.unconditional love.

My mind is still buzzing and processing all that we learned and experienced at the conference and it will probably take me a few weeks to be able to put into words what I learned.

But the one thing I cannot get out of my head is the amazing families we met.

Honestly, I have never ever been surrounded by such amazing individuals.

It's hard to explain how wonderful and amazing these parents and children are. The amount of unconditional love and selflessness that was radiating throughout the conference was unreal. Seriously.

It brought me to tears more than one time just looking at the way that the parents were interacting with their kids, the way siblings were taking care of each other, the way the volunteers were taking care of families and kids and making sure we all had what we needed. It was seriously incredible.

I just felt like this was a group of people who truly "get" what life is about. It's not about what they can get out of life, or pursuing their interests, but about taking care of their children and helping them become the best version of themselves they can be. It's about unconditional love and expecting nothing in return. About building relationships and loving people without judgement. About a greater purpose than living for ourselves.

I know that most special needs parents hate it when people say to them "only special people get special children" because we all really had no choice in the matter. But I really honestly feel like it is true. These parents were unbelievable and so special. Not everyone can do the incredible job they are doing. 

The spectrum of children with Joubert Syndrome is wide and they all possess different skill sets and challenges. I just couldn't believe the resilience of some of the families whose children have many medical and physical complications. And the love between them was palpable. There was never any "victim" mentality or anger at where there kids are, although there sometimes was sadness and understanding at the reality of the situation, but I never heard anyone say "why me" but rather "look at how amazing my child is".

I felt guilt for the times I have felt overwhelmed with my boys needs because they appear to be relatively mild within the spectrum. It all just seems to unfair sometimes even within the same syndrome that some kids can be so much for affected than others. But it really helped me to be so thankful for where we are at and pushed me to want to be a better mom to my boys.

On the first night one of the older kids, Noldon Starks and Scott MacLellan spoke of their experience growing up with Joubert Syndrome and attending college and finding success despite their limitations. Noldon spoke directly to me in what he was saying and was amazingly well spoken and has overcome a lot within his life. He gave me so much hope for what the future can look like for Parker and Lane.

They did a question and answer session afterwards with his parents and someone asked him how he managed his frustrations when things in life came to him harder than others. And his answer still leaves me in tears. 

He said that he just constantly repeats the verse Philippians 4:13:

"I can do ALL things through Christ who strengthens me"

And that was an "aha" moment for me. This is what life is all about and this is my most important job as a parent....helping my child find a relationship with Jesus despite any of life's challenges. And not only that but finding our strength through Him.

And that's what all these families taught me. Its all about LOVE and unconditional love at that. So many of these families may never get to experience their child even saying "I love you" back, but there was no expectation of reciprocation, just pure unconditional love.

And my Joubert Syndrome family emulates love. And I want to continue to cultivate that in my own life.

THANK YOU to all of the amazing families we met this past week in Chicago. You have forever changed my life!

.js conference-day 1.

Well we made it to Chicago!! The Dietzen family circus arrived intact and ready for a great time at the conference. 

The flight was interesting but thanks to the help of my parents who flew from Seattle to Chicago with us, we were able to manage it. Elyse was our little party animal on the flight and would not give into sleep so she screamed a good portion of the flight until she finally gave in!! We were "those" people on the plane with the screaming baby. Yep!

Once we arrived we took the shuttle to the hotel and got checked in. We were all tired and just exhausted from the long day but needed to get some food and some grocery items. We ended up getting the kids McDonalds and waited almost an hour for some Chicago style deep dish pizza for us and my parents. It was definitely worth the wait and we thoroughly enjoyed it. I kinda feel like you have to try all the different foods when you travel to get the full experience! 

We all came back and crashed and slept great! The kids slept awesome and slept from about 10:15-9 this morning!! Definitely thankful for some rest.

We had some free time this morning so we took the "el" train (I think that's what it's called) from our hotel into downtown Chicago. The boys thought it was so much fun and it was actually a pretty enjoyable experience for public transportation.

When we arrived in the city we were greeted by sirens, construction, music, cars, and just about every other loud noise you can imagine. I loved the sights and sounds of the city but the boys were completely overwhelmed! Sometimes it's hard to predict with special needs just what is going to set them off, but trying to process and take in the city was really tough for the boys, especially Parker at first.

we walked over to Millenium park and saw the infamous "bean" and water structure and walked across a bridge to this amazing park! Seriously one of the coolest parks we have been to. But it was hot and there were so so many people there so the kids didn't want to do much. But with some encouragement and walking around we were able to get them settled and they had fun playing on a ship and crawling all around.

We had lunch and then took the train back home, got the kids settled and my parents watched them while we went downstairs for conference orientation and a few presenters.

It was so great to start meeting families and people we have connected to online but never met in person. Kind of crazy how technology can connect you that way without ever having met in person. It's a hard feeling to describe when you meet people walking the same road as you. Comfort, security, a sense of relaxation. I'm excited to get to know these families better as the days go on!

We heard from two young men who have Joubert Syndrome and have completed or are in college and have accomplished a lot despite their challenges. It was really amazing to hear them speak and then to have a Q&A with their parents after. I'll be honest though, it was pretty emotional for me. Just thinking about the future is kind of overwhelming and then our role in their success, along with our hopes and dreams for them, it's all a complicated mess of emotions. 

I know the next few days are going to be full of lots of emotions and I'm not sure I will be able to articulate them out or process them here on the blog just yet. But I will do my best to express what we've learned in the weeks following the conference.

So far our trip has been amazing and I know the next few days are going to be pretty special too. We want to thank all of the people who helped get us here with their love, support, generous donations, and prayers. It's amazing to know that the only reason we are here is because of you!!

I'll try to update the blog as I can with  a recap of what we are up to but I'm posting from my phone so it might be kind of funky!

.thirty.

As I write this post, it's my last night in my twenties. Tomorrow I will officially turn thirty and enter into a new decade of life.

I can't help but be a bit nostalgic as I look back over my twenties. It was a FULL decade. I accomplished a lot and so many of my dreams came true.

I grew up a lot, matured in ways I never could have imagined, experienced the highest of highs as well as a lot of heartache and mourning. 

My twenties were a lot of transition and new life experiences and I finally feel like we are a little more settled, a little more established and I am kind of looking forward to a comfortable routine that comes with the seasons of life we are moving into.

At 21, I got engaged to Nick on a friday night and then graduated college the next morning!! Then did long distance for 6 months and got married in December of that year at 22.

I moved from Orange County to Sacramento in August and then Sacramento to Seattle in December after we got married.

At 23 I started my first "big girl" career job working in corporate america. I spent 5 years working in sales 40 hours a week/5 days a week. I also ran my first half marathon in Kirkland, WA.

We bought our first house when I was 24 and moved to Bothell, WA to settle down and hopefully start a family soon.

At 24 I got pregnant and at 25 I had my first baby, Parker Derek Dietzen. And that same year Parker was diagnosed with Joubert Syndrome and Nick discovered he had a 12 inch long blood clot, later diagnosing him with a rare genetic blood clotting disorder. 

At 26 I got pregnant again and at 27 had our second son, Lane Nicholas Dietzen. Shortly after he was born I quit my sales job and we packed up and moved to Spokane, WA. I also ran my second half marathon in Couer D'Alene, ID.

At 28 Lane was diagnosed with Joubert Syndrome and a few months after that I found out I was pregnant again.

At 29 we completed our family with a beautiful baby girl, Elyse Frances Dietzen, sold our first home in Bothell, bought a home in Spokane, became debt free (bye bye student loans!!), ran my third half marathon in Spokane, WA and we have settled into a new routine with our family of 5.

We've lived a lot of life in the past 10 years and looking back it seems like it was way longer than just 10 years!

All of the life experiences that happened in my twenties have made me who I am today. I started my twenties in a bit of an identity crisis-not sure exactly who I was, not sure what I wanted to do with my life or who I wanted to become. And I end my twenties as a confident, strong, and brave woman of God who has faced some really tough stuff and been able to see the beauty in it all.

I feel so lucky that Nick and I have been able to essentially "grow up" together. To get to figure out what it means to be a grown up, to start our first jobs, buy a house, start our family, etc. And do it all as a team. I look back and can't believe how young and naive we were when we got married, but I love that we have chosen each other over and over through all of these experiences and have such a richer and deeper love now.

I love that my dreams of becoming a college graduate, a career woman, a wife, a homeowner, and a mom, and a stay at home mom- all came true. That I was blessed to have three beautiful babies to raise and be responsible for. 

We've probably had to grow up faster than most with the boys' syndrome and face a lot of tough situations as a result, but I've become such a better person as a result. I never would have imagined that I could be so strong, so brave and so resilient until I was faced head on with Joubert Syndrome and all that meant for our family.

I'm excited for what 30 will bring. 

What I'll look back and have learned in 10 years. 

What life experiences I will have and how those will shape me.

I'm excited to watch my kids grow and develop and have their own life experiences.

I'm excited for my marriage to grow deeper roots and evolve as we phase out of the newborn stage and into the elementary years with our kids, to the more established years in our careers, the more comfort of the rooted relationship.

So here's to my twenties, you've been great to me. 

Bring it on 30!