Monday, June 25, 2012

I have a good ecxuse......

It's summer time baby!

We have been busy playing....

and enjoying every good day we have been given.

We went bowling with friends.......

and ran into more friends.......
One of Bubba's friends from middle school.
I know I have said it before but I can't say it enough....
My heart just leaps to know that Bubba has REAL friends that love him.
I was so worried that he wouldn't have buddies but he does......

Lots of them......... 
I can't tell you how much I love this boy!
He is the sweetest friend to Bubba.
He doesn't see his wheel chair.... he sees a friend!!!
{sorry.... let me wipe away my tears.}

We also met up with a friend at Disneyland for her birthday.............

 While we were there we ran into more friends!!!...

So, we invited them to join in on the fun! ;)

 Brenda had to hold Regan's hand the entire time we were there. ;-)

Bubba was getting tired and wasn't feeling well.
His sweet friend was so worried about him.
{yes, more tears to wip away.}

Then we had some bad days.... BOO!

Fast forward to another good day!

We got to go BACK to Disney with Hubs!!!

we are enjoying every good minte of every good day!

Here's to a summer that just a couple of months ago I didn't think was possible!!!

Here's to better days!!

Monday, June 18, 2012

{beautiful pain}

Last week was another week of treatment.

It started out good....
That sweet smile of his was present, as if saying BRING IT ON!
They have been having issues acsessing his main line the last couple of times.

So, this time they used a big gauge needle to get his line started with his port.

Bubba was a champ.

Before we knew it he was hooked up and treatment started.
These days are always LONG days at the hospital.
I do what ever I can to make the days go by faster.

Child life is always so sweet and she LOVES that Bubba.
It was a hard day for Bubba...

with LOTS of hand holding.
{give your healthy kids a hug}
That night Bubba woke up screaming....

Oh the side effects are horrible.

The pain.. the vomitting..... it just isn't right.

It's brutal on his little body.

It was Regan's last day of school and we could not be there, the pain was to much even with his heavy cocktail of pain meds.
{Luckily a friend rushed in and saved the day by picking her up.}

Regan was sad.... Bubba was in pain.... and my Momma heart broke.

The next day Bubba woke up with a SMILE on his face.

He was feeling better and loving life again.

I knew that we needed to celebrate... Bubba's freedom from pain and the first day of summer.

So, the kids and I decided to meet up with some friends visiting from New Jersey and head to ... where else...

Dinsey baby!
It was the opening day for Cars Land and Bubba was treated like royalty.

They are always very kind to us him but this time ... well they went above and beyond.

It was as if they knew what a horrible day he had the day before.

It was as if they knew that he NEEDED this dose of magical medicine.

The suites escorted us the front of EVERY line.

As a Make A Wish kid Bubba doesn't have to wait in lines on a normal basis but we don't get a personal escort. ;)

He was given a Disney balloon....

which I happily gave to our visiting friends after ten minutes of it smacking me in my face on the back of his chair. ;-)

 Billy was smitten with Regan and had to ride EVERY ride with her.

All of the new rides were awesome!

Bubba's favorite ride was the car racing one.....
 even though there was a four hour wait for this ride we went on it not once...

not twice BUT THREE times!!

It was by far everyone's favorite ride!

At the end of our fun time at Disney my back ached from lifting my sweet little boy on and off all of the rides, from carrying his helpless little body and backpack with his lines attached to his wheel chair.

Later that I night I got a little teary talking to Hubs about our day.

I told him how bad my back hurt but it was a beautiful pain.

A pain that didn't compare to the pain that Bubba had faced the day before.

A pain that only a happy Mommy could bare.

It was a pain that brought a smile back to Bubba's sweet face.

Oh, I love a beautiful pain!

Saturday, June 16, 2012


This year my sweet BIG BAD DAD gave us a scare and for a moment I thought I had lost him. I can’t even explain in words how lost I felt at the thought of not having him in my life. So, with this is mind this Father’s Day takes on an entirely new and special meaning of celebrating how very much I love my sweet BIG BAD DAD. I think back to our rides in his hot rods, rolling the windows down and driving FAST… than being warned not to tell Mommy. Wink! Some of my fondest memories were up high in the sky. My Dad owned a little Cessna airplane and we would go out on Saturdays and fly high. It seemed like a game to see if he could make me lose my stomach by dropping down and quickly pulling up. I will never forget the day that I finally got to fly the plane myself!! Wow, did I feel so grown up. Looking back I have no doubt that my dad was steering the plane with his knee. Wink!  After graduating High School I was off to Texas to live with my oldest sister and get ready for school. My parents split up and before I even realized what I said I was asking my Dad to come and pick me up so that I could be there with him. The thought of him all alone did me in. The LONG drive from Texas back to California is one of my all-time favorite memories with him. We talked and talked… laughed… and drove in my tiny little Aspire. We drove straight through and by the end of the trip we were very tired and getting very silly. We rolled down the windows in hopes that the cold air would help the drinks to keep us awake. Magic Carpet ride by Steppenwolf came on the radio and we turned it up as loud as we could and just started screaming the lyrics on the empty highway. Now, anytime I hear that song, which is on all of my play lists, I think of my Dad. This one is a funny one…. I was planning on moving back to Texas after my Dad relocated there. I met Hubs and quickly fell in love. I called my Dad and told him that I was going to stay put in California. Of course he asked… “Is it a guy?!?!” Well, the very next weekend he was in the plane and headed here to meet “the guy.” I love that he has always been protective of me. ;) There are so many stories and happy memories that I have with my BIG BAD DAD I could go on forever. I will end with one last story…. When Bubba was born he came eight weeks early and it was a very scary time for me. My Dad called my mother in law and asked her if I needed him. The next day he was on a plane headed to California to be by my side.  I was so grateful to have him there with me in such a scary time. Even now, on some of my hardest days I know that all I need to do is pick up the phone and call and he will make me feel better. I am so grateful to have such a wonderful, loving father in my life! I love you Dad.. Why?!?!... because you are BIG and your BAD and your my BIG BAD DAD!!!

Happy Father's Day to the BEST ...
BIG BAD DAD ever!!!

Just in case you do....

Just in case you ever stare and you self and hate your skin....



Next time you do.... think about Bubba.....

This is a part of his life that I don't think I have ever blogged about.

Bubba has painful eczema....

common enough.. right?

BUT did you know that Bubba also suffers from Ichthyosis?

Did you know that Bubba's sweet little body is covered in scales?

Did you know that this will keep him up at night?

Did you know that kids stare when they notice it?

Did you know that because of this Bubba looked like he had been burned in a fire when he was born?

Did you know that Bubba's little body can't be exposed to UV rays for long?

Did you know it will cause very painful sores all over his body if he is?
{those pictures are just to much to put on here. }

Did you know that becuase of this Bubba's hair falls out?

So next time you wake up to a bad hair day and you get mad....

be grateful you have hair to go crazy.

When you wake up and don't like your skin.....

Just think of Bubba.

Next time you bask in the sun and enjoy it's rays....

think of Bubba who doesn't get that joy.

So, just in case you do give yourself a hard time......


Friday, June 15, 2012

Sorry Dad....

My  Dad  called me the other day.... "Is everything OK?"....

"I am worried you haven't blogged or done much on FB.. is Bubba ok?"

I am sorry Dad.

I didn't mean to worry you.

I have been busy with end of the school year fun things for the kids....

the typical medical daily stuff...

every crazy day stuff.........

and finishing up a good book.

So, here is a bit of what we have been up to....

I got to go to Regan's end of the year patriotic performance....

and I got to take a cute date......
Yup! Bubba felt good enough to go with me!!!
The kids did such a good job and were so cute!!! 
 Poppie made Regan this super cute dress before she had surgery.
I sure love my Momma!

 Nana came to show her support....
and great grandma jo!
After the show some of us took our kids out to lunch.
Great Grandma Jo, Bubba, and I went with Regan.
I LOVED seeing her with the girls... just being girls. ;)

Bubba was invited to go to his school's annual track day.

He was having a hard morning and after a dose of vicadin we headed off to the school.

When we arried everyone was sitting out on the grass enjoying lunch.

One of the teachers spotted us and YELLED.... COLLIN IS HERE... COLLIN IS HERE...
everyone started cheering and clapping.

They were all yelling his name and it took everything in me to not break down.

It was a true Hero's welcome. ;)
This picture makes me tear up every time.
You can see the pain in Bubba's eyes and his friend kept
 kissing his hand and was so worried about him.
Everyone came and loved on Bubba. ;) 

 The boys!
Bubba looks so tiny even though he is starting to put on weight.
Bubba and his awesome teacher!
I LOVE his school!!!
We are hoping that Bubba will be strong and healthy enough to start back in the fall.
{fingers crossed.}

I am so grateful for both of my children's schools and the wonderful teachers that they had this year.

We will miss them over the summer.

BUT for now.....

Schools out for tha' summa!
{insert beastie boy anthom}