The road and the beach; our vacation beginning.

We were so ready to go on vacation.

So.Ready.

We had driven to Vegas with our kids a couple summers before for the Chromosome 18 conference, so we were confident that we could at least make it that far in the car without major incident.

These headphones played a gigantic role.  They were lovely, and Deak did not figure out how to take them off (until the way home). Therefore, Blair and I were able to listen to all the 90's on 9 (best satellite station ever) we wanted.

We stayed the night in Summerlin, outside of Vegas (didn't want to do the smoky strip with a recovering Deak) and relaxed. We actually wished we wouldn't have made the reservation and just driven to Anaheim. It was that easy.

(Note to self: there is always a calm period before the storm).

None the less, it was a relaxing evening, Deak slept in his porta-crib inside the bathroom, Blair and Ab saw the new Wimpy Kid movie and I watched American Idol.

We got to Anaheim the next afternoon, after making a pit stop in Baker, which Blair and Ab quite aptly designated "Radiator Springs."

A few minutes after that pit stop, I re-learned a lesson that I apparently cannot get enough of: when to shut my mouth.

Abby mentioned, "Hey mom. All the people in Radiator Springs did not look alike."

Uh, ya.  Blair and I turned the clueless look onto each other, hoping we had not raised a child from white-bread Utah with no sense of culture.

"Ab, what do you mean?" I asked cautiously, not knowing if attempting to understand this was a good idea.

"Well, remember when we watched that one show with all those women and you told me everyone looks the same in California. They don't here."

Crap. Yep, I did remember. Yep, that show we were watching may or may not have been "The Real Housewives of Orange County." Yep, I most definitely made that comment in response to Abby's unlimited questioning as to why the women on the show all looked the same. 

(Don't judge, I was trying to figure out what Tamara and the new chick were fighting about.)

Lesson learned. Again. At least I was able to clarify which areas of California I was referring to:)

Upon arrival, we immediately noticed that although our hotel was very nice, our room was very small. AKA Deak could not fit inside the bathroom. 

This was not good.

We debated actually buying two rooms, even though we don't have that kind of money, because we knew this was going to be rough.  Dave Ramsey got the best of us, and we chose to tough it out; and tough it out we did.

(I'll just clearly say at this point, we will never, I repeat never, travel again without saving enough money for at least a one room suite. )

Deak needs his space (and maybe so do I).

At least we had a balcony...a pretty awesome one.
We got to watch the Disney fireworks every single night.

We unpacked, relaxed for a few seconds, and headed to Huntington Beach to meet Jane and Jake for dinner. We got there early enough to let the kids play around for a while. 

 My favorite beach picture, not taken with fancy camera, just my iphone.

Deak, bless his heart, was still weaning from Prednisone, and having a difficult time with any new environment or transition.  The first hour at the beach, he cried.  After that hour of assimilation, he loved it.  He was even well-behaved at dinner. 

We ate over the ocean at Ruby's on the Pier and Abby was in Heaven.  I think she literally asked to go back out into the ocean (clothed) at least 55 times.  Coming from our pseudo-winter, the California temperatures felt like 80 degrees (even though they were more like 45 or 50 that night).

Love the beach, wish we could have had more time there.  I am happy we were able to at least make an appearance and visit for a few minutes with friends that we haven't seen in a long time.

It was a great beginning.

He's back.

Have I mentioned lately how much in love I am with my son?

The prednisone and eye incident (to be discussed in further detail with the Disney adventure) are now in full recovery mode, and his sweet smile and hoppity hops have returned to my life.

I have missed him so much.

Yesterday, while working on some race stuff on the computer, Deak played with Buzz in the other room.  While typing I heard the most lovely little voice saying, "MaMa. MaMa. MaMa."

In standard form, I rushed in like Mr. Belvedere, tears welling, and responded, "Deak! Do you want me? Do you want MaMa?"

He smiled and said, "Mama. Mama, I la ya."

My heart swelled so much I thought it would break open and release happy singing birds.

I love him.

I also felt really guilty after all his sweetness for quite literally telling Blair to "Take Deak before I beat him" after Day #6 of crappy hotel room sleep and Day#3 of crying, up all night stuff.

Highs and lows. This kid can bring his share of both. 

But, man those lows, rough as they are at the time, are more than worth the highs this awesome kid and his ring chromosome can bring to my day.

The Run.

Since beginning this Run for Hope journey in January, I've tried to limit those anxiety-producing thoughts.  In fact, due to my extremely insane Type-A personality, I even gave myself a designated time period.

...After Disneyland...

Well, that's now.

And, since Disney was wonderful and full of adventures and challenges all its' own (details to come later), I've now entered my self-induced Run for Hope crunch time.

Check this out, it will brighten your day:)

Prednisone

Oh, my Deak.

I love him...love him with my whole soul.

But, the boy is killing me.

We are entering our third week of prednisone to treat Deak's recent unexpected onset of asthma; anyone having had experience either taking or having a child take this drug understands the importance and miracles performed through it.

But, the side effects are terrible.

Deak took prednisone three different times for multiple weeks during his first year of life. This medication, blessed doctors and divine intervention kept his life here.  I didn't fully understand or recognize the effects this medication had on Deak's behavior and personality until the second round was prescribed and administered. 

It changes my boy.

All inhibitions are released and his imminent demands are painstakingly shriek-like.  He does not understand why he cannot control his mood and temper, nor can I really explain it to him. He is so, so, so hungry and will scream at the mere sight of food within edible distance. He has been cooped up inside the house with the exception of a couple of outings, because his immune system is severely suppressed due to the medication. 

He is quarantined, hungry, and bearing a mood that resembles a nine month pregnant and slightly overdue woman.

It is miserable.

My heart hurts for him. It isn't fair he has to go through this.  He has to go through so much - so.much.  I just want enough to be enough for him.

Selfishly, I've looked back over the first couple years of Deak's life, when things were really rough.  Back when breathing was a daily battle and communication consisted only of screaming. I've wondered, even aloud, "How in the hell did I survive it all?"

The pressure to predict the future, the questions of "What if?" and "What will happen next?", the onslaught of weekly therapies, the constant appointment scheduling and transporting.

Plus work and another child who needed her mama.

Really, was that person even me?

I've often promised myself that I would learn...

I would learn to not take any day of health and joy for granted with my boy.

But, I've not completely succeeded.

I do consciously try to be aware, but we've coasted this past year or so with him. We've seen physical milestones met, illnesses quickly overcome and receptive communication skills increase to such a degree, that relatively speaking, things had gotten so much easier.

And, I took it for granted.

I did.

Lesson learned.

I feel it all again; the worry, the pain, the constant prayer for patience and perseverance, the pathetic eyes gazes from passersby who see me struggling with a screaming child and feel happy my plight is not theirs.

I feel it all.

I want my Deak back.

I want to go to Disneyland in a couple of days and trust his lungs will breathe well enough to withstand the need for nebulizer treatments in the nurses lounge.  I did that last time (four years ago), and I wanted to keep this trip treatment free.

I want so badly for Deak to have fun and smile those smiles and squeal with delight.

I want as close to normal as we could get, and I want a break from this crazy reality that is our life.

That being said, I would not trade one second of screaming starving Deak, for a Deak that never made it into my life.  The comparison is not even close to fathomable.

And, therein lies my purpose.

A purpose that I whole-heartily embrace;  that through this experience raising this beautiful boy, I will get momentary glimpses of understanding as to how it will feel the day I see him running, jumping and talking in perfect form.

Just that one visual can calm the waves of anxiety-inducing thoughts and give me the strength needed to push forward.

And, I know everything will be okay.

Prednisone, Disneyland and all.

A little help...

Well, actually...I could use more than a "little" help depending on who you ask:)

Anyway, if you are interested and have a few minutes to share, check out this link to Deak's Run for Hope Blog...

As always, you are awesome and we are so incredibly thankful.

Click here

Red Letter Day

Yesterday was crazy, as if any day isn't.
Deak had kind of a nightmare experience with the sedation Friday during his MRI, and for some unknown reason, it has triggered an asthma episode reminiscent of his first year of life. 
I stopped by the mailbox on the way to pick up Deak from the bus and noticed a letter from my insurance company. I assumed it was a letter telling me something I didn't want to know, like I needed to pay extra money or they denied me for life. You know, simple catastrophes that have become somewhat commonplace in my day to day life.  I opened it and read that they had authorized something, but I carelessly disbelieved it. I don't get letters...EVER...saying my insurance will authorize anything.
I stuck the letter in my purse, grabbed Deak and rushed around for the next couple of hours to cheerleading with Ab and the pediatrician with Deak.
(A visit which I am still grieving over due his retirement announcement...I truly can't bear to think of what I will do when he is gone...but, it is deserved of an entry of its' own when I can mumble through it without losing control of my emotions).
Deak was placed on prednisone (yippee) and given x-rays to rule out aspiration and pneumonia. They were clear, thankfully and we are hopeful Deak will recover quickly. (Although I'm not sure I'll survive a five day prednisone course with this child. He already eats me out of house and home, and this morning he was climbing all over the couches by the coffee tables, laughing hysterically and acting like a hyperactive monkey.)

Needless to say, I didn't think much of it until midnight or so last night when I mentioned to Blair, "Hey, I think I got a letter from the insurance saying they'll cover Deak's growth hormone."  We kind of laughed, certain it was some sort of mix up.

Well, this morning, I opened my purse in my office and remembered the letter. I decided to call the customer service line and verify the accuracy.

Yep, it's covered.
What in the Hell?
I have fought the beastly core of medical insurance agencies for three years; I'm estimating I've been through 14 or so appeals. I've hand-written personal letters, changed pharmaceutical carriers, filled out mountains of paperwork, and prayed. 
I. am. in. shock.

We obviously will have to pay a portion of this medication each month, 10%. Which, probably doesn't sound like a lot until you discover this medication has the capability of costing over $1500/month. The money will work itself out; I am just cautiously grateful for this sudden change of heart.

This medication has changed Deakon's quality of life.  It is not about height, it's about muscle strength and myelin production in his brain. It has truly been amazing, in a mixed blessing kind of a way, because giving your child a daily shot is never fun.

But, man...with the year or two we've had...we'll take this good news and we will celebrate.

Read here, here and here to learn a little more about our story with Growth Hormone.

Hooray for my red letter day!

Cheerios.

I love that term.

Thanks Sue Sylvester, you are awesome.

Abby loves, loves, loves cheerleading.

Honestly, in the beginning, I thought that we may only be living inside this world of insanity a year or two....um...nope, we are stuck.  Ab has declared very vibrantly and on several occasions that she will be cheering until she enters Medical School.

(I need a Sugar Daddy, but Blair says I can't have one.)

Abby and her team, Cheerz Silver, have competed in four competitions so far this season. They have placed in the top two (First once, Second twice) in 3 of them.  The only reason they didn't place within the top two in the first competition is because they did a move subjectively deemed illegal due to it's difficulty.

They are really fantastic and pretty amazing to watch.

These little bodies, especially Abby's, hold no fear.  Abby has improved by leaps and bounds this year.  She is consistently and easily completing a round off and five back handsprings on the floor, and is in the process of learning a standing tuck. 

Yep, she is eight.

Pretty amazing, right?
(Picture taken mid-yell:)

Cheerz competed in a National Competition last weekend in Salt Lake City.  It is an awesome venue, but the top two teams are required to compete twice in a "Cheer Off," which is a little intense for little people to wrap their heads around.  This competition infallibly pisses Abby off each year.  This year, they did fantastic and took second place...although the judges had thrown their arms in the air and had to take 10 minutes to announce the winner because it was so close. 

The best part of this competition was seeing our friend (and her mom), Emily. 

Emily and Abby became friends while we attended the Chromosome 18 Conference in Vegas a couple summers ago.  When I told Abby that Emily was competing in the special needs category, she paused and genuinely asked, "Why? I didn't know Emily had any special needs."

That comment was the highlight of my month.

If only all eyes were as pure.

We are heading to Anaheim in a few weeks and are excited to share Abby's first out-of-state National Cheerleading Competition with a few extra days at Disney.  This vacation has impeccable timing and has truly been tirelessly worked for. We are grateful to be able to take some time to enjoy the good stuff.

And that good stuff includes watching Abby enjoy this path she has chosen...