This is Her Story of Peace, Love, and Strength

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Mia's first post

I’m finally out of the hospital and doing great! Still getting used to all those meds… otherwise happy to be alive and healing. I am so grateful for everybody that has supported me these last two months, and I thank them for being there for me everyday.

Mia gets an Olympic Sized visit!!…..Cheeks and Medals!

Ok, if the size of a baby’s cheeks could win an Olympic medal, then Katie and Billy Demong’s son, Liam, would definitely take Gold!! Just like his Dad!!  Billy Demong is the FIRST U.S. athlete to win Olympic Gold in Nordic skiing!  He won it in Vancouver at the 2010 Olympics. He brought along his Silver medal as well.  Why not? 😉

We met the Demong’s in the I.C.U. back in May.  I kept seeing this pretty, young lady walking through the ICU waiting room, often with the typical “ICU Gaze”…….. one filled with tears and a look of complete sadness.  Then, one day, I saw her walk through with a smile! and I don’t remember who initiated the first conversation?…… it might have happened up on the third floor, by the now extinct coffee cart?….. but we met and shared each other’s stories.  Katie and Billy have this BEAUTIFUL young boy, or Chunk! named Liam.  Somehow, he contracted Botulism, which is found in Utah soil.  Again, with luck, parental and motherly instinct, and the Grace of God, Liam was brought to the PCMC in time to be saved.  Liam and poor Pappa and Mom suffered through a long ICU stay, but he made it! And, we hope, he and proud Momma and Pappa continue to heal and grow strong!  And, like I said, if cuteness and the ‘munchability’ of those super-sized cheeks could win an Olympic Medal, I’d say Mr. Liam is a Sure-Thing for a Gold! Just like his proud Dad!

So, one day, Katie just happened to be hauling around a couple of Olympic medals. No big deal! Just a GOLD medal,…. and a SILVER!…. OLYMPIC MEDAL!……. and, frankly…. I almost pooped my pants when I held them.  THEY’RE HEAVY! man!   And I asked Katie if she wouldn’t mind bringing them and her chubby baby back to show Mia someday….. oh, and she could bring the dude that won the medals, too……. if she really wanted.  😉     So, she said, “Sure”!  Well, Katie must be part elephant……… wait. That didn’t sound right? 😉 What I meant to say was, Katie didn’t forget! Just like Horton, and over a month later she tracked us down in the NTU and came to visit Mia!   And above is the proof!  (Note Mr. E, in the back…… totally engrossed in his ipod that he got for his 9th Birthday on the 2nd of Aug!  Olympic medals?…… hah! I’ve got ANgry Birds to play!!)

So, I wanted to tell everyone a couple of things with this post…….  One: That Olympic athletes are not always egotistical, self-centered, narcicists. They are also often like Billy Demong, and his beautiful wife and super duper cute chunky baby boy Liam!!  Great people who understand what’s important in life.  People.  And Love. And sharing both.  (Just a side note: when I told Billy how cool I thought it was that he won the Gold medal, all he said was, “Yea. It’s pretty cool. In some ways it at least is proof that I didn’t waste the last 16 years of my life! Ha!…… but really, it just means that on that day, I had a really good day. But most of the time, they just hang out in my sock drawer.”  🙂 !  Sorry, Billy. You’ll have to find a new hiding place, now.  And Billy and Katie are such down to earth people.  At least, from what I can tell. So, I wanted to give Billy and Katie a ‘shout out’, or whatever it is cool people do? Because they took the time to show my daughter some love, and put up with me at the same time.  They get free floss for life. Period.)

and Two: Mia is doing so well!!  She was given a Ride Pass ( I call it a Hall Pass) yesterday…….. that’s another cool story! And…..(drum roll, please)….. MIA IS COMING HOME!!!!  She is scheduled to be discharged on next Thursday!!!!!!! FREAKIN, YEA!!~     un-freakin-believable. 🙂  yep.   you heard me.  coming home.  After 11 weeks, she should be home on the 11th, just short of 12 weeks in the hospital!    Oh, man…… weird. But, possibly True.   Mia can barely control the hand-quiver when she thinks about leaving.

Funny story: the other day, her cousins (The ‘Girls’, the Layden girls and their mom and dad, Marsha and Scott) from New York came into town for Hadley’s wedding, and they brought Mia lunch from Hire’s.  Mia was SO looking forward to the Hire’s cheeseburger! We were sitting in the Angel Garden ready to eat when we received a call that we had to hustle back into the hospital to meet with some doctors and pharmacists.  We abruptly left the culinary fast-food-delights and wheeled our way back in, only to find out that the doctors and everyone were NOT there….. and we began waiting.  Mia, sitting in her wheel chair, said in a resigned voice just loud enough to hear, said, “That’s it. I Officially Hate this place.”  !   We died laughing!  Her burger was getting cold, her cousin’s were outside in the garden, and Mia was waiting for doctors.    We left, and went back outside to join the Layden’s and her dead cow delight….. with cheese. The doctors could wait.  😉

Notice, NO 'N.G.' TUBE!!! "Yep! I'm coming Home!" Puffy cheeks and all! (My mean parents are calling me 'Puffer', after the puffer fish in Finding Nemo. NOT COOL! 😉 ps. Prednisone side-effects SUCK! Be glad YOU don't have 'Prednisone Double Chins'! At least it's only temporary!..... at least, it Better be!

 

ox.  more soon!

t of thembricks.

ps…… as an ‘afterward’…..  as we were tucking in for bed later that night I said to Mia, “So? What did you think? Do you want to win yourself an Olympic medal??”, to which she replied, after some sincere consideration and in her sweet breath-halting voice, “Well,…. I don’t see….. why I’d ….. need one?   All they do is …. sit in your Sock drawer.”  😉  Once again…… perspective.  Out of the mouths of babes……. sleep well, everyone.    Mia is coming home ……. soon!!!

 

Mia leaves the 3rd floor on Eli's Birthday!….. Joins Kendra in the NTU!!

Too tired to do much, or to think straight………. but just got home from putting Mia down/to sleep.  She’s in her New Room, in the NTU, right across from Kendra Muller! and in a much smaller room!!

Mia was tired…… but almost lost her mind when she was told that she is going to get a “Pass” to go out of the Hospital for a couple of hours this upcoming weekend!!!  She will likely come home, see Paco, and see her Real Home…….. for the first time since May 28th.

I am sooooo tired! Falling asleep typing! but I wanted to let everyone know that Mia is working HARD! and doing LOTS of Therapy, from Speech, to Occupational, to Physical, to etc, etc….. and trying to get out of there!   She is still (of course…….. get used to it) severely immunosuppressed, and working Hard! …….. so visits are tough.  They must be SHORT! and infrequent……… for now.  So sorry! please understand.  We/she love you all…………. we just want Mia to have the opportunity to love you all for a LONG time, so call and check before coming to visit. It may not be a good time?  Then again? maybe it will??

Lastly, Today was Eli’s Birthday!!!! Elijah Thomas turned 9 years old today!! We had a great family party here at the house at dinner time, and Eli had 2 friends over, including his cousins and Grandparents.

Mr. E, at Golf Camp, with Uncle's Mitch and Mike!! LOVES it!!!

Much love to you all…….. and to our beautiful children.

 

Mia is OUT of the I.C.U.!!!… Busts Out to watch the Sunset!! 7/22/11

Room 10. CICU. Mia's Home since June 5th. Empty!

Mia's last night in Room 10. Filled with all your Love and Well-Wishes. It took the nurses a LONG time to carefully remove them all!

 

 

That’s right! Mia is OUT of the C.I.C.U.!!  ……….. with mixed feelings, on my behalf.

Sorry, I have to tell you….. it is a scary thing to leave the ICU.  In the ICU/CICU, you have a nurse….. who won’t let you out of her sight. You have at least one doctor within 10 feet, at all times.  You have all the equipment you need to ensure the life and safety of your most precious cargo.  You KNOW everyone there after 2 months…… AND….. there is the slushie machine, coffee, cold cereal, and ice cream. Not to mention free and unfettered access to the saltines and club crackers!! What More can a man ask for?? Frankly, I was in I.C.U. Heaven!  Hard to believe, I’m sure. But,….. true, I think.

I had built wonderful relationships with the staff….. from the Tech’s (who are ALL amazing people!), to the Nurses (who I can’t even imagine a world without?!), to the list of amazing doctors…….. The doctors are hard to describe. 😉  There are many of them. Maybe not as many as the number of nurses, but there are many from different departments.  And they all came to help care for, and guide the recovery of our MiaBella.  The Attendings! All of them, each in their own unique way of treating patients and their family members. The Fellow’s…… oh, they are ALWAYS  THERE!!! WE LOVE THEM!! The Residents, and the Students……. They are all so fun and amazing! I loved listening to them. I loved asking them questions, and was sincerely Amazed! at their patience with my incessant picking and neurotic dribbling on.  They answered my questions with sincere respect and honesty.  They allowed much, and helped me to come to grips with what was happening to my one and only daughter.  They were there, no matter what time of night or day, to listen, and to explain.  They were so kind to me and Heidi.  And they did their job. They…… with the tender loving care, watchful eye, and strict adherence to protocol from the mortal Angels we call Nurses and Tech’s (and RT’s, and OT’s, and ST’s!!!) and they helped Mia to get out.  Mia did much.  I think she did what was innate to her character. She fought to survive. She struggled to live and to heal. And she is battling the tug of the emotional anchor. It pulls you down like being caught in a whirlpool going down a drain. At least, that’s how I sometimes feel.  Spun around and around, an out of control type feeling. But!…….. she’s OUT!Mia and Drew, one of the amazing I.C.U. Tech's. Thanks Drew! and everyone else in the ICU! Strange, but we'll really miss you!!

 

 

They sent her to the 3rd floor.  And she is quickly growing used to her new room, and the increased ‘freedom’. She was across the hall from Maya, and around the corner from Abby, the two other young ladies who also had heart transplants recently.  Mia is happy for Maya, and for Abby, who have both been released already.  Maya was sent home last Wednesday! And Abbey (who actually lives in St. George, and so must stay in Salt Lake City for the next 6 weeks or so before she can go all the way back to St. George) was released yesterday or today? I’m not sure?  But what a way to celebrate Pioneer Day? For all of these girls, and their families…… this is truly a new adventure. A NEW Life.  One of possibility, of fear and obstacle and trial. And the knowledge that it will be difficult. But the Hope that it will be Fulfilling, Rewarding, and hopefully even FuN! But, much like the pioneers who left their homes in the East, they knew their new life would not be the same. They knew it would be hard and likely they would go without the conveniences of their previous life.  I don’t know exactly what Mia, or Abby and Maya think? But this is frequently on my mind.

Mia and her new friend, Abby Doman. you can see Abby's incredible blog/site here (done by her incredible Mother, Michelle and her sister Britt: http://abbyninja.blogspot.com/) Go Abby!! Get better! and come visit us at home when Mia gets out!

One thing that I’ve noticed about our Mia….. and it really doesn’t surprise me,….. but she is expressing Gratitude and recognizing the Simple things in life already.  The eternal saying of “Take time to smell the roses” is simply a call to our awareness. That we should savor the small, the sweet, and the simple things in life. The things we often walk right by!  We all get so caught up in the daily routine and the responsibilities of this modern lifestyle.  Yet, when you break it all down,…. if you are stripped of the very simple act of self-determination as you are when confined to a bed, or a wheel-chair,…. and you are fighting every day for air and for life,….. you are given a gift. A blessing in disguise.  And many of us would not recognize it, even then.  But Mia has.  I will try to give you a couple of examples.

These are things that has brought my daughter to tears……. tears of joy and gratitude.  How do I know? I was there for all of them that I describe, and I asked her why she was crying.  For some instances, asking was not necessary.  But, no matter what the situation, it has been humbling, inspirational, and heart wrenching all at the same time to witness…. and I just wanted to share some of these moments with you.

On her third night out of the ICU, I was tucking Mia into bed for sleep after a long day…… and I was telling her about a funny thing she did when she was still intubated in the ICU. A memory she can not share because of the medication.  There is much that happened in the ICU that she can not remember.

She asked me to tell her another story…… and for some reason, I picked the memory of one of the many times that I would place one ear-bud into her left ear, and I would put the other in mine, and I would play many of the same songs over and over, and sing them with/to her. In a way, I was hesitant to tell her about this, because one of the songs I played over and over was One of the songs was Justin Bieber’s “Never Say Never”, and before May 28th, she didn’t really enjoy listening to Bieber’s music.  But I couldn’t help it.  Eli had adopted two different songs as his ‘pre-climbing psych-up’ songs: “Never Say Never”, by Justin Bieber, and Eminem’s “Lose Yourself”.  And if you’ve ever really listened to the words for “Never”, you might see why it spoke to me and I hoped it would speak to Mia.  I played that song in her ear, held her hand, squeezing and rocking to the beat and emphasizing the message:  

“Never say Never…….

I never thought that I could walk through fire
I never thought that I could take the burn
I never had the strength to take it higher
Until I reached the point of no return

And there’s just no turning back
When your heart’s under attack
Gonna give everything I have
‘Cause it’s my destiny

I will never say never
(I will fight)
I will fight till forever
(Make it right)

Whenever you knock me down
I will not stay on the ground
Pick it up, pick it up
Pick it up, pick it up
Up, up, up, up, up and never say never

I admit, I shed a few tears holding my daughter’s hand, praying that she too believed it to be her destiny…… as her heart was truly under attack, to fight, to never give up, and never say never and to give it all she had.

Then, one night I was trying to play music that I KNEW Mia liked, and we found Katy Perry (Thanks Mindy for clueing me in), and I heard her “Firework” song.  Wow! Not only are the words amazing, but boy! can that girl sing?! Nice. And so, here are those lyrics:

Do you ever feel like a plastic bag
Drifting through the wind, wanting to start again?
Do you ever feel, feel so paper thin
Like a house of cards, one blow from caving in?

Do you ever feel already buried deep?
Six feet under screams but no one seems to hear a thing
Do you know that there’s still a chance for you
‘Cause there’s a spark in you?

You just gotta ignite the light and let it shine
Just own the night like the 4th of July

‘Cause baby, you’re a firework
Come on, show ’em what you’re worth
Make ’em go, oh
As you shoot across the sky

Baby, you’re a firework
Come on, let your colors burst
Make ’em go, oh
You’re gonna leave ’em falling down

You don’t have to feel like a waste of space
You’re original, cannot be replaced
If you only knew what the future holds
After a hurricane comes a rainbow

Maybe you’re reason why all the doors are closed
So you could open one that leads you to the perfect road
Like a lightning bolt, your heart will blow
And when it’s time, you’ll know

Boom, boom, boom
Even brighter than the moon, moon, moon
It’s always been inside of you, you, you
And now it’s time to let it through

Etc.

So…… Remember when you were young? and you’d sit around picking through your albums making “Custom Tapes” with all your Favorite, most inspiring songs?? You’d have tapes all with inspirational songs? or tapes for working out? or those dreaded “Love Song” tapes that we ALL made for our girlfriends??!!…… c’mon!! admit it!      well…… I did.  So, I can’t help it. Old habit die slow, painful deaths. If ever.  Anyway,…..

So I played these song with Mia, singing them into her ear, hoping that my desire to see her through combined with the inspired lyrics in these songs, would ‘see her through’ or help her to find the Courage and Strength to Believe in Herself and aid her in the struggle to define her own future and destiny.  I did so with the intensity I’ve become known for,….. for good and bad,…. and when I would get done with a song, I’d have to excuse myself from her room so I could blow my nose and wipe all the tears and snot that would be streaming down my face and inside my mask! Ha!  Those poor nurses have become numb to ‘gross’ things, but my emotional displays were probably a step up,…….. or down. I don’t know?.

So, back to the story……….. I told her of this, and how I would sing into her hear, and how when the song was done I would whisper into her silent ear, hoping she could hear me, hoping she could feel me, and I would tell her, “Don’t you give up! Don’t you dare give up!  We Love you! We’re here!!”…….. and when I told her I had done this she began to cry.  I leaned down and tried to give her a hug, and as we were having a pretty good time talking about snot and my dramatic and possibly poor choice of songs, and Mia was just moments earlier smiling, I thought maybe she was in pain? So I asked her, “What’s the matter, Mia?? Are you in pain?”  And she just slowly shook her head , “No.”

“So, what’s the matter?” And in her quiet, soft little voice, one word per breath…..

“I’m,……. so,……. lucky.”

 

Yes. And so Blessed.  And so am I.  So are we all.

Story Number 2:  Grass

In the wise words of the Italian P.T., “This girl’s got to get OUT of this place! She’s got to get some LIFE in her!!”  so,……. we busted out again!  Mia and I hummed the Mission Impossible tune as we made our way out the south doors! Telescan en-t0w, hoping the monitor wouldn’t flat line again, like it did the night before when we ‘Busted Out’ across the street to watch the sunset! (That’s another story………. but I’ll try to load a photo of that excursion too!)

Immediately after her last PT session in which she actually stood upright for more than 10 seconds with the ‘walker’ (see video on Facebook), we decided to visit the area east of the Maran Eye Center, south of PCMC.  While we were there, I looked over and thought to myself….. “I wonder if she’d like to feel grass between her toes?…. I know I used to LOVe to lay on the grass in the summer and just stare into the sky…..”   So, I asked Mia, “Do you want to feel the grass?”, “Sure.”, “Well, hold on……. I’ve got an even better idea.”…….

So I positioned the chair, made sure I had enough tubing for the oxygen, and I lifted my 12 year old daughter from the wheelchair and placed her on her back in the grass……… and stepped away.  When I stepped back up, she was crying. I asked her how it felt? And she said, “Incredible!”………to be so inspired by the feeling of grass on your skin….. this re-birth that Mia is experiencing is proving to be the Blessing of a Lifetime. One I intend and hope to experience with her, as much as I can.

So we lay there for over 30 minutes, just staring into the blue sky, and Dad eating the soft, sweet, white ends of the grass. (Something I’ve done since a kid…….. may explain some things, who knows?) And Mia just enjoyed the sensation of cool summer grass on her skin.  ……… until, that is, we were BUSTED by our Nurse!! Mary found us when some friends came to say “Hi” and they couldn’t find us in the hospital! ugh!  Dad is going to lose his privileges!!!   (I hope Dr. Everett isn’t reading this?!) But she had her mask on!……….. most of the time!! 🙂  Thanks Jazmin, Jason, Sage, and Ev, for saying hi and laying a little love on Mia as she soaked up the sensation.  Let’s hope it’s not the last time we spend a little time together sitting around on grass.

😉

May you all take a moment to Smell the Roses…… take time to stop.  Just STOP! ……. and look around.  Begin your OWN Awakening. Begin seeing the Divine in your Life. And all around you.  And take time to love……. After all,… isn’t that all we really want?

For MiaBella………. tbrick of themBricks

 

In her Own words…. and that of her loud mouthed father.

Mia and her friends, Grace and Genevieve

Mia, one of her wonderful nurses, Tracey, and Eli after a great day!

watch the video below to hear it in her own words…….

Go to the Facebook site…….. I can’t seem to upload the video here. Sorry.

 

IMG_1346vid

A Night of Life, Love, Friends, and Michael Franti!

Mia sporting a Harry Potter scar! He may be the 'Chosen One', but Miracle Mia is the Survivor!

It’s about time for an update, and I’m sorry, but I’ve been too tired or too busy to do one any sooner. And I know how many people have been waiting for one. Thank you to each and every one of you who are checking for updates; who are sending your thoughts, your love, and your continued prayers for Mia’s full recovery.  I can tell you, it must be working. It’s ALL been working. Someone, including MiaBella, has been listening to your pleas, your prayers, and your calls for intercession. Personally, I’m glad and happy to announce that I’ve signed up for an “Unlimited” plan on my prayer and ‘Miracle Request Texting’ contract. Otherwise, I’d beWAY over my minutes this past month and a half!

Back to the post, and with respect to why it’s taken so long to do a new update, well……. in all honesty, for a couple of weeks there really wasn’t much that I wanted to ‘post’ about. Mia was really in a ‘holding-pattern’. Things weren’t getting dramatically or particularly worse, but she wasn’t getting better either. And while many kids were coming and going from the ICU,  it appeared that at least part of the C.I.C.U. was destined to be renamed after our little girl based upon length of stay.  And how fun do you suppose it is to post or even talk about how crappy things have been going? or the lack of progress? No. That stinks.  So I didn’t.

I suppose that’s not an overly accurate description of what’s been happening, but I can’t really explain what it’s been like on a day to day, or even week to week basis at all.  You see, for whatever reasons, Mia entered another stage of this adventure which involved a healthy dose of ‘Up and Down’, with a special emphasis on losing weight, lousy lungs, and transient fevers. One day, her lungs would be better. That’d be the ‘Up’ part.  The next, the lungs would be worse.  That’s the ‘Down’. One day she’d be lucid and aware. The next, she wouldn’t open her eyes unless urged to do so. You get the picture.  And frankly, this part of the story isn’t much fun to write about.

But, Lucky for us, and you all, this is Mia’s Story! MiaBella Brickey to be specific. And that seems to mean “expect the unexpected”! And, true to Miracle Mia form and fashion, five days ago (Monday, July 11, to be exact) Mia decided to climb up on that stubborn mule (according to her Mom) and “turn it for home”!  And you know what happens when you turn ANY horse, let alone a mule, for home?  You better have the saddle strapped down tight, and be ready to duck when she hits the stable door! (Uncle David and Uncle Roger will understand this.)

Dr. Kaza removed her last chest tube Tuesday, July 12, while they were doing the weekly biopsy of her heart, and checking the pressures in the heart itself. The report was that her heart looked better than it ever has! And that the pressures in the heart were the best to date!  All good things!  He placed 3 new sutures in her chest incision, which made Dad feel much better, and removing the last chest tube seemed to have really kick-started her lungs!  And the very next day Mia was given permission to make an excursion to the 3rd floor outside deck, to look out over the valley …………….and enjoy some fresh valley air!

It might be impossible for me to relate everything that’s happened since the last update a couple of weeks ago, with special emphasis on since Tuesday, and the first trip outside on Wednesday;

So, in brief summary:

Mia's first day without the endo-tracheal tube!

July 4th (Mon.): Mia is extubated!  We can’t believe she seems able to support herself with nasal cannula and Oxygen only! In celebration of Mia’s Day of Independence! and our Nations Birthday, I went to the ReAL Salt Lake Soccer game! It was amazing! Front Row! A gift from a brother.

 

 

 

Mia battles the Bi-Pap face mask while Ceeta watches over her.

July 5th (Tues): Back on respiratory support in the form of Bi-pap.  We began with a nasal mask, and after several tense hours we moved to a full-face mask.  Mia became very withdrawn, and responsive or awake only when aggressively prodded. At one point in the afternoon/evening, we were on the verge of replacing the endo-tracheal tube.  Her blood-pressure, pulse, and O2 saturation were all over the place.  It was a stressful night.

 

 

July 6 (Wed.): ….. more of the same. At least Mia seems to have stabilized on the full-face mask of Bi-pap.  Still not really responding unless bugged. Still can’t talk, but can barely whisper a little.

everyone climbs aboard as the boys from ReAL Salt Lake visit and express support of Mia.

July 7 (Thurs.):  ReAL Salt Lake!!  The visit from Nick Rimando, Kyle Beckerman, Johnny Kimball, and Brook Bingham from ReAL Salt Lake.  We took her mask off for the short visit, and Mia was able to enjoy seeing these good men. Still can’t talk above a whisper, but is able to keep her eyes open for a few minutes at a time.  Mia seems a little better. I’m feeling better……… I think.

 

 

Mia enjoys her first view in over a month.

July 8th (Fri.): Mia surprises us all by being awake enough to make her very FIRST trip out of her room and off the bed to the window overlooking the valley and city.  It was absolutely amazing! It wasn’t the sunset I wanted for her, but she just stared and stared…… Salt Lake City sure is a beautiful sight, and never more beautiful than this night!

Look at those eyes....... the Eyes of a Warrior. I WILL survive!

 

 

 

 

 

 

 

 

 

 

Eli, Taye, and Mia C. join Kyle and the boys in the 'wall'.

July 9th (Sat.): Was a great day! Jamison (Kendra’s Dad) and some friends  joined Eli and I at the

cotton candy........ I think?

ReAL game against Dallas.  Not only did the boys win 2-0! Mia continued her steady pace……. just trying to get used to the Bi-pap, and showing the Doc’s what a Miracle Kid she is.

 

 

 

 

July 10th (Sun.): Sunday Mia began the day with little fan-fare, but soon things ramped up. She received a FIFA Women’s Soccer

treats from Germany!! Danke!!

jersey from our friends in Germany! (displayed by brother Eli!) Danke, Andy, Susanna, und Maxi!! And the evening was greeted by an excellent sunset and rainbow combination! Mia celebrated ReAL and her own progress with another visit to the window.  Maybe good things are really on their way?!

 

Mia sports the K-D's and greets me with a smile!

July 11th (Mon.): You can’t believe my emotions as I am greeted with my daughter’s face Without the mask, and a smile!!!

 

 

 

 

Eli and Mia embrace. Best Friends.

July 12th (Tues.): The Big Day! This is the day I was writing about earlier.  And Eli greets his sister and hears her voice for the first time since May 27th, as they tell each other, “I love you”.

 

 

 

 

Mia's first trip outside since May 28th

Mia, Kendra, and Megan. Three Beautiful and Amazing young ladies. Miracle girls...... each of them.

July 13th (Wed): One day after getting her chest tube out, Mia is rewarded with her FIRST trip outside!!  Dressed up with sun-hat and stylin shades, Mia made the first trip into the open air in over a month and a half.  We were given permission to visit the 3rd floor deck, and this is where she met Megan, a beautiful girl from St. George, who has endured much, including a heart transplant, and risen to the challenge.  She and Mia talked a little before Kendra joined us outside, where we were all given the gift of song as the girls all sang together accompanied by Carissa (the Music Therapist at PCMC and a beautiful lady in every way!) Here’s a link to a utube video with lyrics.  http://www.youtube.com/watch?v=OZjqbn4SRX0

Me, Mia, and Heidi


The moment, the’video’ of these three girls and Carissa singing this together was one of the most beautiful and touching moments of this entire experience.  Just before they sang this together, Mia told Megan that she thought what had happened to her was “a curse”. We hope, that with time and everyone’s love, Mia will find a way to see this experience as something other than a Curse. But, right now, who can blame her?

 

 

So, Since Tuesday, so much has happened. Unfortunately, as Mia begins to get ‘better’, her awareness of her New Life has also grown, and brought with it major frustration and a solid dose of untold sadness.  Perhaps the fact that we are moving away from mere survival, and into realization of our situation, this is a good thing?  Life must go on.         Sometimes, when it’s quiet….. and I’m alone,…… I think a lot like my daughter.  And I just wish it was a bad dream.  But it’s not.  And then, I get a call from a brother of mine thousands of miles away, and I’m reminded of my role, of my strength, and of the beauty in this tragic experience. It’s Life. And it’s ALL beautiful.  Just ask Michael Franti, who says it like no other!

Thursday night Heidi and I were given the gift of two tickets by a thoughtful and beautiful lady Kami, and we spent our first “date” amidst an overwhelming feeling of Love, Acceptance, Joy, and Hope!  If you’ve never seen Michael Franti and Spearhead in concert, then you should make the effort.  It was the most uplifting and emotionally positive concert I’ve ever attended, verging on a spiritual experience. I would like to write more about this incredible moment, but that would take another couple of days for me to find the words.  Let me just say that it was more than I ever expected, and everything we needed. After the concert I approached Michael, who was greeting people, and gave him a “Pay it Forward” wrist-band. Heidi said, “Give me your ‘Mia’ bracelet”, and she made her way back to Michael, quickly told him Mia’s story, and he gave her his total attention. He looked her in the eyes, gave her a hug, and reached into his pocket and gave her a guitar pik.  The hug and intense eyes were the real gift. Along with the words throughout the night. So, thank you to Tiffany Glasgow for the ‘Just Add Fun’ picnic package full of love, and everyone there who came up to give a hug and express your love.  It was amazing.

So, as I watch the USA vs. Japan in the FIFA Women’s Soccer Final with Mia, we cheer not only the Stars on the field, but we cheer Mia’s success, and impending departure from the C.I.C.U.! Yes, it’s true! Mia might be out of the unit by early this next week! Keep your fingers crossed and your thoughts and prayer’s coming!

We love and appreciate all of you!  Give your loved one’s a hug. Cherish the moments.

 

 

“Wise folks count their blessings. Fools count their problems. Life in this Love. Love in this Life. We say, La la la la la, la la I got love for you!”-Michael Franti

 

A Visit from Nick and Kyle of RSL!

Nick Rimando and Kyle Beckerman give the Thumbs Up! with MiaBella

Mia was visited by a couple of studs yesterday.  They also brought along two guys who happen to play soccer for a living.

Johnny Kimball ( I think he goes by “John”, but I’ve always known him as “Johnny”, and he’s too nice a guy not to call him by his childhood moniker) and Brook Bingham, both who work for and with ReAL Salt Lake Soccer, and who are friends and fellow Sigma Chi’s, went out of their way to bring Nick Rimando (Goal Keeper) and Kyle Beckerman (Midfield/RSLCaptain) to the hospital to meet Mia and our new friend, Kendra Muller.  Kendra is currently in the N.T.U., but was in the P.I.C.U. with us for about a month.  She is also a soccer player (like Mia) and suffered a spinal chord  injury that has temporarily put her on the sidelines.

Johnny and the boys brought Mia and Kendra their own ReAL Home Jersey’s with their names on the back!!! Mia get’s to share Nick’s number (18), and Kendra shares Kyles (5).  I will tell you, we had to fight the nurses off the boys, and Heidi’s one regret is that she didn’t get a photo with them herself!!  I had to wipe the drool off Heidi’s cheek after they left! 😉

It was very special and so very thoughtful of them all to take the time to come support these girls.  They lifted their spirits and gave them something to remember.

I just wanted to tell everyone that these guys are not only great athletes, they are also men of quality, of compassion, and well spoken, too.  Which is surprising! Right?! I mean, aren’t these guys just supposed to be just “Jock’s”?  I know a common assumption is that professional athletes are all supposed to be self-serving and egotistical. And I suppose in many cases, it may be true. But, after meeting these two men, I was impressed. Nick even offered to come back by to visit again if we ever needed him, and we invited both of them to the next gathering in our back yard around the Jesus Barrel. Mia hopes to be Nick’s next baby-sitter, and the next time we have a party, Kyle said he would bring the team over. I warned him about the house rules about the hot-tub, and he said that was no problem. Anybody interested in attending the next party, let us know.  🙂 I’ll be taking bids for who gets to join the boys from ReAL in the hot tub at the next party…… all proceeds go to Mia. 🙂  Heidi’s not allowed in the hot-tub any more.  😉  jk.  But seriously…… these are good men.  And we thank them.

The only tense moment was when I asked Kyle, since he couldn’t kiss Mia due to her immune suppression, if perhaps I could get a kiss or hug instead??  I mean, c’mon?! SOMEONE in the family ought to score one off the RSL dread-locked ‘heart throb’!?!  And if Heidi was too shy to ask,….. I certainly am not!  I already asked, and finally received!, a hug from the new Head of Surgery, Dr. Gruber! (Who was part of Mia’s transplant), contrary to all predictions from the nursing staff- and much to their delight!  So, why not from Kyle??

Thanks John and Brook for making this happen. In Hoc

And I may have poured it on too much when I suggested Kyle get a feather or two put into his hair in support of Mia?  I showed him mine, but after I’d just asked for a hug or kiss, I think it might have put him over the edge?  Anyway,……..  c’est la vie!

So, I just have to comment on how wonderful it was for Kendra to meet Kyle, who she had written a paper on in school, and who was her soccer ‘idol’.  I took a picture when Kyle asked if he could give Kendra a kiss on the cheek.  You should have seen her smile!!!  well, I guess you will! (if I can figure out how to upload another picture! sorry, Brian! I’m horrible at this stuff!)

 

 

 

 

Bed time. After reading a little "Firewing".

It’s another day, and Mia is on the Bi-Pap machine, instead of the t-tube. Which is nice.  But it comes with it’s own set of ‘negatives’.  Like, try sticking your head out of the car window at 60 mph, and try to breath comfortably………. for 24 hours a day, days and days in a row??   It’s brutal.  But it’s air.  And without it, Mia can not support herself.  So, unless we have to replace the t-tube, she remains on the full face mask.  It’s exhausting, and she can’t talk and barely hear over the noise of the rushing air.

She so appreciates hearing from you all, as she surfs her website and reads all that she can.  She is one tough kid, as we all know. But she’s also a 12 year old ‘little’ girl. And she looks forward to a day when she can see all of you again.

For now, …… that is all.  I’m off to work for the day.  Thanks to my incredible staff and patients, for being tolerant and supportive.

I’m STILL the luckiest guy you know.

With love and Appreciation,

TBrick of THEMBricks

ps. Baking Soda. It’s what’s good for you.  or, your teeth. 😉

 

Truly Independence Day

Sleeping "Bella-B", after a long day without the tube! sportin the R,W,&B ribbons for the 4th!

And that it is…. The fireworks will be in Miss Bella’s honor tonight! For the past couple of days the docs have been doing whats called “Sprinting” with Mia. The Respirtory Therapist comes in and adjusts the machine to a setting where Mia and her lungs have to do all of the work. They let her breath on her own for about an hour and then the machine is turned back to support for few hours. This lets Mia exercise her lungs while having back-up support if needed. She didn’t suffer through the exercise program like most of us do at the gym, she didn’t even break a sweat.

Well, this morning during rounds, the docs concurred that it was time for Mia’s endotracheal tube (most definitely not her BF) to be removed. So… as you all know, the most recent post was published during the wee hours of this morning. That’s what happens when Tom decides to stay up here at night. He is cut off for the rest of the week because Krista said he has to focus at work. And…. he just took off for the Real Soccer Game (thanks JK for the tickets) with his new P.I.C.U BFF Jameson, the father of 14 yr old little girl up here. Fancy that…. Tom meeting new friends. Luv it. I really wanted you all to share in the happiness of the day before it comes to an end and I knew Tom would not get the chance.     So I write.

Tom rolled in at 7:30ish this morning and went straight to bed. I stayed home with Eli last night and before I left, I knew about the scheduled “sprint” for 4am. When I woke and saw the van in the driveway and Tom asleep in Eli’s bunk downstairs, I decided to give room 10 a call to see how Mia’s night had gone. Nicole, our nurse (and one of our fav’s) told me she had a great night and they were going to take the breathing tube out this morning. I also have to tell you that Nicole calls herself Mia’s “good luck charm nurse”. She was there caring for Mia the day we were told Mia was going to receive the gift of “life” and now here she is again caring for Mia the day she was given the gift of taking her own breath.  Dr Frank asked Mia is she wanted to wait for her parents to take the tube out or suprise them. She wanted to wait.  I called around 8:30am, Mia had gone back to sleep and I told Nicole I would let Tom sleep a bit longer and we would be up. Mia changed her mind!!!  It was 10:30am when she woke up, she remembered the earlier discussion with Dr Frank and decided she wanted it out NOW….. not caring if we were there or not (I don’t blame her).  Tom, Eli and I arrived just after they pulled the tube at 11am, we were welcomed with the biggest smile and a simple whisper “hi.” Her throat is sore and vocal cords will need some time to recover. While Tom and I snapped away with the camera’s, Eli had tears in his eyes, jumped into her bed and gave her a big fat “little brother” hug and kiss. All of us in the room 10, Docs and nurse Nicole cried.

Mia spent the day sitting in her rocking chair, looking at her email and looking for songs on her new itunes account that Quinn and Jesse set up for her birthday. Her Uncle David and Aunt Stacie brought up some new nail polish (pink, orange and light green… cute!!) Mia was able to whisper to us “pink on my fingers and green on my toes”.

That's some luv....

It’s a beautiful day here people…. and I am so blessed to be able to share it with all of you, our circle we call our friends and family.

Happy 4th

Heidi

 

Perspective….. such a gracious mentor and guide.

7 a.m. wake-up call!!

Hello Friends and Family,

Anyone else awake at 2:06 on our Nations Birthday? Probably the men and women over in Afghanistan?….. and me and the nurses in the P.I.C.U./C.I.C.U. up here!  and some of you, either busting your butts hard at work, or you’re up to no good at this hour! GO TO BED!!

Anyway, I posted a little video over at the Facebook page below:

https://www.facebook.com/pages/Love-and-Light-for-MiaBella-Brickey/215130495188514

I can’t load a video longer than about 10 seconds on this website, or a picture above 2 MB, therefore, I will be posting bigger things over there.

That will include photos from the incredible event last night at Marty and Nicki Kasteler’s house! It was a HUGE success, on many levels.  The kids had a blast. And the adults partied like kids! And some people even watched the 1964 movie “A Fistful of Dollars”! with a young Clint Eastwood.  A  pure classic. (Can you hear the whistling?…. The Good, The Bad, The Ugly!) http://www.youtube.com/watch?v=1a8goWjZGdo&feature=related

Last night, MiaBella played the part of The Good, and she made off with the Gold! The beautiful and generous people who came together 4 years ago to support Marty and Nicki have returned to wrap their loving arms around our family and MiaBella.  Just like the earlier dinner party at Egg’s in the City, in which so many people donated their time and resources, last night so much karma and energy came together……. and more than a fistful of dollars! They raised (get this….wait for the whistle!…..) $2,775.00!!! from a silent auction of donated and created items, and other donations!  Unbelievable! Add that to the nearly $16,000 raised at Egg’s, and Mia’s beginning to look like a fairly attractive dowry item, despite the obvious future liabilities!! 😉 No, but seriously….. We are blown away by everyone’s generosity and willingness to extend themselves.When I told Mia about it this morning, you should have seen her eyes! They opened so wide! and she just stared at me again.  It was awesome. 😉 I just can’t tell you how warm and good it feels to have your loving arms around our family.  To know how many people have extended themselves, both financially and personally with their time and effort. All for our MiaBella, and in support of our family. This is a testimony (yes,… I’m going to use that word) to the quality of people we have been blessed to come to know.  I do not know why we have been so fortunate, so blessed? But, I can sincerely say, that I don’t think anybody in the world can say that they have better friends, or that they know a higher quality of people, than I can say of what we have in all of you.  If you are reading this, then that includes you.  It shows that you care. And that you understand the value of ‘people’. The real and only Treasure in this life can be found in the hearts and minds and dreams of People.  It’s Love and Compassion.  And MiaBella, and our family, have been receiving epic dose quantities in the past month!  Profound. and Humbling.

It’s all about Perspective.  My advice?….. get you some!

cont. at 3:48 a.m., Juy 4th, 2011.

In quieter times, I sit and find myself shifting through emotions like a leaf or cork    traveling and bobbing through the eddies of a river. I don’t spend a lot of time thinking  about what a shitty ‘hand’ my daughter has been dealt. Don’t get me wrong! I do sometimes…. but it doesn’t help. It brings me down. It’s a serious Buzz Kill. Because, that perspective implies  several things which fall away quickly with a little reflection. Like the idea that the ‘hand’  given you is worse than anyone else’s. ???  Or, that you were deserving of something else.   Something ‘better'(pretentious git!). And maybe, even, that someone ELSE was somehow  ‘more deserving’ or worthy of your own misfortune, not you. ? right? well……. as I’ve said  before, and as I discussed with the nice nurse up here tonight, all you need to do is  remember to come spend some time up here in the I.C.U.,….. just take a walk down the  hall, and unless you have no ears or eyes to see, you should come to realize that it could  almost always be worse. And no one ever promised you a rose garden.  And even if they  did? How boring??  I like a variety in my garden! including some purty wild flowers!  The  things many people used to call Weeds!  I call ’em Perennials!

Four years ago, when Marty and Nicki found themselves fighting for their lives, I found it more than easy to ask for money.  It was a “no brainer” for me!  Marty and Nicki were two of the kindest, sweetest people I’d ever met! and the ‘goodness’ that exudes from them is thick like honey! And I’m a “B”ee!  So Swarm I did!  And when Marty expressed reticence in accepting help from complete strangers, I tried to understand him, but didn’t. And I had little tolerance for it.  I told him, “Let them help! It makes them feel good! It’s a beautiful thing! Everyone is rallying around this injustice, and coming to the aid of a fellow human being who needs help! Allow this beautiful and spontaneous outpouring of love ensue! It’s GOOD for the community. It’s good for us!”…….. and Marty, with much effort and help from his incredible wife and many friends, did accept and allow these strangers to help him. Many of those ‘stangers’ were You! The very same people who are reading this and coming to our aid now.  And You continue to impress and amaze me.

But now, the shoe is on the other foot.  And my folks taught and raised me to be self-sufficient. To be of service to others. Tis better to give than to receive. And “me do it”!  You know?….. so accepting help and such overwhelming assistance has been…… difficult. And so very humbling.  I apologize if I have not thanked you for your help. I am trying. We are all trying and we are all learning. I’m in some uncharted waters.

Last night, as we sat around the small kitchen table…. sharing chairs and laps and leaning on each other’s shoulders, we shared our feelings and thoughts, while the kids melted into each other falling asleep to some kid’s movie.  It felt so safe. Such a warm and loving home Marty and Nicki have built. And it was filled with beautiful, colorful people. People who value individuality and self-expression, and often shun the acceptance and approval of the greater society, and yet, you all come together without question or hesitation when a friend of a friend is in need. I love your tattooed, stretched, gauged, and pierced assess!! Everyone one of you!…… well, except, there is that one tattooed butt I don’t really like,… how could you? …. it’s gross!!….. but there’s only one! so, no harm, no foul.  ok. just joking. too early.

So, I don’t know if you’ll ever really understand?…… until or unless you’ve logged some time up here, in some I.C.U., or anywhere that you find angels in earloop face masks tending the sick, the torn, the children and parents with lost dreams and altered futures. But not all dreams are lost. They just change, I guess. I’m trying to figure that out now….. and foresee a difficult challenge ahead.  Regardless, either you change…… or you die. I swear it’s true. At least, it feels like that.  Anyway, I just hope I remember some of what I’ve learned. I’d like to remember it all! But I’m not Rain Man, and too often I seem to forget the very Miracle of my only daughters existence! But then I remember about the other kids….. and I see that silent spector who wanders these halls.  He’s called Perspective. Not everyone see’s him. But those that do won’t soon forget the lessons he hands out. You only need to open your eyes. And mine have been pried wide open.

In my office, we’ve been saying, “It’s all about the Love!”  I even had it printed on a version of my business cards.  I wanted to print it on my toothbrushes, just after, “Floss yer Head Off!”, but there wasn’t room on the handle.  But I swear to you all, if we can all learn something from what our MiaBella is going through, if through reading these random wanderings of my sleep deprived and sometimes desperate mind, then I can feel better about taking all that you are giving. And I can believe that maybe everything that Mia and our family has been through will be of value and meaningful. I acknowledge you all for your hand in this experience and would welcome the opportunity to assist any of you or someone you love should you ever need me. Because, it is true. It IS all about the Love!

Thank you for your compassion and empathy, all for a little girl who needed you, and a father and mother and brother who don’t know what we would have done without you………… or her. At least we’re all going to have her around for a little while longer?! Like, hopefully, couple of more decades or more!!

carpe diem and Namaste to all of you!

 

One Happy DAd on July 4th, 2011, 5:25 a.m.

ps. I’m telling you….. there’s NOTHing like a neutralized mouth. Just ask Mia.  ……but wait until the tube’s out. She can’t talk right now, dummy. 😉

Mia's Birthday Continues!!!……

Maya and Mia. Myocarditis Angels!!! and new Friends!

Thanks to all of you crazy, wonderful, beautiful people!!!………..

We couldn’t get through all the cards and kind gifts yesterday!  Mia tried hard! But, her little eyes just couldn’t stay open. It reminded me of when I go to Bombay House, and my appetite is so much bigger than my stomach! and I just want to keep eating.  THus, the pudge and family nickname, B.F.D.  But that’s another story.

Anyway, Mia is sleeping now…… but I wanted to tell everyone what a GREAT DAY she had yesterday!!!  THANK YOU ALL!!! so much.  The folks in Minnesota, the friends in Soo Bahk all over the world, the friends here in good old Slick Lake City, your cards and well-wishes on-line filled her day with Love.

She DID get her Mac Air laptop………. spoiled rotten CICU patient that she is!! 😉  And she loves to read your comments here on her website.  We are having her write her comments in a journal, and I’ll share some of them some day.

Till then, I just wanted to say, Thank you. And so does she.  We are making excellent progress. And, with continued luck, blessings, and hard work, she will be off the dreaded ‘tube’ soon!  Maybe by the end of next week? foregoing any setbacks.  You’ll be the First to know!

So, as Paul Cardall plays the tunes in the room, my beautiful daughter sleeps.  New heart, new future, new dreams.  We are so lucky. We are so Blessed.

tbrick of thembricks

ps. send your prayers to a new friend, Hanah Hornbeck, down in Arizona……. who is having some rejection problems from her own heart transplant.  She is back in the hospital. And we are praying for her. Hanah is another Angel who had Giant Cell Myocarditis and received her new heart a year or so ago. We know she can do it!!!

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