Disney Dreaming.

Wow.

How do I sum up this experience?

Blair and I both discussed how this Disney trip was full of both extremes; really, really tough lows and amazing highs-the kind you wait your whole life to have.

I won't sugar coat it, the first few hours at Disney Blair and I looked at each other and wondered if we made a mistake by bringing Deak.  He was a little freaked out by the crowds and rides and noise; he was also still on Prednisone, which I think made a huge impact on his ability to control his moods. Honestly though, can you imagine going to Disney with no understanding of what to expect? We threw him on Peter Pan, hoping he would love it (which he did eventually); I think he thought we had lost our minds.

(Okay, to his credit, I had just accidentally clocked him with my camera in this one...)

After a few experiences of screaming (yes, he screamed the ENTIRE way through "It's a Small World." We received many glares of distaste from parents who obviously know what it's like to be in our shoes), I truthfully felt pretty defeated. Blair and I decided we would enjoy the day for Abby, whether Deak chose to scream or not.

Then, we rode Nemo.

He loved Nemo.

We all loved Nemo.

I cried.

I watched his mind begin to process this experience: "We get in line for a minute, sit with Mom, Dad and Abby, ride around in something weird, see fun things and sing fun songs. Okay, I think I can like this..."

It was beautiful.

 After the Nemo experience, we were re-energized and excited to show Deak all that Disney had to offer him. He loved it. 

He did not always love the waiting (which was cut very shortly due to the ability pass that Disney offers - it is amazing - and the absolute ONLY way Deak could enjoy himself), and he did not always love the stopping of the stroller for crowds, but he loved the rides and LOVED the characters.

Deak shared his pretzels with Tinkerbell, I think he was smitten.

Deak wanted to touch all the characters he saw.  He'd squeeze his little shoulders high into the air, smash his neck down, giggle and smile with his whole face.  He'd point to the characters when we got close and attempt to climb out of our arms and into theirs'. It was so fun to watch.

The Disney Junior Show was by far Deak's favorite. He was mesmerized the entire time. He clapped, yelled with the kids and hopped around, attempting to touch the MC.

 Even though both of these pictures depict otherwise, Deak loved Buzz and Toy Story 3. He loved Buzz so much, he grabbed the gun from my hand and began shooting the targets himself.
Yep, I cried. Again.

Deak's not loving the packaged life...

Abby.

Even as I type this, I am in tears.

I am just so dang proud to be her mom.

She was amazing.  She was sweet and young enough to want to visit Tinkerbell and Rapunzel, yet wise and mature enough to understand that Deak and his imminent demands sometimes had to come first.

She did not complain once.

Not once.

She was kind and gracious and thankful and energetic.

She was genuinely happy when she saw her brother happy.

She is just so awesome.

Um yes, I waited in this line over an hour and a half...but, considering all things, it wasn't terrible.  Blair, Ab and Deak used Deak's golden ticket to go on about 10 rides in FantasyLand during the interim.

Abby was tall enough and brave enough to go on all the cool rides with Blair and I this trip.  Thanks to Blair's parents (Marilyn and Craig, without whom we would not have survived the trip), Blair and I were able to enjoy an afternoon alone with Ab.  We went on Big Thunder Mountain, Matterhorn, Space Mountain and the Tower of Terror (she went twice:).  After each ride, she'd promptly exclaim with exuberant joy, "THAT ONE IS MY FAVORITE! I LOVE THAT RIDE!" 

(Outside the Tower of Terror)

As we got on Space Mountain together, I turned to Abby with tears (a common thing for me) and told her about the times I came to Disneyland as a little girl, growing up in California.  I told her how Space Mountain was my favorite ride-my absolute favorite. I looked into her stunning crystal blue eyes and said, "This is very, very special for me. It makes me so happy to have you with me enjoying something I loved as a little girl."

Full circle. Love those moments.

Blair's parents came with us, and they were amazing.  I don't know how we could travel to a place like Disney with Deak, without help.  They were so willing to help and follow as we did all the bossing around and leading. Abby and Deak loved having them there, and so did we. 

We were especially grateful for their help while Deak and Blair made an emergency visit to the local Orange County Children's Hospital on Sunday morning.  I was extremely nervous, as Deak had been up all night, agitated and in some sort of pain.  We had gone to dinner the night before with my long, long time friend, Veronica (we grew up in the ghetto together) and her boyfriend, Ramon.  Deak cried and cried and began rubbing his eye profusely...to the point where Blair actually left dinner early and took Deak back to the hotel to calm down.  By Sunday morning, his eye was swollen shut, and if opened slightly, the entire eyeball was red and bloodshot.

I knew it wasn't pink eye, I've seen that 789 times working in Elementary Schools, and I became worried. My gut told me he needed to be seen.  Unfortunately, he needed to be seen right when Abby was competing (her second performance) for a National Title.  I knew Abby needed me, and trusted Blair could handle the visit (the first I've not been to since Deak has been born, crazy, I know.)  After waiting forever, the doctor diagnosed Deak with a severe, severe corneal abrasion, meaning he had deeply scratch his cornea. The doctor said these abrasions are not just painful, they are extremely, extremely painful; and it did not surprise him that he screamed the entire night.  Thankfully, the diagnosis did not require an admit to the floor, and Blair literally ran to Abby's side as they announced awards for her division.

It was traumatic, and inside I was a mess.  I was stuck between fear for my son, and heartbreak that Blair didn't get to watch Abby.  I was torn between feelings of worry and selfish jealousy; jealousy of all the other families who get to go to Disneyland and not have to worry about hospital visits. That being said, I was immensely grateful that Deakon's condition could be treated and he could attempt to enjoy one more day at Disney with us.

And enjoy, he did.

We were able, thanks to Marilyn and Craig, enjoy a fun morning eating breakfast at Goofy's Kitchen.  Deak's favorite, by far, was Pluto, and Abby loved the Genie. 

We spent the entire last day at Disney, about 12 hours, and assumed the kids would be worn out enough to sleep through the night.  We had plans to get up early and drive the 11 hours home straight through; I needed to be back for work early Wednesday morning.

Well, thanks to Deak and his yucky painful eye, we were not-so-kindly awakened by his incessant screaming at 2:30 am. He became inconsolable. So, with everyone up in our room (and most likely our floor, sorry people), we decided to pack up and take off. The second Deak was buckled into his car seat, he began repeatedly signing, "Bye Bye" and "More".  Essentially telling us, "Yep. This is what I wanted. Take me home."

So, we did.

Thanks to a few energy drinks, while the rest of us slept, Blair drove straight through. We made it home by 3:00 in the afternoon.  He was pretty proud of the time we made.

Nothing like returning to your own bed and pillow after a vacation. 

We had such a wonderful, wonderful time.

Highs and lows, yes. But, as I overly-state on this blog, I wouldn't trade a thing. My lows bring me highs that most of this world cannot comprehend.

And, for that, I am grateful.

(And, yep, I am going to leave out the story where due to an unexpected separation, I ended up carrying my 40 lb Deak around California Disney 2x. I'll stick with the gratitude:)

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