Girls just want to have {FUN}...

After our fun at the park on Saturday Bubba was TIRED.

Ther girls on the other hand were non stop! :)

First thing.... well, what else in this house.....

Dance PARtay Baby!

After  their Dance PARTAY they asked if they could have a spa day.

So, that is just what we did.

I sent the girls out of the room and then invited them back into the Presley Spa. :)

What is a Spa Day with out Facials?!?!?!?

and we ended the Spa Day with Mani and Pedis of course!!

If you can't tell......

I LOVE LOVE LOVE having a little girl. :)

Now, if only I can get her to stop growing up so fast! wink!!

I will not be afraid....

I find myself having similar feelings and worries that I did as a new mother.

I would pack several outfits for our outings “just in case” of explosions.

I would go and stare at my bare fridge and wonder if I REALY needed to go grocery shopping with a baby.

I would often complain about no sleep.

I would be fearful of new experiences and if I would be able to handle it with my baby.

I would set my entire life around feeding and nap schedules.

I would hate someone coming to my messy home and feeling insecure about whether or not they judged me because I didn’t “have it all together.”

I would sit up at night and watch his chest to make sure he was breathing.

I would freak out if a stranger went to touch him.

I am not sure when it happened…. {Well, yes I do… over the past several months}

BUT I am a new mother again.

I find myself in a house with a nonverbal child all day craving the interaction from an adult.

I have to pack several “back up” outfits because of some of Bubba’s new meds.

{Yeah, it aint pretty folks. Maybe it was kind of cute at 1 month but not at 11 years. Wink!}

I find myself scheduling my life around Bubba’s feeds and his medications that he needs to take with his feeds.

I wish I could worry about naps those don’t happen anymore.

Nope, there aren’t naps but if he isn’t doing well he will just sleep ALL day.

{Scary}

I find myself wondering if Jason will mind having pasta one more night this week because I really don’t want to have to push Bubba’s chair and a shopping cart at the grocery store.

I still complain of not getting sleep... that one hasn’t ever changed.

With Bubba’s immune levels being so low I am back to freaking out when someone gets to close or touches him.

I am a CRAZY new mom again!!

The part that bothers me the most is the fear of doing new things with my kids and wondering if I can handle it.

If you have been around for a while then you know that we are family that LOVES to play. We love going on adventures and checking out new places. We love to try new things. We love going to the science museum, Disney, Aquarium, parks, or just whatever cool thing we hear about.  It has never been “easy” to go on these outings with Bubba but I have never doubted my ability to be able to handle it. I have been finding myself questions whether or not I can handle an activity or outing on my own with Bubba’s new “issues”.  Just like a new Mom I found that I wouldn’t know until I gave it a try. So, I decided to start small. Hubs had to work on Saturday and I had heard about a local park that got all new equipment to make it accessible to those with disabilities. Before I knew what I was saying the words “come on Regan let’s go check out this park!!!” She was excited and then asked if she could bring a friend. “Sure, why not!” Oh, my goodness … did I really just say that. Man, before I knew it the old me was coming out more and more. On the way to the park I was prepping the girls for the worst “I don’t know how long Bubba will last and when he is done we have to leave.”

Bubba LOVED the park!!

So, did the girls! :)

Bubba made a sweet new friend that had a walker.

He kept trying to get to her walk and before I knew it

 I was headed to the van to get his out.

I was amazed at how much strength he had and how happy he was!

Before I knew it, it was well after lunch time!

On the way to the park I was warning the girls that we would most likely not be there long BUT we ended up having so much fun with our new friends that we lost track of time :). Later that night I was telling Hubs about our fun day and how grateful I was to meet our special new friends. I told him how scared I was to go by myself BUT that I will not be afraid anymore! Look, Bubba will have good days and bad days BUT there is no reason to be afraid of going on these fun outings by myself. You know why... I CAN do hard things... I have done them in the past and I will do them in the future. :)

I often sit and wonder.......

To: Collin

From: Mommy

I often sit and wonder

I often sit and wonder what you would say.

I have a feeling that you would talk for days.

Would you tell me that it hurts so bad,

Or would you say I love you mom and dad?

Don't worry my son I know what you want to say

You tell me in your own special way.

The way you wrap your arms around me tight.

The way you smile as we cuddle every night.

I often sit and wonder what you would want to be.

I have a feeling you would say I just want you to be proud of me.

A teacher, a great leader, a sales man or a fireman?

But there was someone who had a much bigger plan.

Don't worry my son I know what you were sent here to be.

A special gift to love and cherish just for me?.

No, you had a special mission from the day of your birth.

A special angel sent to teach of peace and love to all of us on earth.

I often sit and wonder how I can be so blessed

And If I am passing this very important test.

To love and protect someone so special and dear

To trust in God's will and trust that he is near.

Don't worry my son I will walk beside you every step

And when you are weak in my arms you will be kept.

You are my special angel and were sent to me on loan

But for all eternity a family we will be known.

A {SPECIAL} kind of heart....

I have ALWAYS said that it takes a special kind of heart to teach special Ed.

It is one thing to have a child with special needs given to you at birth....

You have no other choice... you adapt... you make it work.

BUT it is an entirely different thing to CHOOSE to be with kido's with special needs day after day.

I think it is probably one of the hardest and yet most rewarding teaching jobs you can do.

{if I do say so myself! wink!}

When we went to the Dr. on Thur. he told us that Bubba CAN NOT got back to school anytime soon.

He is still having immune issues, bone marrow, b4...

"If we are getting this boy ready for surgery.... he HAS got to stay out of school."

That same day I got a text from Bubba's teacher asking to stop by. :)

He was very HAPPY to see his friend. :)

She brought cards from his classmates

and a sweet gift from an aid that spends lunch period with Bubba.

It was so thoughtful of her to take the time to stop by and check on Bubba.

She did not have to do this.... BUT .... like I said......

a SPECIAL kind of heart. :)

Later that day Regan and I hung up the pictures around his bed.

He was just a little excited about it! wink!

Bubba with his Pooh Bear that his sweet aid sent him. :)

Today I am grateful for.....

those with a special kind of heart....

Good days......

Smiles......

people taking the time to think of my sweet Bubba and put a smile on his face....

and two pretty good dr. apts this week! :)

I had no idea......

That I really gave birth to....

a Spider Monkey!

{Hello Monday}

Oh, this is the kind of post that I LOVE to write!!! We had a beautiful three day weekend together and all three days Bubba felt good!!!! I know I am teary just writting the words. It has been a long time since we have had that many good days in a row. So, that explains why I am just now updating. :)  We were to busy having fun! Friday night, after Regan's hard day at school and break down, we went on a Date night. We got frozen yogurt and did lots of girl talk.  :) It was just what we both needed.

Saturday I had to work, taking pictures of beautiful people, such a hard job! Hubs took the kids to see Uncle Bill and then they did a little shopping. {no pictures.... hubs will NOT take pictures.... I think I torture him} I got done with my first shoot and got to come home to a quite home.... WHAT!!! ... a quite home!!! I KNOW!!!!  I took full advantage of this time... I vacumed with out holding Bubba, swept with out holding Bubba, folded laundry with out holding Bubba... ok, you get the picture. It was NICE! I can't remember the last time Bubba went to school and I had a quite home or empty arms. Later that day we ran to Costco. Bubba LOVES the cold room at Costco, LOVES it!!

"Enjoy the little things, for one day you may look back and realize they were the big things."

 -- Robert Brault 

It was AWESOME to see Bubba LOVING that good ol' cold room. :)

Saturday night Hubs and I got a Date Night Baby!!!! Thank you Nana and Pa Pa!!! It was very much needed and so wonderful!!! :) Sunday Bubba was feeling good and we were able to go to Church as a family!! WAHOO!!! Jason and I have been having to take turns with this one. It was wonderful because Hubs was getting set apart in his new calling at church and I was grateful we could all be there to support him. :)

 "I know God will not give me anything I can't handle. I just wish He didn't trust me so much." (Mother Teresa)

After Church Cousin Andrea came home with us and the girls got to have lunch and play together. I LOVE that Regan has a cousin so close to grow up with. :)

I kept thinking last night that today would for sure be a hard one.... I mean seriously, could it really be possible to have three good days in a row for Bubba? But then when I woke up to this....

 and this....

I knew it was going to be another good day!!!! :)

To us, family means putting your arms around each other and being there.

-- Barbara Bush

I am not sure what tomorrow will bring {ok, yes I do.. more dr. apts} BUT today was a good day and that is all that I can ask for!!!  This weekend has been a such a sweet and loving gift from God to our family. It was just what we needed. No big trip to Disney {Bubba is not up to that yet} but we were happy!!  We did not worry about tomorrow... next week..... or a month from now, if we would have done that we would have missed out on some pretty awesome memories. To most people these awesome memories might have seemed... typical... unspecial.... or even boring BUT to us they were magical! :)  Be grateful. Every day is a new canvas—a new opportunity. Our beloved President Gordon B. Hinckley has said: “My plea is that we stop seeking out the storms and enjoy more fully the sunlight. I am suggesting that as we go through life, we ‘accentuate the positive.’ I am asking that we look a little deeper for the good, that we still our voices of insult and sarcasm, that we more generously compliment and endorse virtue and effort”  I am grateful for our hard and trying days. If it were not for these days I don't know that I would be as grateful for the good ones.

{Buckle up}

Buckle up folks this is going to be one rollercoaster of a post.

{and it might get a little long.}

Lately, life feels very much like a rollercoaster over here....

So many highs and lows.

Monday Bubba and I did some of this........

{trying to break into NOT ALLOWED areas of the hospital} 

{and some cuddles while we waited for the drs.}

The biggest thing that came from this day was that said dr. wants Bubba to get a hospital bed.

She wants to make sure that we have it "before things start happening."

She is hoping that if we get a inflatable pillow top that adjust to his body than it will help with pain.

{do any of my special mom friends out there have any advice on this one??}

While we were having so much fun at the hospital Regan was off doing this....

I know!!!... Can you believe it?

She would rather have gone to Disney than the hospital

Go figure!! 

Luckily it was her good friends birthday and they wanted to steal her for the day.

It worked out PERFECT. 

Even after a day of apts Bubba still managed to flash this bad boy......

Oh, how I LOVE that smile!!!

The next day, Tuesday, was a good day.

You can read the last post if you don't believe me. wink!

Wednesday started like this..........

and ended up like this.........

yup, a trip to to the ER.

I wont go into all of the crummy details but it was SCARY.

We called Bubba's dr. and he told us to call an ambulance.

{Regan was crying and very scared}

We live VERY close to the hospital so we decided to just drive him in ourselves.

Hubs dropped Bubba and I off at the door

and I ran in with Bubba.

They got us back right away with a room.

They got Bubba stable and did x rays to make sure his lungs were ok.

After only 5 short hours {a new ER record} we were able to go home.

Regan stayed the night with Nana.

{Ok, I need to take a quick break from this post to give a SHOUT OUT to my wonderful friends!!!

They have all stepped up and helped so much!

Sister Brown who has been taking Regan to school for me so that I don't have to wake Bubba up.

Nana for getting here right away and watching Regan for us.

Kara sent her Hubs to the hospital to help give Bubba a blessing and she sent snacks :)

Brandie left dinner on our door step {we got home at 8:30 so we saved it for the next night}

Kendal took Regan lunch at school after Nana had watched her over night.

CeCe watched Regan during a dr. apt.}

Serisously, I feel sooo blessed!!!!!!!!!!!!!!!!!!!!!!!!!

How in the world could I ever feel helpless when I know that we have such an amazing team....

Go Team Presley!!!

Ok, back to my rollercoaster post

{I told you it was going to be long}

Where were we.. Oh, yes Thursay!

Back to see the dr. to check up from the day before.

All good reports! woot woot!!

So.... Thursday night we.......

had a dance PARTAY BABY!!!

and finally here we are today, Friday.

 Today I woke up to....

I know... not the best way to start your day.

BUT

Bubba has had a good day! :)

Then I get a call from Regan's school.

Luckily we have a GOOD friend that works in the office and knows what is going on.

She tells me... "She says she has a head ache and just looks over all sad."

Bubba and I rushed to pick her up.

She got in the car and I asked her if she was OK and ...

she burst into tears.

It took EVERYthing in me to not break down with her.

She is scared, tired, and grieving in her own way.

We drove through taco bell... cinnamon swirl things make any 7 year old smile.

I sent a text to Jason, Nana, Poppie, and two of my sisters to tell them what was going on.

Aunt Karen called Regan and had her laughing in no time, she is good at that.

We got home and talked....

A LOT.

This is SCARY for me, I can't even imagine how scary it is for a 7 year old girl.

Then we curled up, the three of us, and watched a movie.

Later I looked over to see this......

{She sure LOVES her Bubba.}

This past week has been a rollercoaster...

There have been some amazing highs....

and some scary lows BUT

the one constant is our love for each other

and our faith in God and his plan for us.

Please continue to keep my babies in your prayers.

Oh, and one last time....

Let's hear it....

GOOOOOOOOOOOO Team Presley!!! wink!

We CAN do hard things!!!