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.


7 comments:

Jenalee said...

great post. I'm so glad you are learning so much through this experience. We serve a great God.

Shannon Chan said...

Thanks for sharing that Anna. You can tell just by the way you write the blog, and share your thoughts how far you guys have come and grown. As well as how much you are trusting in Him, as well as rejoicing in the life you get to have with your son and husband. It is wonderful that you guys were so blessed to be able to have a son. :) God bless! :)

JilCloke said...

You are an amazing family!! Thanks for sharing your blog. We think of you often. May God continue to bless you on your journey. Hugs

Jill
The Cloke Fam;)

Ashley C. said...

Thank you for sharing. Thank you for showing a different side of life...and for illustrating what faith looks like. You guys are amazing!

Anonymous said...

Beautiful post! I can honestly say that I know exactly how you are feeling...both the highs and the lows. Thank you for sharing. What a blessing this journey is!

the brauns said...

You are such an amazing writer. Each time I read your blog I am captured into your story. I'm blessed to be able to be a witness of the ways you keep choosing to push into God through pain and unknown. Love you!

Ashley.Preston.Tate said...

I got goosebumps. Very profound. You are very wise and Parker is very blessed to have you has is mother.