What is Joubert Syndrome?

.continuing the journey.

I cannot believe it has been two months since I have posted on here!! I have wanted to write all sorts of blog posts, and many times I think I start to write them in my head but then never actually get them onto the computer.

Blogging has been an outlet for me as we have been walking this journey of special needs and unexpected circumstances. It really helps me to process everything I have going on in my head and get it out onto paper {or a computer screen for that matter}. But it is also really emotional for me and it forces me to dig deep and face what is really going on.

And sometimes, I just can't. It's too raw for me to process everything. And as a result, I avoid blogging like the plague and instead get lost in blogland reading about others lives and it helps me escape my own.

And that makes it easy.

But nothing easy is worth doing, and I want to remember all of these thoughts and experiences, and so I am glad to say I am back!

This summer was a whirlwind of vacations, first birthdays, and weddings. It seemed like we were either just getting home from a trip or event, or packing to leave on another. Super fun, but super exhausting!

Dietzen family in Hawaii


Parker turned 1 on July 20th. I have wanted to write all about this past year and how Parker has changed our lives, but, as stated above, its very emotional and hard for me to get it out. But I will....it might just take a while :)


First Bite of Cake!

Opening Presents

We did a golf themed party for him with family and friends. We were planning on doing it at a park, but true to Seattle weather, it rained and so we moved to plan B and had it at our house instead. It turned out great and we were extremely blessed by all the people who showed up to celebrate Parker.

The spread....part of it at least!


Just a few weeks later I got to be a part of my friend from high school's wedding. Janelle married Justin in Golden, CO so I got to fly out to Colorado for a few days minus the hubs and baby. It was a fun weekend to get away and enjoy "girl" time but I missed Nick and Parker a lot! The wedding was beautiful and it was so fun to see them finally tie the knot after quite an eventful engagement period!

Janelle & I
Then just a few weeks after that my roomate of all 4 years of college, Erin, got married. I remember laying in our beds talking about how we were never going to find someone and we would end of being the crazy cat ladies. Dramatic....slightly :) But it has been so fun to watch God provide and bring Erin the man of her dreams. I cannot wait to see what God has in store for these two!

The Wedding Party
We had the month of August off from physical therapy, education therapy, and we had very few doctor appointments during that month. Honestly, it was a breath of fresh air. I love our therapists and they are only looking out for Parker's best interests, but sometimes all the appointments and the constant obligations to be somewhere for Parker can get overwhelming. It was great to just let Parker be Parker-no medical advice, no therapists, just us and Parker.

We started back up in September, and although it is great for him to be back in therapy, it was really hard for me. I sobbed for quite a while after they left that first day back. You may think it is selfish, or weird, that this would be emotional for me, but it's hard to describe until you have experienced it.
Parker in a stander device. This one was too big but it helps him to bear weight on his legs to help him stand.
Having someone come into your home to teach your child things they should be able to do on their own is hard. To have them teach your child to sit, crawl, walk is great, but also makes it very apparent that something is wrong. Just like attending all of these doctor appointments, to have someone sit there and tell you something is wrong with your child and that they may never be "normal" or be able to do x,y, and z is hard. I'm not sure there is an accurate way to describe it, but having his physical therapist in our house again really hit me hard.

Pretending to ride in the front seat while dad worked on the car.
But I am thankful, thankful that these services are available. Thankful we happen to live within the county line that allows us services by the biggest early intervention place in the country. This is a God orchestrated happenstance and I am forever grateful for that. But it doesnt make it any easier.

Having a break has been good, but being back, although hard, is good.

My big boy after his haircut!!
And right now I am enjoying this change in seasons. Loving the fall weather, the cozy sweaters and smells of cinnamon and spice and looking forward to what God has in store for us in this next season of life too!


2 comments:

The Mack's said...

So excited you are back in blog land! You have wonderful friends and family behind you and supporting you all the way. No one is perfect, and not one family in this world is perfect. That is how God creates us and we are all so very blessed. I love you my friend and can't wait to see you in less than 24 hours!!

Sambo said...

Love the new "do" dude!