.sincere gratitude.

Its only been a few days since I shared our gofundme page with others in order for us to get to Chicago for the Joubert Syndrome conference. I had planned on doing this post later as we wrapped up our fundraising, but I just had so much I wanted to say that I couldn't wait.  

I have to say, it took a lot of guts for me to press 'share' when I decided to share it with everyone. I HATE asking for help, and I don't feel like others should have to pay for our trip, but I knew this was something I needed to do. In fact, I created the page in November and it has taken me that long to finally share it.

People are always asking how they can help us and most the time I say "oh we are fine" or I'm not always sure where to direct people in how they can help us. I have had several people encourage me to try something like a gofundme page and allow those around us to help, so I decided to take that leap of faith and do it.

It took growth on my part. I had to put my pride aside and surrender. Saying "yes, we do need help if we are going to make this dream come true" and allow people that opportunity to help us.

And it's crazy that I have continued to learn and grow in so many ways just from creating and sharing our page. I have learned about myself, about others, and about kindness and generosity than I ever imagined I would.

It would be insufficient to put into words just how much each and every donation, prayer, encouragement, etc. that has been sent our way this week. I have seriously been a big old hot mess over here crying every time I receive an email for a new donation, a call, a text, etc. Like for reals...a hot.mess.

I have literally shed tears over every single donation people have sent to us.

I guess I just never imagined that this would actually come true! Yes, we planned to fundraise and make the necessary sacrifices on our end to attend the conference, but we never imagined the depth of generosity that would come our way.

People who have followed our journey. People from high school, old co-workers, family, friends, etc. It's been crazy to see who has made such a sacrifice to bless our family. 

I've learned this is so much more than the monetary gift. It's about people reaching out their hands and healing our hearts. Saying "we see you. we care. we want to help".

And it's so weird to be on the recieving end of it. To sit back and watch other people take care of us and literally make our dreams come true of being able to meet our Joubert Syndrome family and build that community.

Over the past 4 years that we have been on this road we have seen people work as Jesus hand and feet. Blessing us with meals, watching our kids, praying for us, sending letters, etc. None of that has ever gone unseen and its such a physical reminder in this life that God cares about us and is taking care of us.

As I've checked my emails this week and noticed the enormous impact this has had on my life, I can't help but see how God is working in my own heart.

He's healing my heart in ways that it has broken over the diagnosis', he's opening my eyes to how He is using the boys and our story to bring glory to Him, and He's stirring up generosity in my own heart.

I can't help but think of tangible ways in which we can be generous to others. To help make their dreams cone true. To be Jesus' hands and feet to someone like us who might just need that gift. 

My heart is forever changed by this experience this week and I pray I will grow to have a generous heart like those who have blessed us.

Love, Nick & Anna

.2015 Joubert Syndrome Conference.

One of the craziest things about Joubert Syndrome is how rare it is. With less than 1,000 cases diagnosed world wide, it can be an isolating road we are on. Through social media we have had the opportunity to connect with other families who know exactly what we are going through.

No explaining. No justifying. No judging.

They understand.

And with all those families being spread around the world, we have had very few opportunities to meet other JS families. We were blessed to meet the Ender family while we were at the National Institutes of Health in Washington DC for testing on Parker. They have two children with JS and are about 10 years further down the road in this journey. It was so encouraging to us to see how they are living their lives, how well their kids are doing, and to hear words of encouragement to us as we were just beginning ours.

We also had the opportunity to meet the Lee family when we were in Southern California on vacation. We went over to their house for dinner and just hung out. It was like a safe haven as we were able to talk with them and they were able to completely relate. They are a few years further down the road from us so they were able to give advice, encouragement, and offer a lifelong friendship. We had only ever met through facebook messages, but walking into their home, we felt like we had known them forever.

Most of the time I am the one who is processing through the boys' diagnosis and grieving through it all and Nick is there to offer encouragement and support. But that night when we were driving back after visiting with the Lee's, Nick said with tears in his eyes...

"That was the first time since the boys were diagnosed that I have felt NORMAL."

And that hit me like a ton of bricks. It was a moment I will never forget.

Our meetings with these families have been divine appointments and such a blessing and encouragement to us. It's hard to put into words what it is like to feel "normal" and to be around families who are going through the same thing we are.

Every 2 years, the Joubert Syndrome and Related Disorders Foundation puts on a conference. The conference is 4 days and includes seminars with doctors, specialists, and experts. There are sessions for siblings, grandparents, parents, etc. that address so many of the trials and daily struggles that come with Joubert Syndrome.

It is also a time for us to just BE. To be surrounded by other families who understand. To feel normal and accepted. To build relationships with these other amazing people and children.

The 2015 Conference is going to be held in Chicago, Illinois from July 22-25th. We have never had the opportunity to attend a conference and are really hoping to be able to make this happen next summer. In order to make this happen we are going to need to raise the funds to get there. Throughout the next 4 months we will be doing some fundraising to help our family get to our Joubert Syndrome family!

Below is a link to our gofundme page. If you feel inclined to donate we would be so blessed by your donation and support.

http://www.gofundme.com/dietzenfamJSconf

Thanks so much for following our journey and for always offering kind words of encouragement and support :)