How do I feel about the kids starting school tomorrow..........

I am not so sure about it.

What a GREAT way.....

to end the weekend!!!!

We woke up to a wonderful cloudy morning!!!

{It could not have been better Bubba weather.}

We got there as soon as Disney opened.

They only bummer......

Regan didn't want to go with us....

BUT this cute little girl named Alice came in her place. :)

And she had a tea party with a white rabbit.

Only one more day of summer left before school starts.

Ready or not here it comes.

I love you weekend.......

My wonderful Hubs works VERY hard!!! He has a CRAZY work schedule and the kids can go days with out seeing him. I am so grateful to be married to such an amazing man that works so hard for our family. {LOVE YOU!!!} So, we were all excited that Daddy had a three day weekend this weekend!!!! Wahooo!!!!! It could not have come at a better time, this past week did me in! We did lots of fun things BUT there were also some very hard days. Bubba had doctors apts. and we needed to get all of the paper work for school taken care of.... seizure plan, feeding plan, allergy plan, medications, etc... I can not tell you in words how grateful I have been to have him home to play with us.

Saturday we decided to take one last bus ride before school starts! 

He just sat there waiting for the bus to come. 

He was very tired from the hard days he had just had BUT trust me ...

he was excited to be on the bus! :)

We took our trusty bus guide with us, Great Grandma Jo! 

We took the bus to the mall where the kids went on the train.

Regan is the best sister ever!!!

She is so OVER the train but will ride it with her

 Bubba becuase he can not ride it by himself.

After church today we decided to go and play with the kids and Stanley. 

They both enjoyed flying on their wheels! 

Shoot, once Bubba got going... he was OFF!!! 

Daddy and Regan played a great game of hop scotch. 

Stanley had a play date with Nana and Pa Pa's dog Emma.

They LOVE each other!!!! 

It has been a wonderful weekend and the BEST part....

It's not over yet!!!!!

Guess where we will be tomorrow morning! :)

{The hardest part}

I have been asked many times “What is the hardest part of being Bubba’s Mommy?” Tonight I have the answer. On one of our trips back east to the NIH we found out that our sweet Bubba has a very high tolerance for pain. They did a nerve conduction study on him. The nurse performing the test would occasionally say things like “Mom, this should be bothering him.” Then as she increased the intensity she said “ THIS should really bother him.” He didn’t flinch, nope it didn’t bother him one bit. I wasn’t surprised by the results from the test. One summer Bubba came home from school with a small hair line fracture on his foot. He did not cry or complain. The only reason I even knew there was a problem with it was because when I went to take his shoe off, his foot was so swollen I had to cut the shoe off. I called the school and the teacher felt so bad and had no idea how it happened or that he was even hurt. He is one tough boy. I think this is a special gift from God that he has been blessed with. I watch what his tiny body has to endure on a daily basis and it would bring any grown man to tears. I am constantly amazed by his cheerful attitude and smile when I know that he is in pain.  

So, this brings me to the hardest part…….

Nights like tonight when I have to hold my boy as he screams in pain, wipe off his sweet little face because the pain causes him to vomit, give him an injection of valium, watch tears fall down his face while he is asleep. Eleven years I have had to cuddle, fight, and do anything I can to help him on these pain filled nights. The hardest part is that I would do anything to make it go away, to stop the pain, but I can’t.

I am ok with the fact that I will not hear “I love you” come out of his sweet mouth here on earth. I don’t mind changing diapers or having to feed him through a tube in his stomach. I am fine with lifting his little body in and out of his bed. Lifting his chair in and out of my van has become just as much a part of my life as breathing. I don’t think that these things are hard….. these things are normal, our normal. Nope, I will happily do these things for my Bubba with a smile on my face because these things aren’t hard. The pain…..that is what is hard. I don’t think I will ever get used to it. I doubt that I will ever be able to hold back the tears on a night like tonight.   

It is hard BUT tonight I take great comfort from THIS {Come what may, and love it.} talk given by Elder Joseph B. Wirthlin. "If we approach adversities wisely, our hardest times can be times of greatest growth, which in turn can lead toward times of greatest happiness."  I do wish that I could change these hard nights filled with pain but since I can not change the pain, I can change what a take away from it. Tonight as I look at my sweet Bubba asleep in his bed I am HAPPY that he is finally getting some much needed relief.  I am also HAPPY that it is the HARD moments like this that make me so much more grateful for HAPPY moments like this morning.   http://youtu.be/Rqg4eovjpyc

going out on a limb........

My sweet little Regan is...

well, there's no nice way to say it...

She is a BIG ol' chicken.

She doesn't like new things, roller coasters, or being scared.

So, that is why I could not have been more proud of her today.

We took Great Grandma Jo to the L.A. Science

Center today for her very first time.

While we were there Regan decided to do something new....

she decided to be brave.

She decided to go out on a limb. :)

I could tell that she was nervous as the man strapped her in to the bike....

BUT she had made up her mind to be brave!!! 

Why would she need to be brave to go on a bike you ask??

This bike was on a rope VERY high up. 

She did such a GREAT job!!! 

Shoot, when the guy asked her if she wanted to do it again..... 

She said "SURE!" and headed back out! 

I am so proud of my brave little girl!

We tried so hard to get Great Grandma Jo to do it as well.....

Maybe next time. :)



Mark it off THE LIST.........

There have so many other FUN things marked off of our

summer list that I haven't had a chance to blog about.

Mommy/ Bubba day (while Regan was in San Diego) at Disneyland. 

I would go on rollercoasters with this boy every day of the week if I could.

He LOVES them!!!! 

On one of Daddy's rare days off we went bowling with him!!! 

We have been to see good ol' Uncle Bill several times and well....

We LOVE our Uncle Bill!!!!!

Daddy and Regan had a Daddy/ Daughter Date night to an Angel game.

She has been talking about this one all summer!!!! 

We even managed to get Great Grandma Jo in on our bowling fun!

Seriously, I think we have a bowling obsession.

It is our safe go to place when it is hot and Bubba LOVES to bowl!! 

Great Grandma Jo even wanted to give it a try. 

We have had such a fun summer and only have one week left.

Let the count down begin!!! {boo}

Still on the list to do:

Mommy Regan mani pedis

natural history museum

beach

sleep over

disney land

go to the zoo

and yup... get in one more round of bowling.

wish me luck this week!

and the count down to the end of summer begins...........

I don't know what these three will do once school starts.
They have spent at least two to three days a week together.
It has been wonderful!!!!
When school starts play dates will be few and far
between with everyones crazy schedules.
It doesn't help that they each go to a different schools.
It has been so fun to see how much each of  these
sweet girls have grown over the summer.

At the begining of the summer two of these girls could not swim.

Two of these sweet girls would not even put their face in

 the water, mine being the biggest scaredy cat.

This week we celebrated the girls and their awesome new skills!!!

I can't even  begin to tell you how grateful I am for such

 an amazing friend that taught my daughter how to swim.

I mean really, she is awesome!!!!!!!

We all gathered by the pool to cheer for the girls.

Great Grandma Jo had to judge the cannon ball contest, they all won!

Bubba, Daddy, Nana, Great Grandma Jo, Me, and even Stanley came to watch the show.

I have some great video of their water ballet. :)

I don't think I am ready for summer to end.