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...

Disneyland....

Science Museum....

Aquarium.......

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??

2 comments:

Susan said...

What made me smile was knowing that a piece of her normal Bubba appeared for Regan, and that you got to see and hear her happiness over it. I know this heartache is so hard for you, but I'm glad you are still noticing the precious moments that balance with smiles and happiness. You have an exceptionally grateful heart for whatever tiny piece of pleasure a day presents. That makes you such an inspiration to others! I hope you will get happier news than you expect from the tests. Meanwhile, we will be praying you through Bubba's continuing challenges and the reality of his prognosis to try to lend comforting support. He is truly such a gift to so many, but especially to you. Thank you for sharing him and Regan with us. That's so generous of you!

Anonymous said...

I always find your posts inspirational. Regan is a sensational sister. Collin has a special purpose and was a very faithful spirit in the premortal existence. And you are one awesome momma! Prayer said.

(((hugs)))
Christamae