What is Joubert Syndrome?

.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.



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