Thursday, December 30, 2010

What a special experience...

Several months back I received a phone call from a woman…” Hi, my name is Carina. My mother is Deb from your ward. She told me that I should call and talk to you.” That first conversation lasted over an hour. Carina was pregnant with twins and lost one of the babies. Not long after that she found out that her sweet little boy would be born with Hydrocephalus {also known as water on the brain}. At the point of our first phone conversation all she had heard was bad news, no hope. She was even asked to think about if she would want to terminate the pregnancy. My heart broke for her as she shared her story with me. It became very clear to me why her mother had given her my phone number. I poured my heart out to her about everything that I have learned over the years. I told her things that I wish someone would have told me eleven years ago. What started out as a “mentorship” quickly turned into a friendship. She called me after every ultrasound, bad doctors appointment, or just when she needed to cry.

Christmas morning she gave birth to her beautiful little boy. He had surgery two days ago to put a shunt into his brain to drain the fluid. Yesterday I received a phone call from my friend to let me know how he was doing. She then invited me to meet him!!! I was so excited and could not wait to meet him today. I wasn’t sure what to expect or what the mood would be like when I arrived. I walked into an amazing sight, Carina holding her baby for the very first time. {Remember my story about the picture and holding my sweet Bubba for the first time?} It took everything in me to not start crying. It was a beautiful sight. I quickly took out my camera and captured that same moment for her.

He is a fighter. There were remnants of tape from the oxygen they weaned him off still on his little cheeks. He has a tiny little nose and the same thumbs as his mother. He responded to his Daddy playing the guitar with his little man O faces. Oh, it was just lovely. I am so grateful for this friendship and that they invited me to be part of such a special and trying time in their lives. I know that they would truly appreciate your prayers for their sweet little Cayden. He has a long way to go but like I said …. He is a fighter! He also has two AMAZING parents that love him dearly! {and a little sister that can’t get enough of him.} I have no doubt that he is yet another one of God’s special little miracles.

Thank you for letting me part of this very special day!!!!

Wednesday, December 29, 2010

Christmas morning was.............

The kids woke up to their gifts from Santa.
Regan recieved the Barbie scooter she wanted and a stocking over flowing with goodies.{She was too fast and I didn't get a picture of her reaction.} Bubba... oh, sweet Bubba.. Santa had a hard time with him. What do you get for a boy that wants for nothing. Santa found this HUGE bowling set and just knew that Bubba LOVES bowling. Sure enough all I had to do was set him down and he took off "crawling" over to them and knocked them down. Bubba also had is stocking filled with goodies.
 Santa did good this year! :)

Regan wanted a Barbie Christmas.
EVERYTHING she wanted had to be barbie.

Bubba was so excited to get LOTS of new DVD's
{most where old faves that were scratched}
We found this set of Disney park DVD's...... he was EXCITED!
After our morning fun was over we headed to Nana and Pa Pa's house for breakfast and more present opening.
Yes, MORE Barbie stuff
{my girl LOVES Barbie.....
can she stay like this forever?}
Bubba recieved a home video of Disneyland
that Nana and Pa Pa made for him.
He LOVED it.
{If we are not at Disneyland we are looking at pictures of Disneyland.... if we are not looking  at pictures we are
watching movies of Disneyland. My boy LOVES Disneyland.}

After presents were done we had to go
and test out that new scooter
{while wearing her new barbie shirt of course}
It was a wonderful day!!!
{Then End}

Tuesday, December 28, 2010

A little break from Christmas pictures......

I wanted to post this simply for my own journaling purpose.... I don't want to forget this and want to be able to look back on this one day when I need a little "reminder" :)

Sunday as we left from church IT happened, all of the fun from our weekend caught up to him. The second Jason went to buckle Bubba’s car seat he started to seize. They were bad, they lasted a LONG time. {the doctors have increased the valium but it doesn’t seem to be enough} They finally stopped in the evening and gave his sweet little body relief. That night was rough, he was in a lot of pain. I sat up with him in the living room trying to comfort him, but nothing seemed to help. The next morning my arms ached from holding him, my chest hurt from him rubbing his face against it, and my heart hurt for my little boy.

I enjoyed Christmas very much {if you can’t tell by all of the pictures} but I have to say that “something” has been in the back of my mind. You see, Bubba has been getting “worse” in some areas. One day on the phone while talking to a team member from our doctors at the National Institute of Health {in Maryland} “something” was said that I just can’t get out of head. Remember how I told you about Bubba having a hard time swallowing/ breathing at night after getting “buddy” button put in? Well, the suction machine is not helping like we had hoped. In this phone call Debbie, who has become a friend, put it in real terms. “Julie, remember how scared you were of Collin getting the feeding tube?…. Now look at how big he is and how it is helping him. Well, I just want to prepare you that he may need a trachea ….and just like the feeding tube it may seem very scary at first but it could be very good for him.” I am grateful for honesty in every conversation with me but I have to say I was no prepared for that. I new that things were getting “worse” but I just can’t imagine him with a piece of plastic sticking out of his throat. So, this visual has stuck with me over the Holiday.

As I held him Sunday night and watched him struggle so much I thought to myself…. Well, if something/ anything can help him that it has to be good. I poured my heart out in prayer, there in the living room, while holding my baby. I prayed for comfort, understanding, and strength.

Tonight I finished putting away the last of our Christmas decorations. While cleaning I swapped out the new photographs that we had received from family. Oh, I LOVE getting family pictures as a present. While taking the photographs out of one frames a picture fell to the ground. It was a picture of Bubba in the hospital after his birth. We were unable to hold Bubba for a while because he was so sick. This picture was one of the first taken of me holding my baby, my tiny little boy. As soon as I looked at this picture I burst into tears. I remember how scared I was and how terrified of the future I was. I remember how grateful I was just to hold my baby in my arms. Then my mind went back to Sunday night, I was scared and terrified of the future. I can’t explain it clearly in words but the comfort that this simple picture gave me is just what I needed. God answered my prayers with a picture. He reminded me that I have been there before and I made it through with him by my side.

I take great comfort tonight in this scripture

John 14:18 I will not leave you comfortless: I will come to you.

Monday, December 27, 2010

Twas the night before Christmas......

and this little cozy home
was filled with.....
AND guess what??.....
We even "stole" a special guest for the night.
{Ok, so we didn't steal him but we got to take
him from the rehab facility to celebrate with us!}
{Uncle Bill} 

Santa made a stop in his busy
schedule to see the kids..... 
Little ones........ 
And BIG ones........ 
Then it was time to celebrate
the birth of Jesus 
By reading Luke 2 and acting it out. 
Our AMAZING King Harad....
Christmas just wouldn't have been the same with out him! 

Then it was time for GAMES.... 
Minute to win it games.....
{Get the cookie from for head to mouth with no hands.} 

{Pull the tissue out with one hand at a time} 

{How many marshmellows can you fit in your mouth??} 
It was an OH SO FUN night!!!
Thank you family for coming to our cozy home to celebrate.
It makes it so much easier with Bubba....
we have his meds., machines, and everything he needs here. 

Every Christmas Eve the kids get to open one presetn,
from Maw and Paw.
It is always the same thing....... 
New Jammies!!!
{Thank you Maw and Paw}
Our little Superman....
 He can save me any day!
Cookies, Milk, and carrots were left....
and the kids went to bed.

Friday, December 24, 2010

The magic of Love

The other night Regan and I cuddled up and watched Beauty and the Beast together. When the movie was over we talked about our favorite parts of the movie. We both agreed that when the beast was magically turned back into the handsome prince was the BEST part of the movie. We talked about it a bit and then Regan said “I wish that could happen to Bubba” I quickly responded with “What do you mean Regan???” she thought for a second “you know… I wish that magic could make Bubba a prince…. You know make his body OK.” The TV was turned off and what was a fun conversation quickly took a very serious turn. I then explained to Regan that Bubba’s body will be perfect one day. “He will be able to run, sing, play games, talk, and do all of the things you want him to do.” This will happen when he goes to Heaven some day. I went onto to tell her that just like the Beast Bubba will be perfected with beautiful “magic” or love.

“You see, Heavenly Father loved us SOOO much that he sent his son.”

“Jesus Christ…. Right Mommy”

“Yes, Regan you are right and because Jesus loves us he was willing to atone for us so that we might be able to live with him again in Heaven. People were very mean and hurt Jesus but he knew that in order to make Bubba’s body perfect some day it needed to happen. “

“Jesus did that for Bubba?”

“Yes, for Bubba and for everyone else here on earth. Isn’t that amazing!!!”

“Yes, Mommy that is magic isn’t it…..”

“No Regan that is LOVE”

With everyone being so busy at this time of year it is easy to forget the true reason for this wonderful holiday. It is the birth of our loving Savior Jesus Christ. I am so incredibly grateful for a loving Heavenly Father that sent his son to live, teach, and die for us. I know how hard it is for me to watch Bubba in pain I cannot even begin to imagine what it must have been like to watch his only begotten son crucified. Jesus Christ knew what his journey here on earth would be and he accepted it with grace, love, and forgiveness for those who harmed him. “Father, forgive them for they know not what they do.”

Let us all remember in the fun and excitement of this Holiday to rejoice in the birth of Jesus and remember him in all that we do.

Merry Christmas from our family to yours

Thursday, December 23, 2010

The Christmas Miracle {that almost happened}

I was so excited to share our Christmas miracle with y’all. Oh, I couldn’t wait to show you pictures and tell you about Bubba’s AWSOME Christmas present. Well, nope it did not happen. You see, after six months of waiting, fighting, and one problem after the next we were told that Bubba’s wheelchair was in and they set an appointment with us for 1pm today to bring it to him. I could not believe it….. We have been given several dead lines of when they thought it might be in BUT here we were with a REAL appointment and time. Well, twenty minutes before our scheduled appointment the man called “Mrs. Presley I am sorry but we have a problem with your son’s wheelchair I will not be able to deliver it to you today.” I instantly burst into tears and responded with “WHAT????? Are you kidding….” Then I asked one question after another. The guy was not very nice and left me even more emotional. Later in the day I got the “boss” on the phone to find out what in the world is going on. I guess they should not have made the appointment to begin with because they had not assembled the chair yet. When the did assemble it the frame of the chair was flawed. Now, we will wait for a new frame…… two weeks {I have heard that one before }.

I was so upset…… really just completely disappointed. I so badly wanted this for him and how perfect would it have been to get it for Christmas. So, I cried a minute then I sucked it up and realized that this attitude would not do much for the CHRISTmas spirit in our home. So, we will wait…. With a smile on our faces.

Onto some fun things and yes, a miracle of sorts.

This morning Regan and I hosted our annual Kid's

We managed to fit a TON of kids into our tiny cozy home. :)
{I guess that is a miracle of sorts right..... no not good enough}
All of the Mommys that came.
Thank goodness for the one lonely Daddy...
Who else would have taken the picture?? wink!
The kids made ornaments and necklaces.......
decorated Christmas Cookies......
looked oh so cute in their Christmas outfits.......
had a gift exchange with each other....
{don't worry we had a boy pile and a girl one....
 no boys went home with crowns! wink!}
they played with toys.....
{Ok, I LOVE this picture. Bubba LOVES men
and did not want him to leave his side}
they played pin the nose on Rudolph.........
and FINALLY our Christmas miracle..........
SNOW in Southern California!!!!!!

The kids LOVED it!!!!

Well, almsot everyone loved it... wink!
Each of the kids took
    home a bag of snow .......
and filled up bags with candy :)
{what was left over from Santa's Sweet Shack after
they decorated their cookies}

Then they all went home.... tired, on a sugar high, and ready for lunch!