Presley Fam

{miracle}

2012-02-12T16:24:00.000-08:00

"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle." (Albert Einstein)

I CHOOSE the latter. :)

I am grateful for the miracle of these sweet, tender moments today.

Grateful for the miracles that I find in their sweet smiles.

{even if Regan's mouth is blue from a fun dip! ;) }

Grateful for the miracle that is Sunday and the chance to fill up

my spiritual "bucket" for the week at church. :)

What simple miracles are you grateful for today?

watch me {juggle}

2012-02-11T16:10:00.000-08:00

Have you ever looked at a woman and wondered how in the world she did it?? ….How she was able to have an immaculate home, perfect hair, train for a marathon, and manage to make the cutest handouts for her child’s class. Seriously, you know that you have met someone out there like this or maybe stumbled upon a blog like this. I sit in awe of these women BUT then I wonder how much of this is “real”… where is the balance?? At what cost does this perfect persona come with? Lately, BALANCE has been on my mind a lot. I would love to have things in my home perfectly clean, organized, and maintained but then it wouldn’t feel lived in, would it? We are in the middle of re-doing our living room and it feels like total chaos. {I will be so happy when it is all done} I would LOVE to have my hair look descent let alone perfect but then that would mean that I would have to take the time in the shower to wash my hair and some days that is a luxury. Let’s face it, when Bubba isn’t doing well I feel lucky just to get the important parts washed… forget the hair. Wink! I would LOVE to work out but my body is not my friend right now. Bubba is waking up in pain so much at night and I am lucky if I get 4 hours of sleep. Shoot, I am writing this post on one hour of sleep… so forgive me if it comes out chaotic. Wink! So, forget working out… I am happy if I can simply make it to the end of the day. Ok, I will confess that I am one of those moms that will stay up late the night before trying to make a cute hand out BUT lately I have to stop and ask myself before taking on one of these tasks… “Is it worth it?” Trying to find the balance of what I think I should be and what I can be is hard. Trying to find the balance amidst the constant chaos that is our lives is difficult. Shoot the hardest balancing act for me comes with being what Bubba NEEDS me to be for him and still being what Regan wants me to be for her. So much of my time lately is going to caring for Bubba’s physical needs.

It is a HARD balancing act.

Yes, I said it… motherhood is HARD.

I LOVE it, I love it more than I could have ever imagined.

Motherhood is one of the hardest yet most rewarding jobs out there.

Regan adores her sweet brother and I don’t want that to ever change. I don’t want her to ever hate the fact that plans were canceled because of him. So, this is where my new and improved balancing act begins. The secret…. I am learning to except help. I know!!! … Crazy right!?!? I am one of those stubborn women that feel like I SHOULD be able to do it all but the reality is… life is HARD, life with Bubba is VERY hard. So, when wonderful friends want to help …. I need to accept their help. Easier said than done BUT I am trying to get better at it.

Regan was very upset when we had to cancel our annual Christmas party because Bubba was sick. The other day she told me how much she wanted to have her Valentine’s party but was afraid that it would not happen because Bubba was sick AGAIN. So, I made the decision to put my new balancing act to the test. Luckily, Regan insisted on buying the crafts and activities when they came out in the stores {back in Dec.} so that was already taken care of. When my sweet friend offered to arrange the food I said yes! What … I know… I accepted help! Woot woot for the new balancing act. I had face masks ready for anyone that might have come with a runny nose, cleaned up as best as I could, and settled on a less than perfect party because that was I all that I could muster up. You know, the funny thing is… my less than perfect party was perfect in Regan’s eyes. She simply loved having her friends over and having a bit of an “all about you” moment. I am trying to get better about finding balance in my new “normal”. I am so grateful to have such a wonderful support team that is willing to help me juggle when things get chaotic. I feel so blessed with my crazy, messy, tired, unorganized balanced life. : -)

Some of our friends! :)

LOTS of cuddles :)

Making Valentines.

Bubba did manage to give up some smiles.

It was so sweet to watch him and baby leo together.

They LOVE each other. :)

Then it was time to decorate cookies.

I think there was more eating than decorating.

More of the balancing act :)

giving this mama's back and arms some relief.

time to hand out Valentines.

I am truly grateful to have such such a wonderful group of friends to help balance out the chaos that is life! Love you gals!!!!

{Today}

2012-02-08T22:05:00.000-08:00

I find myself being asked this question alot lately....

"How is Bubba doing??"

Well, the answer to that question depends on the day, the hour, shoot the minute at times.

This past couple of weeks I have had a mantra ....

Just make it through TODAY.

"The BEST thing about the future is that it comes ONE day at a TIME." Abraham Lincoln

So, TODAY when I saw this......

I knew it was going to be a good DAY!!

I grabbed my cell phone and started taking pictures and sending them out to the fam.

"It is a GOOD day Baby!!"

I kept taking pictures and sending them out.....

WAHOOO it's a good DAY!!

I can't even tell you how excited this tired Mama was to see that great BIG smile!

He only slept in until 10:30 today....

He woke up with enegry....

He was able to sit up on his own....

He was HAPPY....

It was going to be a good day!!!

And then if that isn't good enough..........

Bubba was still feeling good when his BIG lil' sis got home from school.

She was so excited to see Bubba happy!

Then Bubba found Daddy's X box remote and turned it on.

He thought he was pretty funny.....

Yeah, so did we :)

Even Stanley loved having Bubba up and happy.

My heart SMILED a ton today.

I am not sure what tomorrow will be like

BUT

I know that {TODAY} was awesome!!

Just another day in the life.........

2012-02-07T22:24:00.000-08:00

of my little Hero. :)

"Do not be afraid of tomorrow; for God is already there." ~Author Unknown

So, Dr. your saying his heart is strong......

2012-02-03T10:42:00.000-08:00

Hmmmm….. Where do I start?

Well, you know that as mom’s we pretty much know everything.. Right??

There must have been a manual given to me at some point but I guess I have lost it.

So, I have to rely on my motherly instinct and prayer.

I knew that something was wrong with Bubba…. Like really wrong.

He’s just not been himself; it is heart breaking to see.

He has been spending too many days like this…..

{side note: to any of you that said not to get a dog... that it would be to much work on top of caring for Bubba. You were so wrong.:) This sweet dog has been AMAZING!! He is so in tune with Bubba and is right by his side when he is sick. He is also a HUGE comfort to Regan. Serisoulsy, I can't believe what a blessing a little dog has been to our family.}

We haven’t seen this nearly enough………

Regan notices it as well.

The other day Bubba was happy and smiling and Regan said

“Oh, there’s that old Bubba I love and miss!”

So, I used my mother’s instinct and started taking Bubba into see his doctors.

It was obvious right away by the amount of tests that were ordered, that they were worried just as I was.

We were told some scary things at first....

BUT

“we must wait and get the test results back first” the doctor said.

So, that’s just what we have been doing… waiting.

Luckily, I am married to a Knight in Shining armor… remember?

He dropped everything to be by my side for these important appointments.

I love that sweet Knight of mine!

Ok, so now you are asking…. What is going on!?!?!?

Well, there are several things going on with our sweet little Bubba right now.

1^st he off he is having tummy issues and will be needing surgery soon to help with the constant vomiting.

2^nd Bubba’s levels are off, way off, so he will soon be getting either a broviac main line or a portacath and starting infusion treatments for Bubba every 3 weeks. {After insurance approves it all of course}

3rd Bubba's sweet lungs are having a hard time. Do you want the good news or the bad news first??

Ok, so the good news.... Bubba does NOT have Pulmonary hypertension!!! His heart is doing good!!! Wahoo to that! We have always known that his heart is the biggest and best part of him! :)

So, now the bad... well Bubba is in respiratory distress and will soon be needing the help of a trachea and the help from a ventilator to help him.

We first have to get our Bubba healthy before doing the trachea.

So, he is on a lot of medications and they are running lots of tests so that they can make the best decisions when it comes to our special little hero.

This has been HARD.

Nope, no other way to put it.

There have been lots of tears shed, prayers said, and kisses stolen.

I am nervous as to what our new "normal" will be.

BUT

I will figure it out quickly and take care of my sweet baby how ever I need to.

I will continue to love on Regan and answer her questions.

I know that she is worried.

It breaks my heart.

We are hoping that OUR HAPPY and AWAKE Bubba will return after we start this process.

Please keep Bubba in your prayers. Please keep Regan in your prayers.

Thank you all so much for your love and support.

I am blessed with an amazing support system of friends and family.

Yesterday was hard but then I looked around and was reminded how truly blessed I am.....

two sweet friends that rushed to my rescue with out me asking....

my wonderful best friend by my side....

my oh so sweet mother in law that scooped Regan up from school and took care of her for me...

my wonderful mother that is willing to jump on a plane at a moments notice.....

my sweet sisters that know just what to say.....

my loving Heavenly Father that loves and supports me in my hardest moments.

We have no right to ask when sorrow comes, "Why did this happen to me?" unless we ask the same question for every moment of happiness that comes our way. ~Author Unknown

Thank you for your love and support web friends. :)..... and keep those prayers coming.

Ability Expo and the winner

2012-02-01T21:43:00.000-08:00

The Aquarium of the Pacific hosted their annual Human Abilities Expo this past weekend. Luckily Bubba was feeling up to it and we were able to go! :) It is always so much fun to go and meet new friends, check out new vendors, and watch all of the performances.

Regan brought her new buddy, sussie the dog with us.

(I can't wait to write a post about that one.)

This amazing artist has been there every year that we have gone.

He is very talented!!! Regan loved talking art with him.

We did go and see some of the fish while we were there.

Regan fed the sting rays.

Bubba made some a new friend.....

and wanted to bring him home with us. :)

It is always fun to run into friends while we are at these types of events.

I love that wheel chairs are normal and people are so kind and helpful.

Bubba had fun testing out a sports chair.

Look at the men's faces behind him.

They loved watching him test it out. :)

Regan and her pal Sussie.

We have got to get Bubba one of these pin ball machines!!!!

He LOVED it!!!

We made a very sweet new friend.

This pin ball machine belonged to her daughter.

Her beautiful daughter is now and angle and her mother is one

here on earth bringing joy and awarness to those with disabilities.

Bubba has had a VERY hard day today.

I LOVE looking as these pictures, a simple reminder that not every day is hard.

Last but not least the winner of the free digital copy of The Sandbucket is.....

Deb Cox. :)

Photo Challenge | Oh So Silly!

2012-01-30T20:10:00.000-08:00

Over at

the challenge this week is Oh So Silly!

I selected this photo of Regan pretending to be her Daddy!

Oh, I LOVE my Silly little girl! She makes my heart smile. :)

Head on over to I Heart Faces to see the other Silly photographs.

Only in our home.....

2012-01-29T15:24:00.000-08:00

are Sunday afternoons spent

making Wheel Chair trains. :)

So much to tell y'all! {and a giveaway!!}

2012-01-28T20:51:00.000-08:00

There has been so much going on with our sweet Bubba that I have gotten behind on my updates.

1st thing I wanted to make sure I shared with you... it's pretty exciting y'all! Over at I Hear Faces they announced the top ten most memorable photos of 2011. Guess who was picked for one of those photos! It was this picture that Hubs snapped of me cuddling Bubba after one of his surgeries. So, technically I did not take the picture, all though I did edit it. So, I will give HUBS a shout out for this one! He is so proud of his "Major award"! Can I just tell you that I am tempted to go and find a leg lamp to bring home to him. He won't let me forget about his "MAJOR AWARD". ;-)

2nd There is an amazing new magazine coming out soon, The Sandbucket. They were holding a photography contest focused on talent. All of the photographs that were entered were AMAZING!! So, when I found out that our photograph won I was pretty excited! The e-mail letting me know that our photography had one could not have come on a better day.... Bubba was sick and we had been in the doctors most of that day. Bubba had some HUGE supporters on FB. :)This is the image that I entered and what I wrote with it.

When I started going through my photographs I naturally went to the ones of my daughter dancing first. That would be the obvious choice, right? As I sat here and gave it more thought I decided to go a different way with my entry. I have a feeling that most entries will be of obvious, beautiful, and even difficult talents, well, not mine. When my, 11 year old, son was born we were told that he would never walk, talk, or do much of anything in his, what they believed to be, short life. I watched as my sweet little baby fought to learn every basic skill that comes naturally to most. He did not even start sitting up on his own until he was three years old. I remember crying as I placed my little boy in a shopping cart seat for the first time. Something as simple as holding his head up, sitting without help, or swallowing were quickly becoming amazing new talents in our home. We cheered each time a new skill was learned and were amazed at his constant desire to prove the doctors wrong despite all of the many obstacles that life placed before him. I will never forget the day that I turned down the long, cold hallway at Collin’s school to see my son doing the unthinkable; he was taking a few steps. I stood there with tears in my eyes as his teacher helped him to show off his newly learned talent. Later that year he was honored by our school district for being “the most inspirational’ student. As they described his difficult life I watched my inspiration walk across the stage in his little tux as he showed off not only his huge smile but his new found talent, walking. Everyone in the room clapped with tears in their eyes. He was shaky and only managed to take a few steps but he made it to John Wooden, where he got his award. It was an amazing day for this mother. I was able to see my child honored for his talents, a day I thought would never come. I knew that he would not play a musical instrument, sport, or be in academic decathlons, so I had pushed those hopes back, way back. It wasn’t until that night, as a very pregnant mommy with our second child, I heard my sweet little boy being honored for his strength, amazing attitude, and ability to never give up. I realized in that moment that he might not play football, sing, or play chess but the talents that God has blessed him with are much greater.

So, here is the awesome giveaway!!! The wonderful and creative team at The Sandbucket asked me if would like to hold a giveaway on my blog. Of course I said YES! Seriously, check out The Sandbucket, you are going to LOVE it! There are so many wonderful articles, tips on photography, your home, wardrobe... yup, pretty much everything! Oh, and if that wasn't enough to get you excited about it.... Bubba's picture is being featured in their first issue!!!!! So, here's how to enter to win a FREE digital copy of The Sandbucket!!

1) Head on over to The Sandbucket take a look around and come back and leave a comment about one thing you love about their website.

2) Leave a comment sharing one of the talents that you have been blessed with.

3) Head on over to The Sandbucket's Facebook page and "Like" them and then come back and leave a comment letting me know.

I will randomly select a winner on wednesday Feb. 1st. Good luck!!!!

Rainy Days

2012-01-23T17:12:00.000-08:00

What do you like to do

on Rainy days??

We like to....

play in bed....

Cuddle....

Tickle.....

and Laugh!!

Our poor lil' pup just does not like the rain much at all.

So, What do you like to do on Rainy Days??

Feeling the {LOVE}

2012-01-22T20:53:00.000-08:00

I LOVE Valentines Day!

I LOVE love!

I LOVE that yesterday Bubba was feeling well enough

for a 5 minute {not joking.. 5 minutes} photo shoot!

I LOVE that Regan still let's me do fun Valentine's Day Cards.

I LOVE that some of these pictures turned out OK.

So, maybe they are not perfect... but neither are we...

and I LOVE that! wink!

The funny thing about 5 minute photo shoots.......

When he's done.... he's DONE!!

and he has no problem letting you know it! wink!

My knight in Shining armor

2012-01-19T21:54:00.000-08:00

What girl doesn't dream of their Knight in shining armor? Seriously, if you have ever watched The Princess bride or Monty Python and the Holy Grail you have wished for your Knight... right?? Ok, so maybe those movies didn't do it for you... How about a Knight's Tale?? On Christmas day my dream of my Knight in shining armor came true!!! Jason's dad collects swords, shields, knifes... all kinds of cool stuff. He will give talks about putting on the armor of God and use the real deal as his props. Well, my sweet Mother in law noticed that he was missing the breast plate and felt the need to complete his collection. So, she got him a breast plate and that net/ chain thing for Christmas. I really want to know how you go about buying a breast plate... seriously, do you just Google it?? I am not sure exactly how it happened but my sweet heart quickly became the model for all of us. They placed the breast plate and head thing on and then all of sudden a sword would appear... then a shield.... and before I knew it my Knight in shining armor was standing right in front of me. :)

I knew long before he put this armor on that he was my Knight in shining armor. We were talking with friends last night and I was joking that Hubs was not my type at all when I met him. The truth was... well... my type was pretty awful. ;) So, of course he wasn't my type... he was better! I can't tell you how many times this sweet Knight of mine has come to my rescue. There have been countless times that he has rushed home from work after a frantic phone call about Bubba. His greatest weapon is that he holds the Priesthood and is able to bless our home and family with it whenever we need him to. He is truly my best friend. I miss him when he is away from me and I can't wait for his return. I love that after 12 short years of marriage I was finally able to see in real life what I see in my heart every day.... my sweet and adoring Knight in shining armor. I am so grateful that he has been by my side with everything that is going on with Bubba. I couldn't do it with out him. I love you so much Jason!

Ok, so was that last part a little to sappy for you???

This is how disputes are handled at the Presley house.

Yes.... my very own scene out of Monty Python and the Holy Grail!

Really what more could a girl as for! :)

So glad that today is over......

2012-01-16T20:46:00.000-08:00

We might have hard days....

BUT we have a good life!!!

Today was another HARD day at the hospital for Bubba.

He was such a trooper!!!

BIG smiles all day and high fives to everyone he met.

Now, we wait for results from x rays, echo, and LOTS of labs.

(We tried to snap some pics with the cell phone. One of these days

I want one of our photog friends to tag along and truly document what Bubba's life is like.)

Then we will make a plan. Some changes are starting right away.

Things will be different and we will all adjust. I am not sure how I

will make it all work but some how it always does. :)

We were all tired by the end of the day and so glad that our day was almost over.

Not long after laying Bubba in his bed he starting crying out in pain. Regan could hear him and called me into her room. She then asked me "Mommy, why does Bubba always have to be sick?" I scooped her in my arms and we went out into the livingroom with the boys. I told Hubs what Regan had asked and then we did our best to comfort her. The TV was turned off and as I cuddled Regan and Hubs cuddled Bubba we shared our testimony of our Heavenly Fathers love for Bubba. We each did our best to explain to her but honestly none of us know WHY he is sick. It hurts my heart that Bubba has to endure so much and it hurts my heart that Regan has such worries at such a young age. We ended our talk with a family prayer. Bubba is the greatest teacher that I have ever had. Every day I learn something new from him, every day he touches someone new. There is nothing harder yet more rewarding than to be a mother.

Just keep swimming..........

2012-01-14T21:27:00.000-08:00

You know what you gotta do when life gets you down?
Just keep swimming
Just keep swimming
Just keep swimming swimming swimming
What do we do we swim, swim, swim
OH HO HO How I love to swim
When you WAAAAAANNTTT to swim you want to swim

I have been singing this Nemo song over and over this week. Regan thinks it’s pretty funny.

“The only way to get through life is to laugh your way through it. You either have to laugh or cry. I prefer to laugh. Crying gives me a headache.” Marjorie Hinckley.

Bubba and I have had a lot of dates lately and not the fun kind. If you are my friend on FB than you have probably seen lots of check in’s or comments for the hospital or dr. offices. They are worried about Bubba. I am worried about Bubba. This year has not started off how I would have wanted it to; it is going to be a hard one. We know of one surgery that Bubba will be having soon. There are LOTS of tests that Bubba will need. We won’t know our game plan until we meet with another dr. on Monday. Bubba’s other dr. is waiting for this apt. so that they can coordinate their tests and surgeries to limit the times Bubba has to be sedated. Basically what it comes down to is that they are worried about Bubba’s tummy, lungs, and heart. That’s right y’all my little man is getting old and his body is not being nice to him. I know that TTD is a mean and progressive illness but it is hitting Bubba’s little body fast and hard right now. I am grateful for the AMAZING team of doctors that he has. I trust them and feel blessed that after 11 ½ years of doing this we have built a good team to take care of Bubba. I am grateful for the sweet team in Maryland at the NIH. They have been getting LOTS of frantic phone calls from me and they do all that they can to help. This week I have gotten ANGRY, I have cried, and I have found peace in what the future might be for Bubba. Things are going to change and that is OK. With all of this change there are some things that are constant 1) Bubba’s sweet smile and attitude 2) My little family and our love for each other 3) My faith and testimony in a loving Heavenly Father that has been there to comfort me with each new challenge in Bubba’s life. I will share more about what is going on with Bubba once I know exactly what our first step will be. We have had some hard, pain filled, days BUT we have also had some pretty awesome ones as well. So, rather than go into all of the crummy details of the bad days I will share with you pictures from a good day.

Today Bubba woke up feeling good. Hubs was working and I was feeling brave. So, we went on an outing with some friends to the Aquarium of the Pacific. Pretty fitting since my mantra for the week has been…. Just keep swimming. Enjoy!

Moves like this.......

2012-01-11T21:21:00.000-08:00

should be illegal!!

Today we celebrated....

Not sure what we were

celebrating but we did!

{Ok, I got it we were celebrating..... a good day!}

Seriously, the running man is still cool right??

She get's her moves from us!

Did you know that Hubs and I met at a dance?

Well, we did.... I mean when you can........

Fist pump like this and........

do the robot like this how

could you not fall in love!?!?!?

What did you celebrate today?

A date with {bubba}

2012-01-10T21:49:00.000-08:00

{playing with the phone while we were in between apt.}
This morning I told Regan about our day and that Nana would be picking her up from school. I had to explain what Bubba and I had to do and she said "Mommy my dates with you are WAY FUNNER than your dates with Bubba." Regan and I went on a date to see the movie we bought a Zoo last week. Oh, boy does she have that one right, her dates are WAY funner!:) My fun date with Bubba today was at the hospital. We have had some worries and with those worries come tests. Bubba did amazing. Seriousy, he was a ROCK STAR when it came time to get him to do things that he normally wont do. Yes, by the end of it he had a girlfriend. While they were going over the results with me the Child Life woman was playing with Bubba, before I knew it they were off and having a blast in the halls. Bubba did not look for me once, he was FREE, with a pretty gal, and out of the testing area, he was happy! :) Bubba gave all of our new friends high fives and we were off to make an apt. with a specialist. This apt. will decide our next step. Today I have gotten angry, I have cried, I have prayed, and I have still found things to smile about. Monday will most likely start Bubba on a new journey. Heck it will start me on a new one as well. I will have to learn new skills to be able to care for my little man and you know what.... as scary as it is.......... there is NOTHING else I would rather do than be a Mommy. So, here's to better dates! {Ok, maybe not this week we have more dr. apts BUT maybe next week :-) } Tonight I will be a little sad and yes worry but tomorrow.... Oh tomorrow I will have a dance party with my kids! "Whenever I have a problem, I just dance because I realize that my dancing is worse than my problem." Is it bad that I like to have dance battles with my 7 year old? Is it bad that my favorite move is still the running man?? wink!

Our new Child Life friend had an I pad with Blues Clues on it to keep Bubba happy.
He LOVED that! :)

A BIG ol' dose of Medicine.......

2012-01-07T16:40:00.000-08:00

It is no secret that Bubba does not like to just sit around in the house. Before each break I have to plan out what we will do,this Christmas break was no different. I had it all figured out, every day there was something new and fun to do to keep the kids happy. We managed to have one fun activity with Nana and Pa Pa before Bubba got sick. Regan was so patient with every passing day and new activity that wasn't going to happen. Jason and I wanted to take the kids to Disney at least one time while they were out of school. We were hoping to go on Wed. but it came and it was obvious that Bubba was NOT ready to do anything fun yet..... Thurs. came and he started to look up.... By Fri. our boy was BACK BABY! He woke up with a smile and was grateful to be feeling good. He was not 100% but he was doing SOOOO much better. So, we decided that one last dose of medicine was needed to get our boy back to where he needed to be. He needed some magical medicine that can only be found at Disney. :) We only went for a little over an hour becuase we knew that Bubba couldn't handle much.

My little Russian princess!!

They rode two times in a row.

The first time I rode with them and the second I ran down

to take shots of them from below.

I LOVE their little hands hanging over.

This is where things get EXCITING folks.

It's no secret that our Bubba LOVES roller coasters. How do we know if he can't talk you ask? Well, by that HUGE smile on his face while we are on them. Oh, yeah and the fact that we can't walk by one with out him taking his hat off, throwing it, and then reaching for the ride. Yes, he let's us know what he likes. :) Well, there is this BIG roller coaster that Bubba LOVES watching. You can just see him day dreaming as he watches it take off. Oh, and that SMILE!!! So, we were feeling brave. Ok... hubs was feeling brave, there was no way this chicken Mommy was going to do it. Hubs took Bubba on the California Screamin!!! I know CRAZY right!

For those of you that haven't been to Disney you might be wondering what the big deal is.

Well, this roller coaster is HUGE!!!

Oh, and it has one of THESE.

Yes, my baby boy was upside down!!!

When they took off my hands were SHAKING, I was so nervous!!

What if he doesn't like... it's not like they can stop it half way around.

Regan looked at me and said "Mommy my tummy is nervous!!!"

I told her that my tummy was nervous too.

The boys got back and I got a thumbs up from Daddy!

WAHOO!!! He said that he smiled the entire time.

I can't wait to go on that ride with him when he is feeling 100%.

After that exciting ride Bubba was worn out!

I took Regan to a store to pick out a "best big/ little sister in the whole wide world" treat

and then we were on the road headed home. :)

Christmas Morning

2012-01-05T21:48:00.000-08:00

Christmas morning was perfect! We had to wake Bubba up. He was TIRED but he perked up once we started opening presents. We were all spoiled by Santa this year. My favorite gift was one from Regan's list... "please help Bubba to feel good." Bubba felt good all day. He was a BIG Mommy's boy and didn't want to leave my side but I didn't mind it. :) Regan was in Heaven with her new Barbie house. I talked Hubs into putting it together early instead of waiting until Christmas Eve, that made our Christmas Eve so wonderful.... less stress. :) After we opened our presents we got on our Christmas outfits and headed to Church to celebrate the birth of Christ.

Christmas Eve Fun {Part 2}

2012-01-03T22:29:00.000-08:00

Let me first start off by saying that Bubba is doing so much better!!! He is still not back to his old self yet BUT we are still making progress every day. We are getting WAY more smiles :) The hard part now is that he is feeling better and wanting to be active but his body is not ready for that. We are hoping that we can salvage this Christmas Vaca with a trip to Disney at the end of the week. {fingers crossed for that one!!!} Sweet Regan has been so patient that we have not had our gammed packed vaca days like we normally do. So, now that we all know that Bubba is perkin' up I thought I would get back to some FUN Christmas memories! I shared Christmas Eve part one at Uncle Bill's and now I will continue with the celebration at our home. :) I LOVE traditions... just LOVE them! I LOVE that Jason's family started some wonderful traditions YEARS ago and we continue with them still.... pretty awesome, right!?!? When Bubba was little we would go to Nana and Pa Pa's home for Christmas Eve but over the years it has become to difficult to go out with Bubba at night. Luckily, Jason has a wonderful family that is willing to SQUEEZE into our ~~tiny~~ cozy home to celebrate.

We sing Christmas Carols while Pa Pa sneaks off the garage to change.

After we sang for a bit Santa snuck in the back door!

I am not sure who was more excited to see Santa.......

The kids........

or Stanley! :)

Stanley LOVED Santa and would not leave his side.

Regan reading her letter to Santa that he brought with him.

Her questions were.....

How many elves do you have?

How many kids are on the good and Naughty list?

Do you make summer runs?

{got to love her for trying!}

You have to get the token family picture with Santa right.

We watched Mr. Krueger's Christmas and then said good night to our family.

The kids put on their new PJ's from Maw and Paw, left Santa cookies and milk, a carrot for the rudolph, and then it was time for bed!

I {heart} her a whole lot!

2012-01-01T21:33:00.000-08:00

I have shared a lot about Bubba and what is going on with him but I thought I would take a second to share with you how my sweet little angel is doing. Our natural reaction in these hard times is to worry about Bubba and what is going on with his sweet little body. The thing is, I have two children and I worry about both of them when things get hard. Bubba suffers the physical hardships of TTD and Regan, my sweet Regan, she suffers the emotional. She loves her Bubba more than I have ever seen a sister lover a brother before. Even now as I am typing these words my eyes are filled with tears at the thought of her unbreakable love and friendship with her Bubba. I hope that one day I can be half the sister she is today. God blessed her with a heart of gold. She never gets mad that my attention goes to her Bubba when she sick. Yeah... sure she gets bored but never angry. One of our home nurses once told me "wow, she sure loves her brother. I can't believe how much she truly loves him." I smiled and replied with something along the lines of ..."Oh, yes but I am sure all of the children you work with are the same way." She then went on to explain that this was not the case in several homes she worked in. "The healthy child would be angry and dislike the sick one........." Then I received the biggest compliment I have ever gotten in my life "your home is filled with love, you can feel it when you walk through the door." I guess I had always assumed that most siblings were like Regan, awesome. wink! I never truly recognized her Golden heart as a gift before, but it is! I feel so blessed to have a daughter that cares, loves, and wants to be there for her Bubba. This week has been hard on her. I have been asked questions like "our family is forever right??... Well, then does that mean we all go to Heaven when Bubba goes to Heaven... will I have to go when he goes? I don't think I will want to go when he goes." She is getting older and is very smart. . "If we don't go to Heaven when Bubba goes then who will take care of him?" It breaks my heart that these are things that she has to think about. I have learned over the years that TTD is a family illness, it affects everyone. Regan might not bare the awful physical pain that Bubba has to endure but she endures a different pain from TTD.

The other day we snuck away for a lunch date while Daddy was with Bubba. On the way home she insisted that we stop to buy Bubba balloons. :) "We have to get him some get well balloons.... they will make him feel better.. I just know they will." I feel blessed to be a Mommy to two of the most amazing kids I have ever met {ok, so MAYBE I am a little partial} I always talk about Bubba being my Hero but so is Regan and her golden heart.

This afternoon I was playing with one of my new christmas gift, a new 50m Lens, and got some sweet shots of her. {shoot, I haven't even gone over Christmas yet! Oh, I am SOOO behind.}

She was VERY excited tonight becuase Nana surprised her with a last minute sleep over!!!

She is such a special girl and I feel so blessed to have her in my life!

{Bubba is making a little progress every day and we think the meds are working!

Keep those prayers coming!}

Good bye {2011}

2011-12-31T21:43:00.000-08:00

Tonight I am bringing in the new year by tucking my sweet little Bubba into his bed and hooking him up for the night, waiting for Regan to come home from a party with friends {thank you friends!! Serisously, I have the best of friends who know just what I need most when Bubba is sick, today it was taking Regan to play.} Hubs is working, and I am sitting here watching pride and prejudice. The house is quite and warm, it is nice. This week has been hard, this year has been hard, but there have also been some wonderful moments. "If you change the way you look at things, the things you look at change." So, rather than curse 2011 for the horrible, tear filled, long nights, crummy days I will celebrate the beautiful ones! I thought I would count down the top ten in pure Johnny Carson style. :) {Regan and Jason helped me with this list! }
Favorite moments of the year........

10. Family Fun in San Diego this Spring. We were lucky enough to celebrate Pa Pa's 60th birthday with the entire family!

9. Going to Maryland and D.C. with Aunt Karen!!

8. A visit from Kai and Kylee {oh and Aunt Nancy and Uncle Ray too.} We were able to celebrate Kylee's 1st birthday with her!!!

7.A visit from a very special birthday boy all the way from Texas!!! Cousin Hunter!!

6. A visit from Maw and Paw! They were able to celebrate Regan's birthday with us!

5.A surprise visit from Poppie and Aunt Karen!

4. A special visit from Cousin Shane!

3. Getting our new addition to the family! Stanley!!!

2. Going to Catalina to celebrate 12 years of marriage!

1. Family trip to Texas!

2011 you had some wonderful memories and I will forever treasure them! Thank you to all of you that were part of each and every memory created this past year!! I hope that you, my friends, are able to find as many wonderful things to be grateful for as I am. It has been hard but it is the hard times that make she good ones that much more special!!! Here's to a wonderful 2012!!

HAPPY NEW YEAR!!!!!!!!

Bubba update

2011-12-31T14:22:00.000-08:00

Jason is cuddling Bubba so I have a minute to sit here and catch you up on our sweet Bubba. It has been a crazy couple of days! First they thought it was viral, right.... then they came back and said that they thought it was neurological. They gave everything to his neuro team and then they came back and said that they don't believe it to be a neurological issue. So, everyone now believes that there is an infection some where in our sweet little Bubba but we have NO IDEA where or why. So, we have changed out his g-tube, started him on strong medications, and keeping a close eye on him. We have been able to keep him home!!!! FIVE CHEERS FOR THAT!!!! We thought he was going to have to come with a port but so far oral meds are working ok! SIX CHEERS FOR THAT!!! Last night he woke up for a bit and even enjoyed skypeing with Maw and Paw, we even got some smiles!! :) He crashed right after BUT it was progress. Today he only slept in until 11am and he was awake enough to give him a bath and go for a little walk, we went looking for a bus! :) We found one and got a BIG smile! Bubba crashed as soon as we got home BUT again... it is progress. I feel that the medication is working and taking care of what ever is going on with our sweet Bubba. SEVEN CHEERS FOR THAT!!!! Thank you so much for your love and prayers. We feel them! Please keep them coming. Hey, while I am asking for your prayers... can I add a couple more people to your list?? I can.. Oh good, thanks! Our sweet Buddy Cayden went in for his 16th surgery to replace the shunt in his head and is recovering. Uncle Bill is in the hospital and needs your prayers, my friends. Thank you all so much!!! BIG HUGS!!!!!!!!!!!!!

prayer request

2011-12-29T21:56:00.000-08:00

This is what my sweet boy has looked like for the past 3 days. He is not doing well, friends. The scary part is that we don't know what is wrong with him. He has no obvious symptoms other than sleeping in until 1pm. If you know Bubba than you know that this is very out of character for him. When he is awake he is lethargic and "out of it." He will be awake for 20 minutes and then crash. We had a very scary moment on Monday, I wont go into the crummy details, but I thought I was going to have to give my baby CPR. This morning we had the same problem of him not wanting to wake up. His doctor felt that we needed to bring him in for blood work to try to figure out what is going on with him. After loosing and then finding his labs we still don't know much. We do know that it is not bacterial so that is good. We do know that it is viral. They are worried since he is not showing any other viral symptoms other than be lethargic. There is a bad virus that TTD kids have a hard time fighting, we are praying that this is not what we are dealing with. If Bubba is not better by morning he will be admitted for more tests to try to figure out what is going on so that they can help him. They have done all that they can to keep him out of the hospital, it's not a good place for him to be. So, here is where I need your help my friends. Please pray for my baby. Please pray for help and understanding for his doctors. TTD is rare {less than 100 in the world rare} and they are not sure what to do with him. Please pray for my sweet Regan. I walked into the bedroom this morning and she and Stanley were in bed with Bubba and Regan said "Mommy, Stanley and I just said a prayer for Bubba... he'll be ok right???" My heart hurts for her as well. Thank you my friends. I am praying that he will be back to his sweet happy self in the morning and I can continue with fun, happy Christmas posts but until then I need your prayers.

One very {special} Christmas Eve

2011-12-26T20:46:00.000-08:00

There are simple little things that make Christmas special. One of those things is being with family. I love that every year our ~~tiny~~ cozy home is filled to its capacity with family and love. I was sad at the thought of some of our family members not being here to celebrate with us. Do you remember LAST YEAR?? Well, we were able to "break" Uncle Bill out of his rehab hospital to be with us on Christmas Eve. We knew that we would not be able to do that this year, his health is worse, and his home is 30 minutes away. {Just too big of a risk} So, we decided that since we could not bring Uncle Bill to Christmas Eve we would bring Christmas Eve to Uncle Bill. Nana made one his favorite comfort foods, good ol' home made mac and cheese. :) Uncle Bill had a home nurse for a short time when we thought he would be able to stay in his home, she came to see him while we were there. Seriously, everyone that meets him falls in love, and despite only working with him for a few short months she keeps in touch and loves him. Well, his sweet nurse and boyfriend had no idea what they were getting into when they came to visit him. wink! After eating some yummy chocolate cake it was time for our Presley family tradition, reading Luke 2 and acting it out.

Regan was the Angel

Andrea was Mary

Bubba was a Sheperd

Nurse's boyfriend was Jospeh

Great Grandma Jo, Aunt C C, and Bubba were the Sheperd

{We ended up getting a big audience that wanted to see our nativity fun}

Uncle Bill and his nurse were the wise men

After we finished up reading the story of the birth of Christ from the Bible Nana and PaPa sang Oh Holy Night. They have voices of angles!!! Hearing them sing this song is a favorite Christmas tradition to many!!! Everyone in the home LOVED it!!!

Uncle Bill's face says it all. He loved it!

Uncle Bill would always play the piano with them every year, it was sweet to see him moving his fingers as they sang. I know the he was playing along with them in his heart. :)

I am so grateful that we were able to spend Christmas Eve with Uncle Bill celebrating the birth of Christ. I am not sure how many more Christmas Eves we will have with him and I do not take that for grantid. I feel so blessed to have him in my life.

{More Christmas Eve fun to come. Hubs had to work in the morning while we celebrated with Uncle Bill but he was home for rest of the fun!}

A christmas Miracle {day 23}

2011-12-23T21:42:00.000-08:00

Regan has been asking to go ice skating for a while. This was on my list of advent activates that I wanted the advent fairy to make happen BIG TIME! You see, we can’t just pick up and have a fun outing like this without MAJOR planning. They will not let Bubba’s wheel chair on the ice because of liability reasons. Regan did NOT want to go without Bubba. So, the advent fairy had to make several phone calls to make this one happen. The AMAZING people at the ice skating rink made a Christmas miracle happen for them!!!! We got it all worked out before going. :) We arrived and paid for public skate but then…. Wait for it…. Wait for it……… we got our very own, PRIVATE rink!!!!!!!! Nope, I am not evening kidding you! They only charged us the normal rate but let us have our own rink for an entire hour so that Bubba could join Regan on this AWESOME advent activity. Regan was so excited about getting out on the ice! Mommy has not been on the ice in a LONG time and I was VERY nervous. {Sorry for the bad picture quality.... didn't want to bring my "real" camera I was afraid of dropping it.... next time I will bring it. :}

Regan looked so cute and was SOOOOO excited!!!!

Bubba loved it too!!!

Bubba didn't last too long on the ice, he was COLD. :)

Bubba and I went exploring and found something very exciting on one of the other rinks.....

The Zamboni!!!!

{Ok, this is the part that I get tears in my eyes just thinking about it!}

The manager came by and saw how

much Bubba LOVED the Zamboni and......

took us to the back to see the Zamboni!!!

He was so excited!!

Then he took us over the big gate where Bubba got the

perfect seat to watch the BIG Zamboni come by.

He told the driver to honk at us when he came by....

Bubba LOVE LOVE LOVED that!!!!

Seriously, they went above and beyond to make this is a special day!

After our Zamboni fun we went back to check on Regan and guess what!!!!

She was skating like a pro!!!!

I can not even begin to express in words how grateful I am for the wonderful people at Glacier Gardens. They made this fun outing turn into a magical day for both of my children. I was talking to the managers and telling them thank you over and over again. One of the managers told me that it is VERY rare to have an open rink and how they felt it was all meant to be. I am so grateful for to the owner that agreed to it all, the wonderful managers that went out of their way to make this happen, and a HUGE thank you to the amazing Zamboni!! :)

Day 21 and 22 {All about friends}

2011-12-23T21:01:00.000-08:00

Day 21: Have our special friends over to exchange gifts.

We LOVE the Arroyo family and feel so blessed to have them in our lives.

The girls know each other so well!!!!....

they got each other the same thing and were SOOO excited about it!

Day 22: Make friendship braclets.

Let's keep it going.............

2011-12-21T20:11:00.000-08:00

Day 16: Make a Ginger Bread house

Day 17: Go and see Alvin and chipmunks with Mommy and great Grandma Jo

{Ok, here was a BIG Fairy Fail}

Bubba was not doing well and Hubs had to work late so plans changed to....

Go to dinner with Mommy and Great Grandma Jo.

Regan picked where we ate dinner.

What can I say.... she's a cheap date! wink!

Day 18: Bake and bring the goodies to friends and neighbors

forgot to get pics of the baking but managed to get pics of the delivery.

Day 19: Go and see the Christmas lights.

{Bubba had to go into the hospital that morning for his first round of botox treatments. So, we waited until the last second to tell this advent. I felt bad the last time it had to change.}

We invited Aunt C C and cousin Andrea to come and play with us! :)

Day 20: Watch a Christmas movie

{We paid for keeping Bubba up late and the morning before.... yup, he was NOT feeling well.}

No pictures.... fail.

a very special birthday boy (day 15)

2011-12-19T21:59:00.000-08:00

Advent Fairy Day 15: Do something special for someone today.

Go and see a very special Birthday boy!

It was Uncle Bill's 89th Birthday!!!

So, we got a bunch of balloons, one of our little friends, and headed to see Uncle Bill.

Notice how Regan just crawls in bed to say hi, I love that!

The girls put on a show for him complete with birthday, christmas, and church songs.

If you know Uncle Bill then you know he LOVED it!!!

A dog that lives at the assisted living home decided to join in on the party!

Then it was time to give Birthday hugs.....

and kisses and say good bye.

I was asked if Uncle Bill is "really" family. Hmmmm... how do I answer that question? If you mean we share the same DNA, no. If you mean he has been in both of my children's blessings, shared in every Christmas Eve, Thanksgiving, and Sunday dinner for as long as I can remember, and loved us like family then YES he IS family! He "adopted" Jason's parents 38 years ago when they walked into a new ward as a newly married couple and has been part of the Presley family ever since. I was blessed to get many new family members when I married my sweet heart and Uncle Bill is at the top of that list! :)

Yes, I am still doing that Advent thing...

2011-12-16T16:08:00.000-08:00

Day 12: Make a Christmas ornament out of pine cones.
{for those of you wondering.... yes, most of these activies are for Regan. Bubba does not "understand" or want to be part of most of the things that we are doing. I do try to include him when he is feeling up to it, which isn't that often lately. You know what, I think deep down he understands Christmas better than any of us. :}

Day 13: Read a new Christmas story with Mommy.

{This was a back up for a hard night with Bubba. It was PERFECT for that night. She quickly read 7 chapters to me and and then I told her "let's stop there for tonight." and she said "BUT MOM it's so good!" I think I picked a winner. :}

Day 14: Put on your new Jammies and go to the Polar express event at school.

We brought Regan's sweet little cousin with us!

I had been in charge of the book fair all week at Regan's school. Our final night to kick it all off was a polar express reading. An amazing dad made the sign and the train. It was a crazy dash to the last second to get it done but it all came together. :)

Hot Chocolate!!! YUMMMM!!

Mommy and Regan in our matching Jammies. :)

This is my partner in crime with the book fair. She is amazing!!!

After the reading the kids went and made Holiday crafts.

This picture cracks me up every time I look at it.

Regan's little friends LOVES her to death! wink!

I have to give a HUGE thank you to our AMAZING friend Sherrie!!!! {Hubs was working, of course! It is a crazy time for him.} I asked Sherrie if she would watch Bubba so that I could take Regan and she was more than happy to do it. She is AWESOME!! Seriously, not just anyone can watch Bubba. We met Sherrie at his last school, she was an aid in a different class. She has a heart of pure gold and I feel truly blessed to have her in my life!!! She wasn't even bothered by Bubba throwing up on her. wink! Thank you Sherrie!!!!!!

Day 8, 9, 10, and 11

2011-12-12T22:23:00.000-08:00

Day 8: Advent Fairy left Regan a gift.... new jammies, popcorn, and candy with a note that read "Watch Charlie Brown Christmas."

Day 9: Go to a party at a friends home to decorate giner bread houses.

Thank you Katie and Belen!

Day 10: Meet up with Mommy after her photo shoot.

Day 11: Make rice crispie treats and bring them to the Bishop during tithing settlement.

(no picture... fail)

Oh, thank you advent fairy (day 7)

2011-12-11T16:05:00.000-08:00

Day 7: The advent Fairy left a note saying "Get picked up from school for a very special lunch date."

Advent Fairy had to keep a close eye on Bubba to make sure that

he would be OK for an outing and he was!!!!!

We picked the kids up early for school for a lunch date at Disneyland!

Advent Fairy knew that our lil' family was in need of a family fun day.

We headed over to Small world..........

to make sure their names were not on the naughty list!

We NEEDED a day filled with SMILES!!!!

The boys went on a rollercoaster (Regan still doesn't like them)

so we headed over to say hi to Dancer.

After our AWESOME afternoon at Disney Daddy and Regan wanted

to do some Christmas shopping at down town disney so Bubba went off on our own.

You know Bubba's love of a good bus or train????.....

Well, you should add tram to the very top of that list!!!

We sat there and just watched the trams go by and he was just

as excited to see the last one as he was to see the first.

Advent Fairy hit it out of the park, she knew just what we needed.

A happy famiy day filled with SMILES, pickels, trams, lolipops, and no pain!

The not so awesome Advent Fairy.............

2011-12-06T20:24:00.000-08:00

I thought this year I would try doing the whole Advent Fairy thing. Well, this week I have learned two things about it. 1st, you actually need to plan these things and think ahead.. who would have thought that!?!? 2nd, I am not that good at it. Seriously, I think our Advent Fairy would get a D... ok, maybe a D+ So, I am going to have to get better at this and PLAN ahead. :) Who knows... maybe by the end of the month I can work my way up to a C+. So, here is the break down of our Advent fun so far.

Day 1: Regan got to go and play with Nana and Pa Pa. They took her to see a movie. {Bubba had his tri annual IEP and Bubba and I were at his school until after 5pm.}

Day 2: Decorate Regan's room with Christmas decoration crafts that we made. {No pictures.... advent fairy fail.}

Day 3: go to church {ward} Christmas party {Bubba started to feel crummy 30 minutes in. Bubba and I left and Regan stayed behind with a friend. No pictures... boo.}

Day 4: Have a birthday party for Nana at our home. {Bubba was very sick and I had to give my sweet sis-in-law a SOS call for help. Luckily she came and held Bubba for me so that I could get dinner started. Yes, not pictures AGAIN!.... fail!}

Day 5: Christmas FHE {Regan was in charge of the lesson}

Regan put together a very good lesson about the birth of Jesus Christ. She insisted that Stanley be front and center since this was his first Christmas with us.

Bubba was not up to par yet again... boo.

Day 6: Go to the Mall for some fun! {Thank goodness Bubba was up for this one, so many of our outings depend on him. Regan was bummed that Bubba didn't get to see Santa at the party on Sat. So, we had to make up for that!}

Our first stop was to see Santa!

Then we were off to make crafts with Mrs. Clause.

We enjoyed the carolers! Oh, and we brought Great Grandma

Jo with us. Can you spot her? wink!

Lastly, we took a trip on our very own polar express. :)

I LOVE this picture!!!

Are you doing an Advent Calendar? What fun things are you doing with your family. This not so awesome Advent Fairy needs some HELP!!!!

Photo Challenge | On Your Feet!

2011-12-05T21:51:00.000-08:00

The theme this week over at

this week is On your feet!

This is a shot of my sweet Bubba and both sets of his "feet".

I will never forget get the day when Bubba's sweet BIG, little sis yelled at a child in the store..... "WHAT ARE YOU STARING AT HE'S JUST A HANDICAPER!!!!" I was embarresed and so proud all in the same moment. In our home the reality is that Bubba's feet don't work very well but as Sis would say... "He get's to drive his COOL Bumble Bee wheel chair!" and she will even request a ride if I take him out in public and will wheel herself around where ever we are and she is so PROUD. I love that "broken" feet, a bumble bee wheel chair, and his second set of feet... his wheels are normal around here. :)

Head over to I heart faces to see more fun shots!

This must be what Heaven is like............

2011-12-02T19:35:00.000-08:00

Every day I walk into Bubba's classroom and feel blessed to be around so many sweet children. I am always amazed to see how big their smiles are despite all of the daily challenges they each face. They truly are angels here on earth. So, I wonder .......is this what Heaven will be like?

This world would be a much better place if we could be a little bit more like these sweet children....

If we took the time to see those around us with the love of Christ.

I don't think these amazing children have once judged another person.

I am grateful to be reminded of the true meaning of Christmas and the daily lessons that I learn from being around these sweet children every day.

family pictures 2011

2011-12-01T14:23:00.000-08:00

I am grateful for a wonderful friend that was very patient with me. :) I showed up with my own things and placed everyone and then would ask her "do you see what I see...." Ce Ce did an amaing job!!! I am so grateful to have so many wonderful and talented friends! She shot and I did the editing. Now, I can't wait to re-pay the favor and shoot her family.:)

and we celebrated..........

2011-11-29T20:12:00.000-08:00

Why is it that most of us wait until something HUGE happens to celebrate? Well, not around here. Bubba has had a VERY hard month, one thing after another. He made it to school only a hand full of days this month. Yesterday was a hard one for Bubba and for his Mommy. He was in a lot of pain, he cried... I cried. There is a lot going on with his sweet little body right now and I won't go into all of the crummy details but TTD stinks! ... I HATE it and I hate watching what it is doing to my baby, it is progressing and with that means more tears. I was so happy when Bubba woke up feeling good this morning. We took Regan to school, came home, gave him his meds and hooked him up for his morning feed. He was not 100% but he made it VERY clear that he did not want to be at home. First he went and grabbed his shoe and brought it over to me then I looked over to see that he had pulled to stand and was trying to get his hat off the coat rack. I went ahead and let Bubba go to school. His teacher could tell that I was nervous when I dropped him off. She kept reassuring me that she would keep a close eye on him and call me the second she became worried. I came home, took the dog for a walk, got a shower (woot woot!), and had a lunch date with myself. Then around 12ish I got a call from Bubba's teacher letting me know that he was very tired and that there were very few smiles. I am grateful that Bubba has such an amazing teacher that is so aware of his needs. So, rather than be bummed that Bubba go so tired so quickly we CHOSE to celebrate the fact that he made it to school today and that he was there for a good portion of it.

Hubs got himself an early Christmas present on black friday, an awesome sound bar.

Bubba LOVES it becuase we always turn up the base and rock out!!!

He loves to feel the speakers when the base is good....

like black eye peas, beastie boys, Stephen wolf. :)

So, we had a dance party for about 2 hours!

We celebrated the simple blessing of Bubba going to school today!

I am so grateful for the ~~small~~ HUGE blessings in our lives that we have to celebrate!

Hey, have you started your Christmas shopping yet???

Well, you know that pictures are always the best gift!

I am having photo sessions this Saturday and would LOVE to shoot your family.

Go HERE and check it out!

Texas love {The final post}

2011-11-29T11:54:00.000-08:00

I am sure that you all are getting tired of these Texas posts from weeks ago but I needed to do this last one to say THANK YOU! Thank you to Poppie and Coach and all that they did to make this entire weekend possible! Serisoulsy, y'all are awesome!!! Thank you to all of you that came to spend time with us. We are truly grateful for the memories that we made with each one of you. Thank you for taking the time to love my babies. Thank you because I am not sure when or if Bubba will be able to make this trip again. It was hard on him and he has been recovering since we got home. Thank you!

Some of the high lights from the weekend......

going to the store with Aunt Karen.... Bubba was not feeling well an she wanted to cheer him up. She said "well this might not be disneyland but..." then turned up the radio and started doing donuts and figures eights in the Target parking lot. :) He loved it and the rest of us were just waiting for security to come out and yell at us.wink!

Uncle Bubba slaming the doors every morning with Bubba!

Watching the cousins play together. Regan told me "I sure LOVE those cousins!"

Getting to Cuddle my sweet niece and nephew, the ones that are still small enough to cuddle.

The kids hidding for Coach's surprise party

Watching Paw and Bubba play with this cool ball that he brought him.

Watching Uncle Bubba go round and round on the merry go round with Bubba.

Watching my mom buzz around the house getting everything ready, she is so much like her mother that way.

Getting to laugh and catch up with cousins that I rarely get to see.

Regan's slumber party at Poppies house with Aunt Karen and all of the cool no boys allowed signs they made.

Getting to introduce my sweet Hubs and Bubba to family that have never met them!

Watching Aunt Nancy play trains with Bubba and Kai.

Uncle Bubba giving all the kids wheel barel rides.

Watching everyone love and comfort Bubba when he didn't feel well.

Going shopping with my Mom and sisters... a shopping trip is NEVER just a shopping trip with them. :)

Walking into to see all of the cousins piled in Poppie and Coach's bead watching Alice in wonderland together. {it was so sweet!}

There are so many more fun memories but I will end with these. Thank you all for such a wonderful weekend filled with tons of wonderful memories.

Texas Friends

2011-11-27T21:41:00.000-08:00

While we were in Texas we were showered with love from our Family. I think the total of people that came to see us over the weekend was 50ish.... talk about feeling loved! We were blessed to not only spend time with our wonderful family but we had a chance to spend time with some special friends. My first friend was Rochelle. We met and bonded over our common beliefs and special boys through the internet. I saw THIS VIDEO and was touched. We have since become blogging and email buddies. She fell in love with Bubba and his smile and I fell for her sweet boys as well. It was so fun to have all three of our special boys together!!! I am so grateful for Rochelle and her friendship!!

Aren't these just the three most handsome young men you have ever seen??

We met our next friends on our last trip to Texas. I have been friends with this sweet family for a while through our TTD support group. It is always comforting to have friends that you can complain, gripe, and discuss medical stuff with that truly gets it. The last time we were in Texas Bubba was not with us so they did not have the chance to meet him. So, as soon as I told them that we would all be in town they asked when and where we could meet up! :) I am truly grateful for their friendship and support.

Speaking of friends I wanted to share with you a special experience I had today at church. In Primary {the children's sunday school} they are learning that they can Show their love to Jesus Christ by being kind and friends with everyone no matter their differences. I was asked to speak to the children about how they can be a friend to Bubba and other special boys and girls. All of the teachers sang the song I will walk with you......

If you don’t walk as most people do,
Some people walk away from you,
But I won’t! I won’t!
If you don’t talk as most people do,
Some people talk and laugh at you,
But I won’t! I won’t!
I’ll walk with you. I’ll talk with you.
That’s how I’ll show my love for you.
Jesus walked away from none.
He gave his love to ev’ryone.
So I will! I will!
Jesus blessed all he could see,
Then turned and said, “Come, follow me.”
And I will! I will!
I will! I will!
I’ll walk with you. I’ll talk with you.
That’s how I’ll show my love for you.

After we all sang this BEAUTIFUL song I was able to share with them how Bubba loves roller coasters, bowling, and playing with friends just like they do. I talked for a little bit and then asked them what they can do to be friends to Bubba and those like him. Regan was the first to raise her hand.... "we can say hi to him and be his friend!" then there were several other comments. The last one was from a friend of ours she said "you can yell at him!!!!" I couldn't help but laugh. She knows Bubba VERY well and knows that he can't hear well and LOVES it when you YELL at him. I then had to go on and explain that maybe they shouldn't do that one at church. ;) I am grateful to see the love of Christ in these sweet children and their desire to love everyone. Now, let's see if next weeks church service is interrupted with a "HI BUBBBBBBAAAAAA!!!!!!!!!!!!!!!!!!!!!!!!" WINK!

Thankful.......

2011-11-24T20:58:00.000-08:00

I am thankful that after 12 years of marriage I have never had to host Thanksgiving and that I have NEVER made a Turkey. I am not ashamed to admit that I am not a big fan of cooking. I wish that I was one of those people that just loved it, shoot the hubs wishes I was one of those people, but I am not. I cook to feed my family, that's it.... nothing special. So, this year, like all the others, I am grateful that I was not in charge in anyway of cooking Thanksgiving dinner. :)

We started the morning off with the Parade. Regan asked to put on her dress that Poppie and Coach brought her back from Holland. She told me that it looked "pilgrimish" and that she needed it to fit it. Oh, I love that girl! So, she danced and sang all morning in her pilgrimish dress. :)

Bubba strated his Turkey Day feast early. :)

What did the boys think about the parade??

Yeah, they weren't so into it. :)

Thanksgiving loves from Stanley.

Then it was time to head over to Nana and Pa Pa's house!

It was a wonderful day!!

{Gratitude}

2011-11-22T23:59:00.000-08:00

This past month has been a hard one on our little family, on me. I do my best not to let myself go to that place…. To feel sorry for myself and our lot. I have to say that every once and while it happens, I go there. I have my moment I get sad and then just like that it always seems as if the clouds part and Heaven shines a light right on my blessings to point them out to me. I feel like I am one of the most blessed people in the world. I might not be blessed with a big mansion, sleep, riches, or nope not even a full understanding of this lot that we have been handed BUT I am blessed with what matters. Today I am grateful for…………

{I am grateful for my body} I am grateful that when I wake up my feet hit the floor and takes me where I need to go. I am grateful that my arms are strong enough to carry my child and lift his wheel chair. I am grateful that my ears can hear my children’s laughter and my eyes can see their smiles.

{God} I am grateful for my loving Heavenly Father. I know that I can turn to my Heavenly Father in prayer at any time and he will comfort me, guide me, and love me. I am grateful that he knows that I am not perfect and is willing to teach me.

{Jesus Christ} I am grateful for my Savior and redeemer Jesus Christ. I have such deep gratitude and love I have for my brother that loved me enough to lay down his life for me. I am grateful to know that because of him my family is eternal.

{My family} I am grateful for my sweet little family. To me there is nothing better than being married to your best friend while doing the very thing you love most to do in the world, be a mother. I am grateful that I was blessed with the amazing gift to bare and raise two wonderful Kidos! Being a mother is the hardest but most rewarding job in the world.

{Friendships} I am grateful for my amazing friends. Seriously, I have the best friends that can see past the “Oh I am fine” and show up when ever I need them with out even being asked. Each one of my friends make me a better person and I feel blessed to be worthy of their friendship.

{Modern Medicine} I hate seeing what TTD is doing to my sweet little boy but I am grateful to have so many wonderful things available to help him… medications, hearing aids, breathing machines, machines to feed him, a wheel chair to get him around, and more. I feel blessed that in each new challenge with Bubba’s health we are blessed with a wonderful new doctor to help him.

{Parents} I am blessed to have several sets of parents and each one of them is a strong and loving to support to me. I am grateful for the unconditional love that I am showered with.

{Braces} Yes, this one is silly but I am grateful that my parents made sure I got braces. I LOVE to smile, at times I smile because I am happy, other times I smile because I am strong but no matter what the situation is, a smile always seems to make it a little easier.

{Teachers} I am grateful to the wonderful teachers and aids that my children have been blessed to have now and have had over the years. Regan LOVES to read, she loves to learn. I am grateful for teachers that have planted that seed in her. Oh, those sweet special day teachers and aids. I have always said that they have a golden heart…. It is one thing to have a child with special needs born to you but it is an entirely different thing to CHOOSE to be with them every day. They are pure angels!

{Insurance} I am grateful to have good Health Insurance. I feel like I am fighting with them most of the time but I don’t know what we would do with out it. It is a true blessing!!

{Trials} I know you are thinking what???!?!? No, really I am grateful for the trials that I am blessed with. In each new trial I learn so much about myself and grow.... just when I think I am going to break I realize how strong I really am.

{Photography} I am grateful all you have to do is pick up your camera and click to capture and freeze a happy moment forever. It is the photographs of the good days that get me through the hard ones.

{My home} I am grateful for our home, it might not be big and have to best furnishing and décor but it is filled with love.

{My siblings} I know that I can count on a phone call from at least one of sisters every day. I am grateful that we are not only sisters but we are friends. I am grateful for a big Bubba that may look tough on the outside but is on the sweetest and softest guys you will ever meet.

{You} I am grateful for all of you. I don’t even know who most of you are but you pray for our family, you leave the kindest and most uplifting comments, and you give me place to express my thoughts with out judgment.

{Kidos} Ok, so I know I already said them but they deserve another one. I am grateful for what great friends they are. Regan has such a connection with Bubba and loves him so much. Bubba lights up when she comes home and smiles from ear to ear when she kisses him.

{Hubs} Yes, I know this one is a repeat too but he deserves another one as well. I feel truly blessed to say that I am married to my best friend. I am fully aware that the divorce rate for parents of special needs children is very high and am grateful that after 12 years our trials have only made us stronger. I am grateful that he still kisses me good night every night and kisses me before he leaves for work every morning even if I am sleeping.

So, how could I ever feel sorry for myself for too long when I have so many wonderful things in my life to be grateful for? I pray that you are able to have to heavens open, the clouds part, and God shine a light on the blessings in your life for you to see. If you are having a hard time seeing them give me a call I will come over with my flash light … I am sure there is something, even if it is small, to be grateful for. “If you change the way you look at things, the things you look at change.” Happy Thanksgiving Y'all!!!!!!!!!!

We got our bowl on! {Texas part 2}

2011-11-21T13:43:00.000-08:00

While we were in Texas we got or bowl on!! I hate putting pictures up that I haven't had the time to edit BUT with everything going on I don't know when I will get to it. I am grateful that they picked an outing that they knew Bubba would LOVE. :) I think almost everyone took a turn bowling with Bubba and enjoying how much he loved it! Don't let the adults trick you.... they were just as into it as the kids. wink! Oh, and I think Bubba beat most of the adults. :)

It's back baby!!!!

2011-11-18T16:58:00.000-08:00

Just as we lose sight of the sun during a storm, so we lose sight of our strength during life’s storms. But strength, like the sun, is only made visible once the thunder of doubt has quieted, the gales of chaos have calmed, and the torrent of tears have dried. ~ Our inner strength: Just because we can’t see it, doesn’t mean it’s not there. ~ by Sandra Kring

My sweet little Bubba was going CRAZY locked up in our home.

He kept bringing me his shoes.... he was begging to get out of here. :-(

I was missing that sweet smile of his.

A kiss from his sweet Sissy almost got that smile back

but it still had not come back all the way.

This afternoon I was determined to get that smile to come back out and play!

So, I went out to the garage and got out an old friend.

(When Bubba gets tired of a toy we put it in the garage so that we can bring it back later and he gets excited to see it all over again. Seriously, I could just do his Christmas shopping with old toys in the garage and he would be happy as can be. )

So, I grabbed an oldy but goody..... a DOOR!!! wink!

We all know Bubba's love of a good door. :)

and then it happened..... that BIG ol' Smile came back home baby!!!!I missed that smile of his so much this week. I am always amazed by Bubba's strength and attitude as he goes through his trials. He was such a trooper!!! I want to share this again.....

To me one of Bubba's biggest strengths is that sweet smile. It might have gone away for a week but now that the storm and tears from this week have gone away that sweet smile has returned and for that I am grateful!!!!!!!!!

Fun in Texas {part 1}

2011-11-17T08:54:00.000-08:00

Oh the fun of traveling with a sick child. First off we had to bring an extra large bag just to hold all of Bubba's medications, equipment, diapers, machines... etc. It is always fun trying to figure out going through security. Who will take Bubba? Who will stay behind with Regan and all of the liquids? For some reason they decided that Bubba looked like a terrorist threat that morning. I always fully expect Bubba to be taken to the side for a good ol' pat down since he can not go through the metal detector but man these guys went WAY over board. When they saw all of his liquid medications that pulled the two of us aside. Even though I had already gone through the metal detector they made me get an additional pat down since I was with him. They took all of my bags (with no liquids) and went through them. They checked every single one of his medications (expected) then when Jason came over and tried to help they told him to stand back. They would not let him take his sweatshirt because it was with my stuff. At this point I just kept looking at Jason saying "this is crazy!!!!" They gave Bubba a pat down and Bubba yelled at him the entire time (way to go Bubba :) I had to lift his shirt and show them the wonderful stuff sticking out of my child's body to help him. At this point you would think that they got that they were dealing with a sick child and let us go.... nope, they had to finish their VERY thorough search of us. So, you will all feel safe to know that Bubba is not a terrorist threat! wink!

Bubba did pretty good on the plane.

He did vomit but seriously is there ever a

day we don't deal with vomit!?!? wink!

We had to take a bus to our rental car and Bubba loved that!

Regan did amazing and was such a big help!!!

I love this picture, it pretty much somes

up Jason and I the entire weekend..... tired!

All of the fun from traveling was worth it

once we got to Poppie and Coach's home!!!

It was Coach's birthday the day we arrived so the

kids wanted to throw him a surprise birthday party.

Everyone hid....

(I think all of the kids squeezed in the pantry)

and we called Coach down.

and yelled SURPRISE!!!!!!

No cake for Coach... apple pie, his favorite.

Kai, Regan, and the dogs helped coach blow out his candles!!

This was the perfect way to kick off our fun family weekend together!!!!

(I have SOOOOOOOOOOO many pictures I am going to have a hard time picking.)

The power of prayer

2011-11-16T21:46:00.000-08:00

Tonight I am so grateful for the amazing power of prayer and for all of you that have offered up prayers on our Bubba's behalf. Today we went back to the doctors office and guess what... the elevator worked!!! wahoo for that! wink! The doctor checked out Bubba and he said that he is no longer worried about him, he is only concerned now. :) Hey, I will take that! So, we were able to stay out of the hospital!!! Wahoo for no hospital stays!!! I feel so blessed to be living in a day and time when we have all of the machines we need to take care of Bubba in the comfort of our own home. WAHOO for that! Bubba is still on house arrest. {I did break him out for a moment to pick Regan up from school today.} Once he is finished with his oral steriod I will be starting him on an inhaled steriod and then we get to go back and see the dr. on Monday. I can't even begin to tell you how blessed we feel that we have been able to keep Bubba home. We have so many little friends that are in the hospital right now and it is not a fun place to be. Now, I have to tell you how blessed I feel to have the most amazing friends and yes Mother in law in the world. I have been overwhelmed with phone calls, texts, and unexpected visits to check on us. My sweet mother in law picked up Regan from school on Monday and when she dropped her off she saw my HUGE pile of laundry from the trip and Bubba's vomiting. She grabbed it all and brought it back clean and folded. Tuesday night a sweet friend brought over dinner for our family and would not take no for answer! The next day this same friend along with another friend showed up on my door step... one tackled my kitchen and the other took Bubba from my arms so that I could get a shower and a little break. I had a wonderful friend take Regan to school for me and another one taking her tomorrow. I was blessed with a surprise dinner drop off tonight by another sweet friend. Seriously, I can't even begin to tell you how loved and blessed we feel. Jason just keeps telling me "you have the most amazing friends!!!" I am brought to tears every time I think about it. Thank you all for your prayers, thank you to all of you that checked in on Bubba, and thank you to all of my sweet friends that have done so much for our family!!!!!! My cup runneth over tonight! :)

We don't have a full smile yet but we are getting a little closer every day. :)

we are back {and I need your help}

2011-11-14T14:59:00.000-08:00

We made it home safe and sound from Texas last night. I Love Texas BUT California is home and it is good to be home. :) I had so much fun with my family and friends that came to see us!!! Bubba has not been to Texas in six years becuase it is so hard on him to travel. THANK YOU to everyone that came to spend time with us and truly enjoyed their time with my sweet babies. Those sweet moments made the hard parts worth it. Bubba had a hard time most of the trip and was not his super happy self but every now and then his sweet smile came out and we all loved it!! I will share LOTS of pictures and more about our trip later BUT for now I am busy taking care of my baby boy. Last night I could tell that Bubba was in a lot of pain and his cough was getting much worse. So, first thing this morning I got him into the dr. Oh, and guess what... when we got to the building we found out that the elevator was broken. At that point I just burst into laughter.... it was all that I could do to keep from crying. Quick note on the goodness of strangers.... while a woman and I were carrying bubba and his wheel chair up 3 flights of stairs a man saw us and ran to grab the chair and help us. Same thing happened on the way down, a BIG scary looking dude saw us and ran down the stairs and carried his chair like is was a feather. WAHOO for kind strangers. :) Well,the climb was worth it..... I found out Bubba is sick, like super sick. The dr. put him on atiboitics, steroids, round the clock breathing treatments, and put him on strict house arrest. If he is not looking better by Wed. then he will most likely end up in the hospital. We don't want that!!!.... with Bubba's weak immune system and SOOO many bad things going around this time of year the dr. wants to do everything we can at home first. So, here is where I need your help my friends..... send those prayers our way. Please add Bubba to your prayer list. Thank you so much !!! I will keep you posted and until then me and my little man will be doing this.........

please excuse any typos.... typing one handed{while holding Bubba} on no sleep is not a good combo. wink!

Halloween part 3 {the final one}

2011-11-03T20:26:00.000-07:00

What is Halloween with out good

ol' trick or treating fun ?!?

I have the BEST friends! Seriously, the BEST!.... One sweet friend called me Halloween morning to see if Hubs had to work. She was worried that if Hubs was working Regan would miss out on trick or treating because Bubba has a hard time staying up late. Did I tell you what happened at the ward Halloween party? No, well we got to the party at 6pm {Bubba's usual medication time} by 6:30pm he was vomiting all over himself in the middle of the party. I guess it kind of fit in with the whole Halloween theme... a little like a scene out of The Exorcist. Yup, my 11 year old son can't be out past 6:30 at night..... yeah it's a little hard. We took him home, while Nana and Pa Pa stayed with Regan at the party, and got him cleaned up, medicated and ready for bed. I had a bit of cry on the way back to the party alone, some times it these simple little things that are hard. Now that you have all of this wonderful back story from Saturday you might understand a little better why this wonderful friend called wanting to see if I needed her help. Luckily, Hubs did not have to work late and was able to join in the fun. So, we decided to all meet at our home and go trick or treating together! The best part...... Bubba managed to hang in there for the enitre night!!! He was up till 7:45!!!!!!! This was HUGE!!!!! We were all very excited and grateful for this ~~little~~ HUGE blessing.

Our FUN group of kids!!

This cute little leapord met up with us a block in. :)

Avery was so cute, EVERY time after she got a piece of candy she would shout...

"JU JU... JU JU.... MORE!!!" she had to show me EVERY piece! It was so sweet!

One of the younger girls had to take a potty break at a friend's home and the girls decided it was the perfect time to check out the good. Yes, right in the middle of the side walk. :)

I am posting this picture AGAIN becuase it was my favorite from the night.

This shot was taken at the VERY end of our night, we were

celebrating Bubba making it to the end!!!!

Halloween part 2

2011-11-01T16:36:00.000-07:00

Yesterday was a marathon! Bubba and I started the morning off with a date with the hospital. I had to take him into clinic to get him checked out for a few different things. What I thought would take us an hour ended up taking three!!! :-/ Bubba was such a trooper!!!! It was our first time with this clinic and Bubba made SEVEN new friends! Yes, those ladies fell hard for him. wink! He had one holding and hugging him by the end of it. We walked away from our fun morning with new hand splints, a new medication to add to the list, and an apt. to come back for him to get botox. We are hoping that all of this will help his quality of life and help with that darn PAIN. I feel truly blessed that Bubba has such an amazing team of doctors here in California and his awesome team back east. I think Bubba is one of the few kids out there that starts to clap when he realizes that we are pulling into the hospital parking lot. :) Bubba was tuckered out after our morning! He came with me to go to Regan's school for her costum parade. Can I just tell you how wonderful it is to have Nana and Pa Pa right across the street from her school..... well, it is pretty AWESOME!! Nana and Pa Pa watched Bubba for me while I went to the school to get the kids in their costumes then Nana walked over with him to join in on the fun.

Regan has so many friends now and LOVES her school!!!

Just a few of our friends as they walked by....

Bubba was excited to see HIS Ms. Sherill!!

(orange and red crayons)

Our beautiful, brave pink crayon breast cancer warrior!

Regan and her WONDERFUL teacher!!

Bubba was not into the costume parade at all. After we saw

Regan come by us he was ready to go and say hi to another friend that he misses!!

He was all smiles when he saw his friend........

Who was this friend you ask????.......

Well, it was his friend the bus of course!!!!

{more halloween fun to come!}

Bubba might not eat candy............

2011-11-01T08:52:00.000-07:00

BUT he still got

a treat last night!!!!!!!!!!

Happy Halloween!!

2011-10-29T22:00:00.000-07:00

Happy Halloween from Mary Poppins, Bert, and Mr. and Mrs. Banks!!!!

{We won best family costume!}

Did you Know????.....

2011-10-28T20:44:00.000-07:00

that it is disability awareness month???

Well, it is!

And if you didn't fall in LOVE with Bubba's

school in the last post.......just wait!

I was LUCKY enough yet again to be part of a very AMAZING day at Bubba's school!!!

The APE teachers, PE teachers, and volunteers from Cal State LB ran the show! Every student came in during their PE period and got to experience what it was like to have several different types of disabilites.

They had wheel chair races and got to see how hard it can be to get around in one. I was not there to see it but Bubba's teacher told me that when it was Bubba's turn to come out and show off his mad wheel chair skills he was a HAM! Oh, and of course he beat them all! :)

They learned about those living with hearing impairments and the challenges that they might face. The students all learned the alphabet in sign language. :)

They got to learn about how difficult fine motor skills can be for those living with physical disabilities. They had to try to button a shirt while wearing large gloves. They could not believe how difficult it was to do something so simple.

They learned about dyslexia and how difficult it is to

read and understand simple instructions at times.

They were taught about assistive technology devices and how important they are to some to be able to communicate. After learning about assistive technology devices they were able to ask an AMAZING fellow student questions as she answered with her device.

Lastly, they learned about visual impairments by an AMAZING student that is blind. He taught his fellow classmates the correct way to help those that are visually impaired and they practiced on each other.

It was an AMAZING day filled with LOTS of education about those with disabilities and their daily challenges. I truly believe that each one of these wonderful young men and women left having a better understanding of their fellow classmates and the challenges that they face. I am so grateful that Bubba is able to attend such an AMAZING school that LOVES and supports their fellow peers.

Grab a tissue.........

2011-10-27T21:58:00.000-07:00

When Bubba was little I was so sad at the thought that he might not ever have a friend, a true friend that you share secrets with and have sleep overs with. I was worried that not only would he not have a “true friend” but he would be picked on. My heart broke the first time his teacher had to call me to tell me about an incident on the playground when he was called the S word… you know… yes, stupid. I feared that no one would ever take the time to get to know him the way that I know him, that he would never be invited to a birthday party, or get to know the humorous side of him that I love so much.

I was so terrified of the thought of my baby going to ~~junior high~~ middle school. Just the thought of him being around all of those mean, smelly, BIG kids was overwhelming. You know, they have hormones and can be so unkind…. Right?? Well, there is a reason that I fought so hard to get Bubba into the school that he is at, simply put…. It is AMAZING!!!!! Seriously, AMAZING!!! Not only is his teacher a pure angel but the kids….. well, they aren’t that scary after all. To be honest, those BIG, smelly, scary middle school kids are AWESOME!

Yesterday I had the PRIVILEGE of helping at Bubba’s schools Best Buddies carnival. Best Buddies is a nonprofit organization dedicated to establishing a global volunteer movement that creates opportunities for one-to-one friendships, integrated employment and leadership development for people with intellectual and developmental disabilities. It is an AMAZING program!! I just realized that I am saying AMAZING a lot in this post. Well, get used to it because I have a feeling that it will be said again. Wink! Students have to fill out an application to be in the Best Buddies program, it is special, a privilege. I was AMAZED as I watched so many beautiful “true friendships” made.

EVERY time I look at this picture of these beautiful girls I cry.

Don't they look like girlfriends sharing secrets and laughing together??

It's my favorite from the day.

Bubba and his two Best Buddies. Justin, the one on the left, is one of Bubba's friends older brother.

He ASKED to be Bubba's Buddy. When I heard this my heart smiled!!! Seriously, it was so AMAZING to watch him with these boys!!! I was afraid that when he saw me he would only want me, like he normaly does. Oh No! He was with his Buddies and had no problem leaving Mommy behind to play with them. I couldn't help but get a little tear watching him forming a "true friendship" with these AMAZING boys!!!

~ The only disability in life is a bad attitude. ~

Scott Hamilton

~ A true friend knows your weaknesses but shows you your strengths; feels your fears but fortifies your faith; sees your anxieties but frees your spirit; recognizes your disabilities but emphasizes your possibilities. ~ William Arthur Ward

"If you judge people, you have no time to love them."
- Mother Teresa

"Friendship is the only cement that will ever hold the world together"

- Woodrow Wilson

"It is not so much our friends' help that helps us as the confident knowledge that they will help us."

- Epicurus Greek philosopher

To all of you wonderful parents that are raising these AMAZING children-

THANK YOU!!!! Thank you, for teaching them to see past the DIS and see their abilities. Thank you for raising AMAZING young men and women!!! You have given this Mommy an AMAZING gift..... seeing her son form a "true friendship". I can't tell you what a truly wonderful gift that is.

Love,

One very grateful Mommy

Trouble better not come around here......

2011-10-26T10:54:00.000-07:00

Last night I knew our home was safe.....

all thanks to these AWESOME three super heros !!!

Super Bubba!

Super Regan and her faithful side kick Super Stanley!

(the wash towel was Stanley's caper....

poor dog is so patient with her!)

Don't mess with this one!

It wouldn't be Fall with out.............

2011-10-24T20:39:00.000-07:00

a trip to Pa's Pumpkin Patch!!

We go to Pa's Pumpkin Patch EVERY year!!!

We talked about going to a different pumpkin

patch but then Regan said "but it's tradition!!!"

Hubs had to work on Saturday and couldn't

join in on the Fall fun BUT we were so

excited to have Pa Pa, Nana,

and cousin Andrea come and play with us!!!!

I LOVE watching these two together!

PaPa tells Regan.... "here stick out your hands and hold this

pumpkin" then he walked away and with in seconds

Regan was shouting for help! wink!

BOOOOOO!

Bubba is having a harder time walking becuase

of his hips but he LOVED walking for a bit.

It was a wonderful day!!!!

Need a costume idea for a child with special needs???

2011-10-21T17:21:00.000-07:00

I know that I am not the only parent out there that has wondered what in the world to do with my special needs child's equipment when making his Halloween costume. Over the years we have gotten creative. I thought I would share with you some of the fun things that we have come up with!

Scuba Steve!!

I spray painted a soda bottle silver and stuck some goggles on his head.

I took some cheap blue fabric and wrapped it around his walker and then used puff paint to make the waves and made some fish out of felt. It was SUPER easy!!!

Hot Air Balloon Bubba!

I will be honest this one was not EASY but it was sure fun. We took two quilting hoops and attached the balloons with string to them making the balloon part then we used PVC pipe and wrapped twine around it to support the balloons and be our ropes, last we used a card board box to make the basket.

Indiana Jones!!!

This one was super easy. I used a foam craft board and spray paint to make the bolder that is coming after him from behind. Then we just added snakes and a wip to make it more "Indy"

The white Rabbit!!!!

I don't know if I should admit it on here or not but I made a good part of his costume out of dog's costume. Yes, that's right a dog costume. I could not find a white rabbit costume and then I spotted a dog costume that I just knew I could cut up and sew to make what I wanted. :) I attached a bunch of clocks on his walked to go with the theme and a sign that read .....

on the back of his walker.

Bubba LOVED this little push car. So, one year instead of using his walker or wheel chair we took him around in the car and turned it into his speed racer!

He LOVE it!!!

My mom made the chaps and vest for him one year so that he could be a cowboy!!!

Isn't he the cutest cowboy you have ever seen!?!?!?!

Then we turned his walker into his trusty horse!!

How about a pirrrrate...... arrrrrr!!!!

We bought the costume....wahoo for that!

Then we turned his walker into a pirate ship. I found a unpainted wheel at our craft store. Then I made a flag and attached it to a rod, and drapped fabric around his walker and there you have it!!...

You better believe that Bubba's good and trusty friend, his

walker, will be part of his costume this year as well!!!

What fun things have you done to include your child's equipment in their costumes???

guess who else likes to read............

2011-10-18T19:24:00.000-07:00

Bubba LOVES to have his BIG little sister read to him!!!!

It is moments like this that just make my heart SMILE!!!!

What were some of your favorite childhood books???

{little book worm}

2011-10-17T19:53:00.000-07:00

Regan is my little book worm.

She LOVES to read.

Today she made a nice little set up in the backyard

and read a book from cover to cover.

(we just bought it today....

I was hoping to get a couple days out of it!)

Regan LOVES Junie B. Jones chapter books

but they seem to be a little to easy.

So, I have a question for you my friends......

What books should we get Regan for Christmas???

Even the best medicine did not work..............

2011-10-17T13:02:00.000-07:00

Saturday Jason has the day off... WAHOOO!!! So, we knew that we needed to play as a family. When Bubba woke up he was not happy, it was obvious that our little man was in pain. We gave him some meds and then decided that a BIG dose of Disney Magic was what he needed. We all quickly got ready and were out the door. I hooked Bubba up for his morning feed in the car, we didn't want to waste any early morning clouds. We got there and Bubba was still having a hard time, he could hardly keep his eyes open at some points. It is was not his typical happy to see Disneyland response. We went on a couple of rides and then on our third and final ride of the day it was obvious that even Disney could not make the pain go away. We were on the jungle cruise and if you have ever been blessed to ride on this ride with Bubba than you know it is one of his all time favorites. He was not smilling or getting excited like he normally would. I looked at Jason and told him "this is NOT GOOD.... we have to get him home now!!!" So, that is what we did... we rushed back to our van and then right in the middle of the parking lot he began to vomit, the pain was just too much. It broke my heart. I rode home in the back with him and held him and wiped away his sweet little tears. TTD can be an awful beast!!! When we got home Jason and I took turns cuddling him and we gave him the strongest meds we have.... there were still tears. Regan was worried that she would miss her cousin's birthday party becuase of everything that was going on. Jason stayed home and took Regan to celebrate her cousin Andrea. That night was long and HARD and I was blessed to speak in sacrament the next moring. :-/{I think Jason and I got MAYBE 2-3 hours of sleep.} My sweet mother in law came over to watch him for us while we went to church. Jason rushed home after sacrament to relieve her and then I came home after sunday school so he could go back for meetings. Bubba was doing a little better but he was recovering from the day and night before. Then it was time for Sunday dinner at the in laws.... this time Jason went with Regan and I stayed home with Bubba, we knew it would be to much for him. This is a "normal" in our lives.... who will stay home and who will go.... take two cars so that one of us is always ready to leave at any minute with him. It is a hard reality. Luckily, last night his sweet little body got some much needed rest and this morning he woke up with a great big smile, as if nothing had even happened. I admire him for his strength. He woke up this morning knowing that he felt good and he was ready to take on the world. He was not angry about the weekend or what had happened to his little body..... he was ready to play. I hope that when I grow up I can half the person that my 11 year old son is today.

“I will not leave you comfortless: I will come to you” (John 14:18).

Here's to a much better week!!!!!!!!!!!!!

Photo Challenge | Tickled Pink

2011-10-16T21:47:00.000-07:00

This week over at

This week’s theme is “Pink” in honor of Breast Cancer

Awareness and all those who have been affected by this terrible disease.

This is a shot of my favorite girl in all of her pink glory.

I pray that we are able to find a cure and that she will never be affected.

Head over to I heart faces to see more pink entries.