.vulnerability.

"If we threw our problems in a pile and saw everyone else's, we'd grab ours back."

-Regina Brett

One of the biggest things I have learned on this journey is vulnerability. Whether I have liked it or not, I have had to learn to be vulnerable with myself, with my children, and with others. I have cried in front of perfect strangers, lost my temper at the slightest of things, and gotten to the end of my rope more than a few times.

Through this vulnerability I have had to look inward and stare my pride, my fears, and my weaknesses straight in the face. And through it all, I have come out a better person. Working through this and embracing it has allowed me to share our journey, to allow others a glimpse inside, and allowed for some pretty incredible things to happen.

I have been amazed at the people who have emailed or called or have come up to me and mentioned how the blog has touched them. How reading through some of my weakest moments has created an "aha" in their lives or helped them cope or deal with something going on in their lives. 

And as cool as it is to see our story reaching and touching other people, each time this happens it teaches me something new.

I know not many people are necessarily walking the journey of special needs or dealing with the struggle of raising two little boys with significant disabilities, but everyone has some type of struggle and hurt in their lives. Everyone has a "joubert syndrome" in their life.

It's been amazing for me to hear some stories of what someone is going through that I had NO IDEA about. The turmoil and struggle behind their smiling faces.

Our struggle is hard to hide because it is so outwardly apparent. I cannot hide the fact that my boys aren't walking, or can't go run with their friends on the playground. And in someways that has helped me deal with it because I can't hide behind a smile. And also because I can't keep my mouth shut or my tears away :)

But everyone has something. 

And honestly, the stories, the friends, the family that have opened up about their "joubert" have helped us to not feel so alone.

So many times I will feel so isolated, so alone. Because there are very few people walking the same journey we are. But then I will hear a friend talk about their infertility, or the diagnosis they received, or the broken relationships that they have.

And then I realize, we are not alone....

We are all on this journey of life together.

We are all working through unmet expectations.

Through unrealized dreams.

And without the vulnerability and relationships around us, we are alone.

As our story continues to unfold and this New Year begins, I hope that this vulnerability stays and that I can always remember that we are all in this together. Special needs or not, there is always a "joubert" and a way to walk the journey together.

And that's what makes life so beautiful.

.merry christmas.

It's Christmas Eve and I am eager with anticipation for what the next few days hold. 

The holiday season this year has been so much fun. The boys, mostly Parker, are starting to grasp what the holidays are and really enjoying celebrating. We have been trying to do fun activities to create memories and start new traditions within our little family. I think I am actually more excited for the boys to open their gifts than they are. Nick has to keep reminding me that Christmas is still a few days away because I keep trying to let them open *just one* gift each day. 

Christmas memories are so fond in my mind. I can remember Christmas so vividly and all of the things my parents did to make it such a neat experience for us. From St. Nick's day on December 6th, to the sugar cookie decorating, the advent activities, Christmas presents, etc. I am hoping to put in the time and effort to make these special memories with my children so they look back on holidays and Christmas with joy and love.

I've really tried to explain the TRUE meaning of Christmas to the boys and try and help them grasp what it means that Jesus came down to earth. What that signifies in their lives and how it is one of the most pivotal moments ever {the resurrection of Christ being the other}. I hope that through the presents, the songs, Santa, and the traditions, a love for Jesus and the hope and life he brings will be born.

Being a mom now, the Christmas story is even more poignant to me. I cannot imagine being Mary and Joseph and given the gift of a child, and that child being the Savior of the world. It blows my mind that God would send his only Son to walk among us and rescue us from ourselves, knowing that he was going to suffer and be crucified the way he was. 

With the boys having special needs and some elevated health risks, I cannot let my self think too far in the future because it is filled with so many "what-if's". But God KNEW his son was going to be brutally killed for the sake of others, yet he did it anyway to save me and you. 

It blows my mind. 

That selfless kind of love.

And all for the sake of me. Of my husband. Of my boys. Of all of humanity.

Crazy love.

I'm praying that as we open our gifts tonight and tomorrow and are surrounded by friends and family, that we understand the meaning behind it and why there is cause for such an enormous celebration. I hope that these new memories for our family are rooted in truth and conviction and that I am doing my part to teach these lessons to my boys.

Merry Christmas!!!

.2013.

Wow! Cannot believe another year has gone by. I know it sounds so cliche but it really does seem like time goes faster once you have kids. I want to relish every moment and remember everything because it changes so quickly.

2013 was another big year. Lot's of highs and a lot of lows. It seems that we can't just have an uneventful year, but I guess that's what keeps life interesting.

In January, we relocated to Spokane to be closer to family and for me to have the opportunity to stay home. I was excited to move near family and even more excited to be at home with the boys, but leaving Seattle was tough. After 5 years we had grown to love it, had built a strong community, loved our church, and even learned to embrace the rain {crazy, I know}.

Settling into our new life was easier than I had anticipated and we quickly found a new church, I was able to get Parker started back up in his therapy services, and we enjoyed having the snow and a real winter. 

With Spring came the new adventures of enjoying our new yard, playing outside in the SUN, training for a half marathon and completing it, tax season, golfing, and the anticipation of summer.

We thoroughly enjoyed our summer. It was dry and hot and we were able to enjoy many days at the pool, golf course, playing in the sandbox, going for runs, etc. Pretty much anything we could do outside, we tried to do. We even were able to have a small little garden that produced quite a few good crops! It was so fun to go out to the yard and pick some produce for dinner.

We were able to travel to Northern CA to see my parents for a few weeks in July, and then the entire Dietzen family went down to Corona del Mar for a week to spend a week at the beach and send off Auntie Hannah to college. While in Southern CA we were able to connect with the Lee's, another Joubert Family. It was a very healing time for us to meet someone walking the same road as us and Nick and I have been so blessed by their friendship. 

As the year went along, I always had a constant weight in my heart that something was not totally right with Lane. He just wasn't developing at the same rate as he should, and I just felt in my heart that he had Joubert Syndrome as well. After pursuing the doctors and voicing my concerns we finally got an MRI scheduled and Lane was diagnosed with Joubert Syndrome on September 4, 2013. Although I knew this in my heart, it was still hard to hear and to have my fears confirmed.

The fall flew by as we were busy with Parker starting in a special needs preschool 4 days a week, having therapy 3 times a week and Lane having therapy 3 times a week as well. I spent most of September driving the boys to school, dr appointments, or therapy, but we have gotten into a routine and it is much more manageable now.

Parker has absolutely THRIVED being in school and is learning new things every day. His vocabulary has exploded, he is a little social butterfly, has met almost all of his IEP goals for the year, and has everyone wrapped around his little finger- he is quite the flirt! We have been able to meet some friends through Parker's school and it is so nice to connect with other families and parents of children with special needs.

Parker went from screaming every day at therapy to asking to go and smiling through it. He works so hard, but has learned to enjoy it and is continuing to make excellent progress. He got new custom orthotics for his feet that help him to stand and he has a little walker that helps him to walk. We are hopeful and prayerful that he will begin walking within the next year. 

Lane is our silent but stubborn little guy. He is a pretty easy going little dude who smiles a lot, but has a quiet stubbornness to him. Especially when it comes to therapy, he does NOT like someone forcing him to do things and he makes it known :). He works extremely hard too and is doing well, we are just hoping he learns to love his therapy like Parker does because it's not going away anytime soon! He is sitting independently, rolling like crazy, waving, talking, playing peek a boo, and starting to show beginning signs of crawling. We are hoping he starts to crawl soon and bear significant weight on his feet this next year.

Nick is doing great at his job as a CPA as well as exploring some work within the Wealth Management side of his firm. He works hard so that I am able to stay home with the kids and for that I could not be more grateful!!

I have loved being able to be home with the boys this year and be fully present for this time. My weeks are filled with therapy, school, and any other needs the boys have, while trying to maintain the household, but I couldn't be happier doing it. This is my dream job and I am so thankful to finally have this opportunity.

We have rejoiced, we have grieved, and we have grown tremendously this year. Nick and I always look at each other and say "this may not be what we would have planned, but we wouldn't have it any other way". God has met us in some of our darkest times this year and shown us what it truly means to surrender to Him. 

We have been abundantly blessed with friends and family who have rallied around us and lifted us up when we couldn't do it ourselves. Who have loved us and our boys unconditionally. And who have supported us and been there for us when we didn't necessarily deserve it. 

I can't help by look back at this year as a defining one for our family. We are happy, we are blessed, and we have so much hope for the future. I pray that 2014 is a year of growth, of huge milestones, of living each day to it's full potential and living in the moment.

Merry Christmas and Happy New Year!

Love, 

The Dietzen's

.priceless gifts.

With Parker and Lane both recieving multiple therapies and Parker is a special education preschool, there are endless amounts of people pouring into the lives of our children. 

With the holidays approaching and the season of gift giving, I have been wracking my brain trying to think of a gift for each of them that would express just how much we appreciate them. It is actually impossible to give a tangible gift that truly expresses how deep our gratitude goes. Without these people devoting their lives to making my children's lives better, I am not sure what their future would look like. Because of them, both Parker and Lane are thriving and I have been given so much hope for their future.

Instead of spending a fortune on a material possession for each person that invests in my children, I decided to do something a little more heartfelt and creative that would hopefully express a little bit of our gratitude. 

One day while driving the thought came to me to buy a little item (candy, socks, chapstick, etc.) and attach a reason why I am thankful for their support and help. So I came up with a list of about 12-15 things that I thought would work perfect and headed off to the store.

Below is the list of items I bought, along with the saying I attached to each one:

Chapstick- For "speaking" with kindness and compassion as we walk this unexpected journey of special needs

Reeses Pieces- For loving Parker and Lane to "pieces"

Kleenex- For "cleaning" up their messes

Hotwheels Car- For helping "drive" their success and development

Lotion- For your "healing" hands

Starbucks Via- For having enough "energy" to give them the best therapy services

3M Sticky Notes- For helping us through "sticky" situations

Socks- For "walking" alongside us all

Livesavers- For being a "lifesaver" and devoting your life to serving my children

Starburst- For pushing my children to "burst" through to the next mileston

Sour Patch Kids- For dealing with my sometimes "sour patch kids"

Sweetarts- For being a "sweetheart" with our boys

M&M's- For pushing them to do "More&More"

I wrapped an old shoe box with wrapping paper and put all the items inside and will eventually wrap it will clear cellophane wrap to create a "gift basket" type look before I give it to them.

I loved the idea that this was something simple that we could make that would hopefully end up meaning something to them as it is personalized to what they do for my kids. I changed the sayings a little bit for Parker's teachers and aides at school and made a small little bag for his bus driver and aide, but I am so excited to give this to them.

Hopefully they understand and know how much we appreciate them and enjoy a little sweet treat or small gift along the way :)