as school. Right now we are working on her being able to say her math facts in a pinch. Meaning less than 5 seconds. If she has enough time to think she knows them, but we need to get them down so she can just say them without having to think.

The Math Worksheet Site is one of my favorite websites for printing up worksheets.  We've been working on timed tests.  Each day Sugar Pea will take 2 timed tests.  One after school and one before bed.  Last night she decided she wanted to chart her progress so she can see how well she's doing.  Which I think is an excellent idea.

The timed test she takes right after school, then problems she misses or has to skip, she has to write 10 times each.  Like -
                           9 x 7 = 63  7 x 9 = 63
                           9 x 7 = 63  7 x 9 = 63
                           9 x 7 = 63  7 x 9 = 63
                           9 x 7 = 63  7 x 9 = 63
                           9 x 7 = 63  7 x 9 = 63

Some people think this is a little much, but we've learned that with certain things that she learns better if she can see it and write it.

She also likes playing multiplication bingo with her brother.  Especially when she wins.

Do you have any tips on learning math facts?  I'd love to hear them!

RIP Ashlynn Conner - Put an End to Bullying

I grew up not far from here.  Even though I didn't know this family, this has hit me harder than other stories like this.  Partly because of where it happened, and partly because this sweet little angel was only a year older than my daughter.

A few weeks ago, 10-year-old Ashlynn Conner told her mother she was being bullied at Ridge Farm Elementary School and in her neighborhood in Ridge Farm, Ill., WTSP reported.
Last week, Ashlynn's mother, denied her daughter's request to be home schooled. The following day, the 10-year-old's sister found her hanging in her closet by a scarf.
The devastated single mother told WCIA3 News she knew her daughter was being picked on, but not to that extent.
"They'd call her a slut," a tearful Conner told the station, "'Ashlynn's ugly.' 'She's fat.'"
While no one from the Georgetown Ridge Farm School District was available to speak with WCIA, they issued a short statement.

"The Board of Education is very saddened at the tragic loss of one of our children. Our hearts go out to her family in this time of loss."

Vermilion County Coroner Peggy Johnson said that they are still investigating into the cause of Ashlynn's death, The News-Gazette reported.
"There are all kinds of aspects of this death to look into," Johnson told The News-Gazette. "Bullying was brought up to us as a piece of the investigation, and we are still finding out information."

WCIA reported that the Conner family is still struggling to come to terms with the loss.
"I don't know what its gonna take to stop it," Conner told the station. "But no child should ever feel like they have to kill themselves to stop that kind of pain."
Last week, 18-year-old Ashley Billasano tweeted 144 times before taking her own life. Not one of her 500 followers reached out to help her.

People need to take a stand against bullying.  Parents need to step up and know what their kids are up to.  Parents of bullies need to step up and deal with what their child is doing and not dismiss it.

I've confronted the parents of the child bullying Sugar Pea several times and every time they put the blame on to Sugar Pea.  That she's to sensitive, or that she just needs to realize that is how Bully is and to get over it.

I even had a meeting with Bully's mother, the teacher, and principal last year and the mother said the same thing to them too.  Even with the strawberry incident (Sugar Pea's is very allergic to them and Bully tried to feed her one) the mother was and still is mad at me because Bully got in trouble again because of Sugar Pea.

These kids know that the schools can't do anything to them.  This is where the parents step in.  Stand up and be a parent.  If your child is being bullied, then make your voice heard.  If the teacher/principal at your school isn't doing anything about it, go higher up.  Don't stop until someone listens to you.

If you're the parent of a bully, don't pretend your sweet little innocent angel could never do anything like that.  Step up and talk to your child.  Make sure they know how you feel about bully and that you won't tolerate it.

If your child doesn't fall into those categories, talk to your kids.  Explain to them that they have the power to help the child being bullied.  That they can stand up for that child.  Either to the bully or they can let an adult know what's going on.

Take a Stand Against Bullying

Everyone has the right to feel safe in their school and community. If you see someone being bullied, you have the power to stop it.
By standing up for someone who is being bullied, you are not just helping someone else; you are also helping yourself. It is important to help others when you can.

What to Do When Someone is Being Bullied

• Take a stand and do not join in. Make it clear that you do not support what is going on.
• Do not watch someone being bullied. If you feel safe, tell the person to stop. If you do not feel safe saying something, walk away and get others to do the same. If you walk away and do not join in, you have taken their audience and power away.
• Support the person being bullied. Tell them that you are there to help. Offer to either go with them to report the bullying or report it for them.
• Talk to an adult you trust. Talking to someone could help you figure out the best ways to deal with the problem. Reach out to a parent, teacher or another adult that you trust to discuss the problem, especially if you feel like the person may be at risk of serious harm to themselves or others.

Work to Prevent Bullying

Bullying is less likely to occur when there are strong messages against it. Work with your school, community, or other groups to create and support these messages:

• Get involved with your school and community to find ways to prevent bullying.
• Create an assembly, performance, or event to spread the message.
• Be a leader [PDF 540 KB] and teach younger kids that bullying is not okay and that they can stop bullying before it begins.

Does your school have an anti bullying plan?  Suggest one.  Talk to your child's teacher and other parents in the school.

To many innocent kids aren't getting the help they need and are turning to the only thing they think will make the pain stop.

Wordless Wednesday - Lady Washington

Sugar Pea's class took a field trip to visit the tall ships. This boat is used for educational purposes, BUT it was also used in the first Pirates of the Caribbean movie. How cool is that!?


The Historical Seaport Changes Lives with Living History

 

To Read Lists

So much stress causes for many sleepless nights.  Since my husband has to sleep propped up on the couch (he can't breathe if he lays flat in bed) it leaves little for me to do during these nights.  So I find myself either reading or surfing the web.

Last night I decide to go through my To Read List and check off the ones I've already read.

That didn't take long so I decided to go through and add more to my list.

I love Shelfari because I can browse all sorts of books.  By series, themes, authors, and so many more.  Going through I found not only books I want to read, but books I read when I was younger.

I was so excited when I came across Anne of Green Gables.  Those were my favorite books when I was younger, I easily read each book in the series.  It was also one of my favorite tv shows.  I took those books with me where ever I went and would pull them out every chance I got.  I wish I still had my books so I could give them to Sugar Pea.  Every night we read together before she goes to sleep, and I would love to read these books with her.  She loves this mommy and her time so much she was telling me the other day that she wants more books for Christmas.

So I got to looking on Amazon and found the complete Anne of Green Gables boxed set.  I also found the Little House set, Junie B. Jones set 1-4, and Junie B. Jones set 5-8.  I can't wait until Christmas so we can start reading all of these together.

Shelfari also gave me a lot of ideas on books for Warrior.  He's been into Harry Potter for the last 3 years, but is finally getting tired of reading those same books and looking for new ones.  I bought him Percy Jackson 5 book set, Eragon series set,and The Golden Compass series.

Normally we get all our books at the library, but living in a small town they don't always have what we want which gets frustrating, fast.  Plus both of the kids have asked if they can start their own libraries in their rooms.

I figure if they are willingly asking for me to buy them more books, I'm not going to turn them down.

Cooking From Scratch - Mac and Cheese

After my husband has his transplant he can't eat any preprocessed foods.

We've been trying make more things from scratch now so it won't be such a shock after transplant. This also helps us control his sodium intake too.  Preprocessed foods are NOT low in sodium.  Some of them are more than half of his daily allowance.

The kids have been begging for mac and cheese, so I gave in (I am not a fan) and we made some homemade mac and cheese.  Let me tell you, this was really tasty.

Ingredients

• 8 ounces uncooked elbow macaroni
• 2 cups shredded sharp Cheddar cheese
• 1/2 cup grated Parmesan cheese
• 3 cups milk
• 1/4 cup butter
• 2 1/2 tablespoons all-purpose flour - we used
• 2 tablespoons butter
• 1/2 cup bread crumbs
• 1 pinch paprika

Directions

1. Cook macaroni according to the package directions. Drain.
2. In a saucepan, melt butter or margarine over medium heat. Stir in enough flour to make a roux. Add milk to roux slowly, stirring constantly. Stir in cheeses, and cook over low heat until cheese is melted and the sauce is a little thick. Put macaroni in large casserole dish, and pour sauce over macaroni. Stir well.
3. Melt butter or margarine in a skillet over medium heat. Add breadcrumbs and brown. Spread over the macaroni and cheese to cover. Sprinkle with a little paprika.
4. Bake at 350 degrees F (175 degrees C) for 30 minutes. Serve.

Trying to turn into a Germaphobe

Do you use a disinfectant cleaner?  If so which one?

I've never been one of those people that's been obsessed with germs.  I knew they were there, and always will be.  I didn't obsess with them because I knew I couldn't defeat them.

Now, at age 30something, I have to learn to be a germaphobe.  This isn't easy.  Especially this time of year.  Both kids have already been sick and we're only into the 2nd week of November.

After my husband's transplant he'll be on a ton of meds to help suppress his immune system.  This means all those seemingly harmless germs can be a huge problem for him.  And living with 2 little evil germ magnets doesn't make this easy.


We've been working on this over the last few months.  Trying to slowly work it into a habit instead of having to make it a drastic change all at once. We've bought face masks to wear if someone is sick, and for hubby to wear when he has to be around sick people.

We've also stocked up on a ton of hand sanitizer.  The kids' school is really big on sanitizer and having the kids use it all the time, so this hasn't been that much of a change in using it at home.  The kids just use it a lot more than they were before. 

The big problem we've run into is parents sending their kids to school sick.  In Warrior's class, a few weeks ago 2 kids were sent home in one day because they were running fevers.  They even told the teacher that they had the fevers before school, but their parents still made them come.  This has always irked me, but it does even more now.

Right now my husband getting sick means he's put as inactive on the transplant list.  That means if a heart becomes available for him, he will be over looked.  With his blood type that could mean waiting a lot longer for another one.  So we're trying to keep him as healthy as possible.

The biggest problem we have is what cleaner to use.  Bleach is out of the question.  Even diluted it affects my husband's breathing.

I bought a thing of Lysol but after reading the directions, you have to leave it on for 10 minutes.  I don't want to spend the whole day cleaning if I don't have to.

I also bought disinfecting spray, but that I can't use it while hubby's home.  We've also stocked up on wipes and have been using them, but I'd like to be able to save them for things that I can't spray and wipe down, like laptops.

So what do you use?

Wordless Wednesday #2 - Rock Climbing

Wo

Bullying Goe On

2 weeks ago we had issues with the bully in Sugar Pea's class.  She tried to feed Sugar Pea a strawberry knowing that she's very allergic to them.  Finding this out pissed me off because this happened twice last year.  So I posted something on Facebook. 

"When picking up the kids from school, I found out that the class bully in Sugar Pea's class tried to give her a strawberry and when Sugar Peas stood up to her and told her to leave her alone, she tried to shove it in her face.  Now the mom is pissed off at me because her daughter got in trouble again because of something she did to Sugar Pea."

That is what was posted.  Now the comments I got on the post were along the lines of calling the police if the school didn't do anything about it, and what kind of parent could be angry at us because of something her child did. 

So not much was done.  The bully got 1 day off school and a Friday detention.  That's it.

Anyway, today I had parent teacher confrences.  The first thing out of the teacher aide's mouth was that she had complaints that I had posted something on Facebook about something that had happened at school.


I told her and the teacher, that yes I posted something and no there were no names mentioned.  Then they made some comment about posting things on Facebook about the kids.  I rarely post about other people's kids on Facebook.  That I posted this time because I was angry because its gotten to this point and still nothing happens.  I told the teacher that I needed to vent before I made a scene at the school.  I then told them that I will admit I didn't handle it the best way, but I'm beyond frustrated because nothing is being done and now I have to fear for my child's safety because of this little monster.

The bully's mom doesn't do anything about it.  Her daughter can't possibly do something like that.  She's even told the teacher and the principal that she's tired of her daughter getting into trouble because of how sensitive me and Sugar Pea are.   I've talked to several parents and they've told me things that the bully has done to their daughters.  So its not just aimed at Sugar Pea this year.  She's branched out to bully as many as she can.

The teacher has done a good job of trying to be on top of it, but he can only do so much.  Especially when the kids aren't telling every time.  I know they've met with the parents a few different times about things. 

I feel things haven't gotten better, and are still getting worse.  In my honest opinion they need to stop giving her chances and make the parents find a new school.  Since its a charter school the school doesn't have to put up with this, and shouldn't.  They need to stand up to the parents and just tell them they need to go.

I don't want to have to find a new school because this one has been awesome as far as education and working with Sugar Pea and her learning disabilities.  I'm afraid that if things don't start getting better now, we will have to find a new one next year.

Whale Watching - No Whales

If you've watched the news this last week you've probably seen at least one story on the whales in Santa Cruz.  Or the video of the surfer that was almost swallowed up.

We only live about 20 miles from Santa Cruz so we decided to go to the wharf today to see if we could see any.

Nope.  Apparently they left  area Monday before this cold weather moved in.  Would have been nice had the local news said this.  But no, they were reporting even last night about all the whales in the area.

There were a lot of disappointed people there.  Even though we didn't see any whales we still had a lot of fun watching the seals and sea lions.




These kayakers were highly upset that they weren't told the whales were gone when they were renting the boats.

 

The kids loved watching this one.  She almost rolled off twice.

Its hard to see in this picture, but we were told this mama was nursing her pup.

 

 Whale watching boat

Lighthouse, surfers, and spectators.

 

And we saw lots of birds

Parade of Social Workers

We moved up here 3 years ago.  When we lived in Southern California my husband had a very stressful job.  He was driving 45 miles one way.  He was also working 12+ hours a day, 6 days a week.  He worked there for a year as a temp and then 5 years.  During that time, I think he had 2 days in a row off maybe 10 times. 

It wasn't just how much he worked, but how he was treated at work.  He was expected to do his job, plus the job of his supervisor.  When he complained, he was the one that ended up in trouble, and then even more work piled on him.  He had his vacation time canceled twice because his supervisor retaliated.

During the time he worked there he ended up in the hospital with Congestive Heart Failure.  Because he has a congenital heart defect we couldn't find a cardiologist that knew how to treat him.  His cardiologist was constantly sending him to UCLA, and UCLA was always telling us he wasn't sick enough to be there and to stick with his cardiologist. 

Anyway, during those 2 hospital stays his supervisor yelled at me when I called to explain that he was in the hospital and weren't sure how long he would be in.  Once he went back to work, he was in trouble because he missed work.  Literally nothing got done while he was gone.

Finally things hit a breaking point and we decided it was enough and he needed to look for a new job.  That's what led us up here. 

We assumed that was the reason for us moving up here.  It wasn't until a year later that we found out the real reason was so we could meet the awesome doctors at Stanford.  The doctors have gone above and beyond anything I could have ever asked for.  I knew we found ourselves some great doctors when one of them sat with me in a waiting room so I wouldn't have to be alone.

The only complaint I've had through all of this is our social worker.  We've been through 5 or 6 of them now.  The first one was in the process of helping us sign up for the NTAF and just quit without notice.  So we were given a temporary one.  She was awesome.  When we explained to her what we were waiting for, she had it all finished for us by the following day.  Then they gave us a 3rd social worker.  We met with her once and she seemed nice, but we weren't with her very long until they decided she had to many people and passed us on to a 4th.  We talked with her on the phone but never met with her in person.  Then we were passed on yet again.  We've been with this one for about 8 months now, BUT she just had a baby, so while she's on maternity leave we have another temporary one.

I'm still not exactly sure what the social worker actually does.  Ours hasn't done much other than remind us that we need to raise a lot of money.  Because, I'm not stressed out enough as is, she needs to constantly remind me about the financial part of all this.

Another reason I'll be glad when our lives can go back to normal.  Or somewhat normal.

Why We Fundraise

I'm sure you've noticed the fundraising widget on my sidebar.  Fundraising has become a huge part of our lives the last 18 months.  Even more since I haven't been able to find a job.

I've been a mom for the last 9 years, so I don't have any recent experience in anything.  Plus everyone in the area knows about my husband, and most managers don't want to hire someone that will be gone for 3 months at a moments notice.  Plus jobs in this area are scare to begin with.  Sometimes I feel like a bad mom and wife because I'm not working, but its definitely not for lack of trying.

Up until then I lived in the fantasy that because we have health insurance everything will be fine.  I mean up until then we never had a problem with them.  We paid our deductibles and copays on medicines, and never gave anything a 2nd thought.

Then the list, the LONG list, of things they don't cover, or barely cover, started coming in.

•  During transplant lodging.  Depending on traffic, we live 90 minutes to 2 1/2 hours from the hospital.  Once we get that call, I will be staying near the hospital.  Hotels in that area are $55 + a night.  If all goes well he'll be in the hospital for about 2 weeks before he's discharged.  We know there are some hotels in the area that will help work with us on the prices, but I'd rather plan for the higher prices just to be safe.
• After transplant lodging.  Because we live so far away from the hospital, my husband and I have to live near the hospital after transplant.  This can range anywhere from $20 - $100 a night at the hospital apartments.  We've planned on the $100 a night as a precaution.  I'd rather plan for the worst and hope for the best.  Recently we also found out that we need $300 just to move in.  Our social worker never told us this.  So I'm also wondering what else she hasn't told us.
• Food.  The one thing we have found the last 2 years is there isn't much to eat near the hospital.  You have to drive a good distance to get to get to the semi decent priced restaurants or fast food.  So while he's in the hospital I'll be stuck eating cafeteria food while I'm at the hospital.  I plan on trying to get a hotel room with at least a fridge so I can stock up on food the grocery store.  Plus all the groceries we will need while we live at the hospital apartment afterwards.
• Gas.  Gas for me to get to and from the hospital and hotel while he's in the hospital, and then to get around town after he's released.  During those 3 months we will be making trips back to the clinic several times a week.
• Monthly bills.  Unfortunately during this time, life goes on.  That includes our rent and monthly utilities.  As much as life would be 10 times easier if I didn't have to worry about these for those 3 months, that's not going to happen.  My mother in law is going to come up and stay with our kids, so we can't shut off or suspend the utilities.
• Rejection meds.  After the transplant he will be on a ton of meds to keep his body from rejecting his new heart.  For just 2 of the medicines, our copay is $6000.  Only 2.  We also found out that our insurance only covers $500 a year on name brand medicines.  Thankfully a lot of the meds come in generic form too, but not all.  Then there are some that are over the counter meds, which aren't covered by insurance. 
• Anything else.  I know there's more that I haven't even thought of yet that will eventually slip themselves into my mind to give me yet another thing to stress out about.

That list isn't including the bills we have piled up that our insurance company refuses to pay.  Those come out to $136,000 so far and rising.

When we first sat down with the transplant social worker, we were determined to do this ourselves.  We weren't about to admit to other people that we couldn't handle it financially.

It wasn't until our next sit down with our transplant social worker that we realized we needed to swallow our pride and ask for help.  Being told about the $6000 a month copay for just 2 medicines was a huge wake up call.

Swallowing our pride and admitting that we needed to reach out to people was the hardest thing we had to do.  We had only lived here for a little over a year and didn't know many people in town.  We weren't sure, and were kind of scared, how people would react.  Finally we just took the plunge and contacted the local newspaper.  They ran a story about him, and about our rising medical bills.

After that first article ran, Warrior's 7th grade class decided they wanted to do something to help us.  They designed a quilt that they raffled off.  Each student, plus the Sugar Pea, designed their own little square.  Then the teacher and a friend of hers sewed it together.  They raised almost $1500 with just that one raffle.  We've also had Dining for Dollars nights at different restaurants.

We're still looking for some big fundraisers, and finding people to help us.  When we first started we had a friend tell us that she would be the coordinator so we didn't have to stress about anything.  Only she hasn't helped us with anything.  Always has an excuse why she can't or won't contact local businesses.  So its all fallen on our shoulders, so its been slow.  Between doctors appointments, hospital stays, and trying to give the kids a somewhat normal childhood. 

Unfortunately our need for fundraising isn't going to come to an end any time soon.

Kids Need to be Kids

Isn't she pretty?  Sugar Pea went as Draculaura from Monster High for Halloween.  We had an agreement that I would let her wear a little makeup for Halloween.  After I was done I was scared at how much older she looked.  I told her she isn't wearing makeup for a very very long time.

After last night she was fine with it.  She says makeup takes to much work to put on and take off.  We'll see if she still feels the same way in a few years.

I feel kids need to stay little as long as they can, they grow up fast enough as is.

I just wish kid fashion felt the same way.

I hate taking Sugar Pea shopping for clothes.  For one school dress code says that skirts/shorts have to be fingertip length.  She has very long arms and her fingertips are at her knees.  So all the cute skirts/shorts she finds are to short.  Some are way to short anyway.  So we then have to find leggings that look good to wear under them.  Most of the time she gets so frustrated and gives up.  I feel bad for her.

She doesn't want shirts with big ugly pictures on them, and definitely doesn't want a giant picture of Hannah Montana on her clothes.  She also doesn't want to wear t-shirts and jeans all the time.  So we have a hard time finding clothes for her that are cute, stylish, but also make her look like she's only 9.

Then a month or so ago we had to go shopping for a bra.  Poor Sugar Pea.  I can remember being so embarrassed when I had to go shopping for my first bra, and I had hoped to make it a little better for her.  We went shopping and pedicures first.  Kind of like a mommy and me day out.

I'm shopping for my 9 year old, so I figured the hardest part we were going to have was her deciding on what she liked.  Oh no.  Our hardest part was finding bras that were fit for a 9 year old.  Who in their right mind would by a padded bra for a little girl?  Or a black bra?  Seriously?!  I couldn't believe the options we had.   It took us 3 stores before we found a selection fit for little girls.  After the 2nd store she was more than ready to just use duct tape and pretend she didn't need one.

Hopefully this new round of clothes in stores makes Christmas shopping a little less stressful.