.hawaii.

**CAUTION: Photo dump ahead!!**

In the beginning of July we were blessed with the opportunity to go to Hawaii with the Dietzen family. This is no small feat! With 2 parents, 5 children, 1 "adopted child" who lives in Israel, 2 spouses and 2 grandchildren, we were quite the crew!

This year marked the 30th wedding anniversary for Scott and Mishal {congratulations!!} and ever since they went on their honeymoon to Kauai they said that they would come back someday with their entire family.

So this year was the year they decided to take us all along on a WONDERFUL and AMAZING vacation to Kauai!

 With the extremely mild summers (if you can even call it that) we get here in the Pacific Northwest, we were ready and willing to do whatever it took to get us to some warmth and sunshine!

Not even the ear infection/cold that Parker got the day before we left was going to put a damper on this trip. Below is a picture of the poor little guy trying to sleep before we left...he was so stuffed up he slept elevated on his little pillow! But no worries, we got him some antibiotics and he was good to go!

Our flight left bright and early and between car seats, golf clubs, strollers, luggage and diaper bags, we looked like we took half our house with us to Hawaii. We were definitley "those" people you see walking through the airport!

Here is Parker ready to take off for the long flight to Hawaii!

We spent most of our days relaxing, working out, playing tennis, laying by the pool, laying by the ocean, etc.

Ya know, living the good life :)

Parker even got a new little floaty for the water that we were testing out one morning at breakfast!

There was a little kiddy alcove at the beach. It was PERFECT for the kids because the water was calm and shallow enough that they could swim and walk around without waves crashing in.

The first day we went to a different beach with big waves and Parker was NOT having it! The waves were too loud and I think it scared him a lot.

He definitley didn't love the water at first, but with a lot of patience and some practice, he was a fan by the end of the week.

I think he is more of a pool guy than a beach goer. Same as me, like Mother, like son :)

 Nick and I made sure that Parker was covered up and lathered up in sunscreen but I think we may have forgotten about ourselves!

Both of us ended up with some ridiculous sunburns on our shoulders, and Nick's even blistered pretty bad.

Guess we learned out lesson the hard way! Oops!

My little man all covered up!

JD, Ang and Mason enjoying the water. Mason was so cute and loved playing in the water and in the sand!

 See, Parker liked the water eventually! Hopefully we didn't ruin the vacation of the people around us who had to witness his meltdown.

This was taken on the 4th of July, after our first full day out at the beach. We were all kind of tuckered out and went to bed before any fireworks! 

Guess life changes when you have kids! 

One of the days we drove up to Wailea Falls and a group of them hiked down to the bottom and swam in the base of the waterfall. I stayed with Parker while he was sleeping, but they all said it was one of the most amazing things they have ever done!

So fun!

One of the days us girls went to the Hyatt for a "spa day".

This day was A.M.A.Z.I.N.G.

I felt like a celebrity! We spent the day lounging by our private pool, enjoying our robes and sandals, fruit infused water and being totally and completely pampered.

I enjoyed a relaxation massage in an outdoor cabana.

Amazing.

This was the view we walked down after our girls spa day at the Hyatt.

Another morning we drove to the north side of the Island and found a deserted beach that a few war movies were filmed at. It had the most amazing clear blue water and miles of sand.

It was so fun because the water level got deep really fast so you could basically just dive straight into a wave and it was deep enough. We spent a lot of time in the water just playing around.

Parker decided to take a snooze. What better way to nap than in Hawaii on the beach?!?

                                                   My HOT hubby in the water. Yes, he is taken! :)

On one of our last nights we went to a Luau. It was a beautiful show and Parker LOVED it. There were tons of lights and music and dancing and he literally talked the entire time!

It was way past his bedtime, but I just stood off to the side with him and he was dancing and talking and having the best time. One of my favorite memories from the trip! I just love this little guy to pieces!!

Parker with Auntie Lindsay before the Luau

                                                                   Husband and Wife.

                                                          Cute diaper bag you got there Nick :)

Momma and baby.

One of my favorite pictures of him. His eyes look SO blue. Just love him!

Dietzen family picture. SO blessed to have married into such an amazing family.

Awesome. Glad my husband thinks so highly of me ;) 

Parker kept finding this little grasshopper made out of palm trees. Every meal he would end up with it somehow. He sure loved that thing, and I just love this picture. Caught red handed!



Overall it was just a wonderful trip. We truly enjoyed every minute and feel so blessed to have had the opportunity to do this. Between coordinating schedules, finances, school, work, etc. we were lucky to be able to have everyone in one place at one time and I think we all were very aware of how special it was.

If you are every planning a trip to the Hawaiian Islands, I seriously suggest going to Kauai. It had a much more "local" feel to it and wasn't as much of a tourist location as many of the other islands.

What is your favorite summer trip?

.advocate.

Advocate.

It's a word that both excites me and haunts me all at the same time.

I think it is every parents desire and mission to be their childs advocate. To help give them the correct resources, life skills, and options to live a full life.

And with each new stage of life, our advocacy changes for our children. While they are young, we teach them to talk, to walk, to communicate what they want and need so we can meet their basic needs as a foundation.

When they are in elementary school, it is our job to teach them independence, going outside of their comfort zone. To step in and interject when they need our assistance, but teach them that they can do it on their own.

In high school, it changes to allowing them to learn the lessons the hard way, but always being there to support them. And in college, it's to be there as a sounding board as our children embark on a journey of their own.

Obviously, there is much more that each phase of life entails, but the basics of being an advocate for our children is to be their voice when they are unable to, and also to teach them to be their own voice when they didn't know they could otherwise.

It's a whole new world when you throw special needs into the picture.

No longer are you focused on making sure you teach them all of the "age appropriate" things, but you are focused on them learning basic life skills that seem innate to "normal" kids.

Since Parker was diagnosed with Joubert Syndrome, we were thrown into medical land, where everyone speaks in "medical language". Sometimes I leave the hospital with my eyes glazed over because the information thrown at me is so over my head I cannot even begin to wrap my head around what they are saying.

It's taken me a while to finally understand everything they mean. To separate the emotional aspects from the reality, as well as weed through all of the suggested interventions, therapies, appointments, medications to figure out what is right for Parker. 

We are lucky enough to receive services from an early intervention program. They provide Parker with Physical Therapy 1 time a week and Education Therapy 1 time every other week. The physical therapy is to help with his low muscle tone and help him with his fine and gross motor skills as well as meeting his milstones. The education therapy is to help teach us how to interact and teach Parker in our everyday lives.

The BIG question that I struggle with is....

ARE WE DOING ENOUGH?

Are we advocating ENOUGH on his behalf?

Are we tapping into ALL of the resources available to help aid him to live a relatively normal life?

Should I be fighting for more services? Spending more time at home working with him?

Am I being the advocate that Parker NEEDS me to be?

I dunno.....

And that's what haunts me.

God gave me Parker as a gift, a blessing, far beyond anything I could have every wanted or deserved and it is my job to make sure he has the best resources available.

I am still trying to figure that out, and I think it will be a continual process. As his needs change, so will the resources.

My friend shared a quote with me the other day:

"Be the best mom your child needs"

I really think that fits perfectly in this situation. And I will continue to sort through what that means for Parker and try my hardest to advocate on his behalf when I can.

.organics.

As Parker gets older and is eating more "big people food", it has caused me to be a little more conscious about WHAT we are eating, and what is IN the items we are eating.

I can't get away with eating cookie dough or having a coffee for dinner anymore...bummer :)

So while I was on the plane flying to a friend's wedding, I was browsing through a Parents magazine that had amazing tips for grocery shopping. They gave advice as to what items are worth the splurge in the grocery store and what items you can save on.

Coming from the wife of an accountant, this information was money!

{pun intended}

What I found most valuable was the list for the "Clean 15" and the "Dirty Dozen".

Clean 15

{Generally Low in Pesticide Residues}

-Onions

-Corn

-Pineapples

-Avocados

-Asparagus

-Sweet Peas

-Mangoes

-Eggplant

-Domestic Canteloupe

-Kiwi

-Cabbage

-Watermelon

-Sweet Potatoes

-Grapefruit

-Mushrooms

Dirty Dozen

{Consider Buying Organic}

-Apples

-Celery

-Strawberries

-Peaches

-Spinach

-Imported Nectarines

-Imported Grapes

-Sweet Bell Peppers

-Potatoes

-Blueberries

-Lettuce

-Kale/Collard Greens

I will be taking this list with me to the grocery store!

Simple and practical.

Happy Shopping!

.huge milestone.

Because I love this smiling face below so much

 {AND}

and I can't get enough of his cute new haircut...I have some news to share!

Parker said both "mama" and "dada" last night!

He has been a talker since he was born and has had full on conversations with us in Parker baba language for a while now, but nothing sounding even close to mama or dada.

But yesterday HE DID IT!

At first I thought I was making it up...but then I heard it again, and again, and again! I kept having to ask Nick if he heard it so that I made sure it was real!

This little guy is growing up!

These milestones are so huge because some kids with Joubert Syndrome are totally non verbal, and most are pretty delayed in their speech.

To hear Parker continuing to talk and to be saying forms of words and vowels is HUGE!

I was grinning from ear to ear last night. He seriously amazes me everyday. There are so many odds stacked against him, but he is continuing to defy them. And I love being able to experience these huge moments with him.

Thought I would brag on my little guy for a second. :)

We love you Parker and are SOOOO proud of YOU!

.the unexpected journey.

For a while now, I have been trying to think of a name for the blog. For a few words that would encompass what I am trying to convey with each post. Something that would directly relate to our lives and what we are walking through at every new season.....

And then it came to me.

{THE UNEXPECTED JOURNEY}

It explains exactly what we are going through.

I mean really, this could have related to our lives way before Parker was born, as God always has different plans for your life than we imagine. But it specifially pertains to walking through the unexpected journey of a child with special needs. With a child diagnosed with a lifelong condition.

In college, I took a Communication Disorders class as an elective. It was a class that dealt with a lot of different conditions and the different ways they are able to communicate and how speech therapy directly relates to that.

I remember being kind of freaked out by the class. How I COULDN'T IMAGINE what it would be like to have a child with special needs. It was so terrifying to me. So I just kept telling myself....

{It won't happen to me}

Oh those words.

Those words are what everyone thinks when it comes to something difficult or uncomfortable or abnormal. But guess what?

It does happen. And it did happen to me.

But guess what?

It has been the biggest blessing I could have ever imagined or hoped for.

It is the Unexpected Journey we never imagined, but the most incredible journey we have ever been on.

The coolest part about this whole journey, is that, although I never thought I would be able to survive after the doctor told me something was wrong with my child, we have celebrated more than ever and learned to love in a whole new way.

I was talking to an old friend the other day, and although she has faced unbearable heartache in her own life, she shared with me something someone told her after her brother passed. She said:

"I'm almost jealous of you in a way. I am jealous that you get to know a part of God that I will never get to know. A part of God that you can only discover after walking through something like this"

And that is something I have allowed to marinate in my mind for a while.

We are so lucky.

Lucky to discover Jesus in a whole new way. And that God is using our AMAZING and beautiful son as the vehicle for us to discover that.

Blessed. simply blessed.

But to be honest, I do not always feel so lucky. When we are at the hospital getting and MRI or checking to make sure his organs are healthy. I dont feel lucky. I feel robbed. Robbed that my son has to overcome all these obstacles. Robbed that we live in a fallen world where this happens to real people.

But then I am forced to fully rely on the Lord and TRUST.

And then I get the call from the Doctor that everything is healthy. You cannot imagine the amount joy and celebration that we feel. That the goodness of God is overflowing onto us.

And so goes the day to day of our life on this Unexpected Journey.

We never know what the future holds or how our plans will workout but the journey, the day to day living is what life is all about.

And we are lucky enough to travel this road together, with our little man, and our loving Savior.

.fathers day.

I could go on and on about the the blessing of my dad in my life, the blessing of my Father in Law, the blessing of Nick as the father of Parker and the blessing of the relationship I have with my Heavenly Father, but its too overwhelming for me to even try to put it in words. When it comes to my family, I don't think I could have been more blessed with the family I was raised in as well as the one I married into. Especially over the last year as we have dealt with Parker's health and experience parenthood for ourselves, I now understand a little more of God's love towards us as I realize how much our dad's sacrificed for us, all the while loving us unconditionally.

For Father's day I decided to do a little photoshoot of Parker to document him at this stage, as well as him sitting up. Turned out to be quite the production and everytime I would sit him up, he would start hysterically laughing and fall over :) So I only got a few of him sitting up but the rest of them are pretty cute. He also wouldnt look at the camera because he would only look at me...so he is looking up or to the side in most of the pictures :)

Apparently being a model is hard work! Parker was so tired afterwards he fell asleep playing :)

Happy Father's Day!

.i'm back!.

Miss me?!?! It's been a LONG time since I have blogged, and am just happy to have survived a crazy last month and a half at work! April and May were so busy for me, that the blog took a backseat and I was just full force ahead trying to make it through the fiscal year end on the account I work on. and we did it. we made it through! wooo!!! :)

Besides work, The cute little guy in the picture below has been keeping me plenty busy! This picture was taken at the doctors office where we found out he had a double ear infection and sinus infection....poor kiddo was SO sick :( But he is continuing to improve and is an AMAZING little boy! He amazes us daily and is doing so well sitting independently now. I get tears in my eyes just thinking about how far he has come. Little miracle that kid is. We love our little Parker man.

His first birthday is coming up and I am busy starting to plan his birthday party. I have the theme nailed down, but haven't really done anything else! Oops! Hopefully next week :)

With his birthday coming up I am starting to get in a reflective mood and tear up everytime I think about the journey we have been on this last year. Happiest and saddest moments of my life have happened in the last year and I feel like the most blessed person in the world to have the miracle of Parker in my life and the greatest husband to walk through it all with me. God has lavished blessings on us tremendously as we have faced adversity.

I read this blog this morning from another family affected by Joubert Syndrome. I was in tears thinking of how I couldn't put it in words better than Sue did about the blessing of our children in our lives. Seriously take a minute to read this beautiful post on their son Marcus. So beautifully written.

http://mrssuelee.wordpress.com/2011/06/10/remembering-the-day-we-won-the-lottery/

Glad to be back! Will be revamping the blog, adding some things to it and lots of updates to come soon!