Saturday, March 31, 2012

{cheer mail}

Regan has been blessed with LOTS of sweet cheer mail.

It has been wonderful!

When she get's sad at night and starts asking the hard questions and becomes upset I can remind her that she has a package coming.

That always seems to put a smile on her face.

I truly feel so blessed by the kindness of others and their love for our family.

Regan was feeling very HAPPY about cheer mail and felt the need to pay it forward.

So, we thought of some friends that could use some cheer.

Do you remember this pretty lady?

Well, I said I would explain why she came by in a later post.

Today is that post.

She came by to drop off.....

a ton of cute hair bows to send to several lucky girls.

Regan and I went shopping and picked out some goodies to in the packages with the bows.

She was so excited!!

She thoughtfully selected the items for each package and.....

wrote them sweet little notes.

She told me how good it felt to be able to send some cheer to other girls that needed it. :)

She was even more excited when she heard that friends were getting their packages.

Doesn't Emily look adorable in her new hair bow!?!?!?

I am grateful for Regan's example of love and compasion.

I think sending these packages made it even more fun for her when she checked the mail one day to find....

Cheer mail all the way from......


A very sweet friend of mine from Oklahoma, that is now living in Ireland, contacted me and asked if she could send Regan some cheer.

She wrote the kindest note to Regan. :)

I have to admit I got a few tears.

The love and compasion of others during this hard time in our family's life is overwhelming.

And if that isn't enough Regan also recieved cheer mail from.............


Yes, even while Paw was in the hospital Maw still thought of my sweet girl.

"Let no one ever come to you without leaving better and happier. Be the living expression of God's kindness: kindness in your face, kindness in your eyes, kindness in your smile."
 Mother Teresa

We have been showered with kindness lately.

Thank you!! THANK you!!!! THANK YOU!!!!

Bubba is having  a hard time.

The MRI results were good and bad....

The good news.... no change.... The bad news.... no change.

We are all at a loss as to what is going on with him.

He is only awak 5-7 hours a day.

He can hardly hold himself up.

He gets so tired so quickly.

It is breaking all of our hearts.

I feel so helpless as a mother to have to watch my little boy slip away from me and not be able to do anything about it.

We meet with his team soon and will try to come up with a new game plan.

The one good thing is that when he is not in pain he sends me his own form of cheer mail.....

"The trouble with learning to parent on the job is that your child is the teacher." ~Robert Brault

I feel so blessed to have such sweet children that are teaching me every day by example.

I truly believe that in some of our darkest moments we can be blessed with the brightest blessings.

Thank you to all of you that have been a bright blessing in our lives... you know who you are!

Thursday, March 29, 2012

What a week

Things have been crazy around here and I just have not been able to find a free second to update.

Even now as I am writting this post I am going in to check on Bubba every five seconds becuase of the night we are having.

So, this is going to be quick.

Monday was my birthday!

My sweet little Regan decorated the house...

{I forgot to get pictures}

and was SOOOO excited to celebrate.

She is such a GOOD girl.

My day was going GREAT

I had some sweet little friend bring me Cafe Rio for lunch.

There was no way Bubba was getting out that day.

She thought it was pretty cool when I told her she needed to put a mask on with her runny nose.

So then of course little sis had to have one too!


 then I got a phone call.

One of those crummy phone calls you fear.

My sister called to tell me that my Dad {Yes, my BIG BAD DAD} had been taken to the hospital in an ambulance and had a major heart attack.

My heart BROKE....

I couldn't stop crying.....

I hated being so far away.

All of my family lives in TX.

My Dad was in Tulsa on business and with in hours 2 of the 5 kids were by his side.

That night Regan insisted that I needed to go out for my bday.

Nana watched Bubba for us and Hubs, Regan, and I went out to eat.

So, now you can see by my puffy eyes that I had been crying. wink!

I am so grateful for this sweet little girl and her huge heart!!

They next day was a hard one.

My Dad had open heart surgery {Quadruple Bypass}

At this point all 4 of the 5 kids had flown out to be with him.

I was at the hospital with Bubba.
It was the morning of his MRI.

He was such a trooper.

The entire time I was waiting for Bubba I was on the phone with my sister finding out what was going on with my Dad.

My wonderful mother in law came with me.

I don't think I can seriously say it enough.... I LOVE this woman.

I am so blessed to have such an amazing MIL.

I don't know that I could have gotten through the morning with out her.

Bubba was a rockstar yet again!!!

My Dad did well at first and then gave us all a big scare.

I was looking at plane tickets and a wreck.

My sweet Bubba needed me here and I also wanted to be there for my Dad.

I am grateful for my sisters and brother that have been there to care for my Dad.

I feel so blessed to know that I have such a loving and supportive family.

We would do anything for each other.

I could call any one of them tomorrow and tell them that I needed them and they would be on a plane.

My Dad is doing MUCH better and I know that I am right where I need to be.

We have had some other things come up this week as well {I will go into that stuff later} and made the comment "I think God is seeing how much I can take before I break." Then I joked and said "I might be bent but I am not broken!"

I am grateful for a loving Heavenly Father that has blessed me with such an amazing family here in CA and in TX.

I know that if I ever feel bent I can call on them to lift me up.

My sweet father in law wrote me a text and said
"you are not alone. We are here to hold up your arms, legs, shoulders, and your heart. And, the angels of God surround you. We love you. Stand as you can and we ALL will take the rest."

I can't even begin to tell you how much comfort I take in having such a loving and supportive family.

I might be bent BUT I am NOT broken. :)

Please keep my BIG BAD DAD in your prayers.

Sunday, March 25, 2012

Today I {smiled}

Spring break is only a couple of weeks away and normally I would be planning fun things to do...


Science Museum....


But instead I am scheduling... surgeries and infusions.

I think Regan is handling all of this sooooo well but every once in a while she will act out or say something like

"I just want to have fun.... I want things back like they were!"

My heart hurts for her in these moments.

Shoot, I want things back like they were.... :)

Today while it was raining Regan and Bubba sat on the sofa cuddling and I heard these words...

"Oh, there's my happy Bubba.... Oh there's the Bubba I miss so much!"

In that moment I realized that she didn't miss all of the fun outings as much as she missed her Bubba.

This year Spring Break will be different BUT I pray that Regan will have "HER" Bubba awake to play with her.

Tuesday Bubba will be going into the hospital for an MRI with complete sedation. They are worried that everything that is going on with Bubba right now is neurological. I am hoping that this is not true. The fear is that the Demyelination is progressing and taking over new areas of his brain affecting his body functions. We already know that it is taking over the optic nerves in his left eye, it has caused him to lose his hearing, and speech, and has affected his mobility and muscle tone. The fear is that it will eventually start taking of the functions of his organs. There is no other way to put this…. It stinks!!! There is nothing good about Trichothiodystrophy!! {Metabolic…. or Mitochondrial illnesses.} The worst part is that there isn’t any cure or treatment; we have to just sit back and watch it happen, watch our baby boy slowly slip away from us. We are praying that this is not what is going on right now. I am nervous every time Bubba has to be put to sleep and this test is not different. I will me a wreck until it is done and we have the results. {then he will be back for surgery in the 12th L} So, it is VERY important to find things to smile about every day. 

A smile confuses an approaching frown. ~Author Unknown

Today I SMILED ...........

Watching these two cuddle.....

and be silly! 
I smiled watching Regan and Stanley cuddle while watching a movie on the IPad.

I smiled because he smiled. :)

I enjoyed getting to spend some one on one time with Regan at Church and getting some good Cuddles as we sat there together. Jason's mom is so wonderful and comes and watches Bubba every week for us so that we can go to Church. {Jason's dad is the Bishop of the single ward so they meet later in the day.} Jason is on our Stake High Council and had to go to two ward confrences so it was just Regan and I ..... and it made me smile!

Life is like a mirror, we get the best results when we smile at it. ~Author Unknown

What made you smile today??

Friday, March 23, 2012

{Mana Mana}

Yesterday was a rough day for our sweet little Bubba.

 He slept, woke up to vomit, in pain, and more sleeping.

Last night was a hard one, we cuddled all night long.

This morning after getting Regan ready for school I went back to find this....

Stanley is NOT allowed in our bed and rarely even tries to get up there.

Bubba was hurting....

and Stanley was worried about him. :)

He managed to sit on his own today....
and  flirted with a pretty girl. :)

{More on why she came over later.}

Tonight after getting Bubba to fall asleep we went to lay him in bed and saw this.....

and inside was a BUNCH of notes to her Bubba.

She makes these sweet notes all of the time.

Oh, I LOVE her and her HUGE heart!!

After getting Bubba snuggled in bed it was time for a date.

Hubs and I made a date with Regan.

We put out the sofa bed....

made some Popcorn.....

got LOTS of cuddles....

and watched The Muppet Movie. :)

It was so nice to snuggle with Regan between the two of us and give her some special time.

She got to stay up WAY past her bed time and she loved it.

Mana Mana!!!

We LOVE the Muppets!!!

It was a perfect night.:)

Bubba has to go back to the hospital next week :( so we are enjoying every good day we get!!!

Wednesday, March 21, 2012

{Super Star}

Regan got to have a slumber party with Nana!
We love that Nana.
We got to the hospital nice and early and Bubba was HAPPY
to be there. I think he is on of the only kids that LOVES
going to the hospital. :) 
Bubba got to hang out with his good Buddy Mickey before the surgery.

and then before we knew it our Bubba was headed back. 
It took longer than expected so this Moma was a mess towards the end
BUT Bubba was a rockstar!!

They were able to place the line where they needed to and there were no problems with
his lungs like they were worried about. They did a quick xray to make sure the line was good... 
and then I got to snuggle my baby boy. 
Bubba did so good that we were able to go home!!!!...

with a few new battle scars.

and by the end of the day.... 
Yup, that BIG ol grin was back!
He is such a trooper.
Thank you for your prayers and love!

Sunday, March 18, 2012

Guess who...

got a hair cut???
This cute little girl that's who!

Hubs needed a hair cut yesterday and Regan decided that she wanted to go with him.
She came back with a cute new bob!!
Oh, I LOVE this sweet girl of mine!!!

I have LOTS to update  BUT I need to get ready to
 go back to the hospital AGAIN tomorrow. wink!
Bubba will be having surgery (at least one) this week.
I will explain more later!
Thank you for your continued love, support, and prayers!

Thursday, March 15, 2012

My sweet baby girl

Tuesday night {at midnight} after just getting Bubba’s pain under control and getting nestled all comfy cozy in my bed I heard a noise…. a LOUD yucky noise coming from the bathroom. My sweet baby girl was throwing up.  I quickly pulled her hair up, stroked her back, and told that it was OK. I sat with her in the bathroom all night, occasionally taking breaks to snuggle on the sofa. When Bubba woke up hurting Hubs took care of him so that I could continue to care for our Reggy girl. It broke my heart to see her hurting and so sick but there was something wonderful about being able to be there for her when she needed me most. Luckily it was fast and furious and was done with by the morning. She stayed home from school so that we could keep an eye on her before sending her back. That morning we had an appointment with a new home health nursing agency. Regan was very excited about this lady coming over. When I asked her why she was so excited she replied “well, if we have a nurse maybe you can do more stuff with me… maybe you can come on my field trip.”  I hate that there are so many things that I can’t do for her…. Field trips, taking her to school, picking her up from school, committing to a sport or activity for her because I don’t know if I could pick her up or drop her off if Bubba is sick, shoot even just cuddling some nights are impossible because I am holding Bubba.  I can be pretty stubborn {wink} but even I realize that it is time for some help. Yes, I am admitting it…. I need help.

Last night Bubba came down with the flu, a casualty of having a sister that loves you so much and smothers you with kisses. We spent all night in the recliner, his favorite place to cuddle. While Hubs was home I was able to sneak away {unshowered… yes, I just made up a word} to make sure that Regan got to her acting class after school OK.  I had to call for help to pick her up from her class. Thank goodness for an amazing Nana, I don’t know what we would do without her. When she got home, with dinner in hand she sat in the living room eating her subway while I grilled her about her first acting class. She LOVED it! I LOVE that she has something that is all about her… nothing to do with her sick Bubba. We continued to eat dinner, Regan sitting on the floor, and me snuggling Bubba, and I noticed Regan getting quite. So, I asked her if she was OK. She then went on to speak the words that I have been dreading, fearing every day….. “Mom, I am jealous of all of the time you spend with Bubba. I miss doing the fun stuff we used to do all of the time. I miss just having fun… I miss you coming and volunteering in my class… It makes me sad {pause} a little angry that you can’t come on my field trip because you have to take care of Bubba.”…. “I just want him to be a handicapper again…I don’t want him to be sick anymore!!!!” These words broke my heart into a million pieces. I know that she needed to get it out and vocalize it and it was good for her to finally say it but boy does it hurt my heart to feel like I am failing to be what everyone needs me to be right now.  I listened to her without judgment and then tried to remind her of the fun thing I try to make time for… when we went to see the lorax…. Getting ice cream together…. And I talked about the night before when she was sick and how there isn’t anywhere else in the world that I would have rather been than by her side.

Bubba is only getting sicker……I don’t want to go into all of the details tonight but it is hard. It is hard to watch his body betray him and feel so helpless. It is hard to watch Regan have to endure this burden as well. I am praying that this sleep deprived, crazy Mommy, can figure how to be what both of my children {and Hubs} need me to be right now, while still finding peace myself.

A HUGE thank you to everyone that is helping our family right now. There are so many sweet ladies that have brought us food… Jeanette, Kendal, Rosa, Ce Ce, Kara, and my amazing mother in law. And there are those that have been helping get Regan to and from school… Kay, Stacy, Vicky, Rosemary….  THANK YOU!!!! Your kindness just warms my heart!!!

I have so much on my mind BUT I hear a little boy crying out and I need to get ready for our meeting with the surgeon tomorrow. Thank you for your love and support.

Tuesday, March 13, 2012


If you don't have a smile, I'll give you one of mine. ~Author Unknown

Today has been one of those days that I needed to borrow, hang onto, one of Bubba's smiles.

Getting ready for more tests and holding onto to the knot at the end of my rope with all of my might.

Please pray that the doctors will have the understanding and wisdom to help my little man, my Hero.

Finding comfort in this song tonight....

Monday, March 12, 2012

{Sweet and Sour}

We have had more sours than I would want lately.

I think it is even more important to find...

To LOOK for...

To actively seek out...

the sweet moments when life is throwing so may sours you way.

Bubba has been sleeping a LOT.

The other day he woke up before noon and was doing pretty good.

So, we went on a lunch date and watched the busses go by.

This might not seem like much to most people but this was HUGE or us.

He was awake....




Friday night Regan and I got to sneak away for a date night.

We went and saw the movie The Lorax.

We were lucky enough to have Nana and Pa pa come with us.

It was such a cute movie!!!

It is a MUST see family movie!!!

On Saturday Regan got some cheer mail.

The first package was from my sweet little sister.

Aunt Karen sent Regan art supplies, a VERY sweet note, and a beautiful necklace.

The necklace read....

"I am always with you be brave have courage and love life"

So, now when she wears this special necklace she has a piece of her Aunt Karen with her. :)

Then she got a surprise piece of cheer mail.

A very sweet blog reader and virtual friend sent Regan a very sweet letter with a gift card to Disney.

Thank you Jodi for being so thoughtful and kind to my sweet girl!

After opening the mail she was very excited!!!

She was excited to share the news with Bubba.

I am so grtaeful for the sweet moments in my life!!

Now, I am off to take Bubba to yet another dr apt.