.the unexpected journey: a short film.

I've mentioned before on the blog the opportunity we got to be able to attend the Joubert Syndrome conference this past summer in Chicago. I have tried to convey just how much of an impact this trip had on us, but sometimes words are inadequate to describe certain things.

After leaving the conference, Nick and I felt a strong calling to help the foundation raise money so that all families affected by Joubert Syndrome could have the same opportunity to attend the conference. As a result, we committed to raising $10k over the next 2 years. 

We are well on our way to reaching that goal through private donations, family, friends, and the proceeds from the Stella & Dot, but we keep dreaming BIG and hoping to far exceed this $10K goal and make a huge impact.

Through a really unique and amazing set of events, we were connected to two amazing film makers who flew up from Southern California to follow us around for a few days and tell our story. The got to intimately see the ins and outs of our lives-the good, the bad, and the ugly. And through some miraculous way, they turned our crazy and unexpected journey into a beautiful story and short film. 

Please take a minute to watch our story and help raise awareness for Joubert Syndrome and the foundation.

Please feel free to share this video!!! And thanks for being a part of our unexpected journey!

*****************************************************************************

Video Credits:

Help families along their unexpected journeys:
jsrdf.org/donate

Learn more about Joubert Sydrome & related disorders:
jsrdf.org
________________________________________­_______________
Continue to follow Nick & Anna's unexpected journey at:
nickandannadietzen.blogspot.com

To contact the Dietzen's, email:
annaelyse@gmail.com
________________________________________­_______________
Filmed & Edited by:
Shannon & Amanda Hardy

To contact, email:
hardytwinsisters@gmail.com
________________________________________­_______________
Music by:
Ben Lounsbury

To contact, email:
ben@faction.global

.raw emotions.

We've been on this Unexpected Journey for 5 years now and we've accepted where it's taking us and even learned to celebrate what its taught us. I've been able to function in daily life and create a new normal for us and talk openly about what life looks like for us and am more than happy to answer questions for anyone who asks. So when we were asked to share our story last week for a project we are working on, I dove in with no hesitation and was excited to be able to share our journey and what it has been.

That is until the morning came that we were supposed to film it and I woke up wracked with nerves. I can talk about Joubert Syndrome in medical terms all day long, or about the progress the boys have made, or what we expect and see in the future, but I knew it was going to be more than that. I was going to have to go back to the moments that changed our life forever.

The moments we knew something was wrong.

The neurologist office at Seattle Children's.

The phone call confirming the diagnosis.

I was going to have to go back to those dark days of grieving our dreams and plans for the future and figuring out how to pick ourselves back up again and recreate our plans and dreams. Just looking at the pictures to upload to the blog make me want to puke. The unknown, the fears, the feeling of helplessness as you watch your child being put under, and the reality that this is going to change your life forever.

And that is HARD. Really hard.

I always think that I've grieved through the pain, that I'm doing good and the kids are doing good, so it shouldn't hurt anymore. But having to relive those moments over again and reflect on what that was life was a bit overwhelming. I was hit with such raw emotion that I didn't know I still had. 

It was a good reminder that this is a journey we will be on for the rest of our lives and it is okay to not be okay with it all the time. I try and put on a tough face and hit our challenges and circumstances head on. But the reality is that this is tough, that there are some real and devastating challenges we face and it's okay to still be working through the pain.

And then I feel guilty for still grieving the diagnosis and that there is still so much pain, because this isn't what the boys asked for either, and yet they are the ones who have to live with it everyday. I wish they had every opportunity to choose what was within their reach, rather than having it chosen for them. But that's not the reality and we both have to deal with it.

I think those moments of unexpected grief and raw emotion really help to ground us. After sharing our story and working through the emotions that came up, I feel as though I am healed just a little bit more. Each time those waves of emotion hit, I am healing little by little. 

And There will probably never be a time that I am completely healed. Not until I see my boys running wild and free into the arms of Jesus. But it's okay to not be okay, and I'm starting to realize that.

.elle's first year.

In just about a week, my baby girl will be turning 1!!!

One year old.

I remember driving to the hospital breathing through my contractions and trying not to panic at what was about to happen. Not necessarily having the baby (although since I was having a VBAC there was a little fear for that) but trying to wrap my head around the fact that everything was about to change. 

We didn't know if she would have special needs or not. I didn't know how I was going to adjust to three children and what that would look like with them all being so dependent on me. I just remember telling myself to let it go, and my job was to listen to my body and work through labor and that God had the rest under control.

I remember when she was born (finally!) and looking into her eyes and just crying. I had never been so emotional after having a baby. I think partly because the VBAC was successful and that was a huge prayer of mine, but also because I looked into her eyes and just KNEW in my heart that she was unaffected.

And trust me when I say that I would love her the same regardless of a diagnosis or not, but knowing I wasn't going to have to go through the emotional and physical journey of another diagnosis and the rollercoaster of a journey that it can be. It was the greatest relief I think I have ever felt.

It's a little bittersweet that she is entering toddlerhood and no longer a baby, but mostly it's sweet. This first year with her has been a truly amazing year and so healing for our family. She is absolutely a blessing from the Lord and completes our family in all the ways we never imagined!

For the first year of both Parker and Lane's life, my heart was continually breaking and heavy from the missed milestones, the doctor appointments, the diagnosis and the unknown of what that meant, the acceptance of unrealized dreams, and adapting to what life was going to look like.

I tried to enjoy watching them grow as much as I could and I really genuinely celebrated everything as it came, but there was still an underlying sadness as we came to accept that things were different than what we had imagined.

Babies change and grow and develop so quickly in that first year that as most kids were starting to sit up on their own, mine were still laying on the ground; as most kids were beginning to walk, mine were just starting to hold their head up. And each milestone that they didn't meet was another moment of grieving the obstacles they face.

That first year of their lives was a lot of joy, but a lot of tears and sadness too. They are the absolute joys of my life, but trying to process the unknown of what life is going to look like for them and waiting to see how they are going to grow and develop is kind of excruciating in some ways.

I remember when Lane turned one year old, I just sat in our bedroom and cried. It was a harsh reminder to me that he was no longer a baby and that I couldn't really ignore the fact that he was so behind. Yes we already knew he had Joubert Syndrome and he was making progress, but now strangers would notice how behind he was and that opens up a whole other can of worms. 

He was no longer a "baby" and still working on his milestones like all the other kids his age, he was 1 and all his peers were walking and starting to talk and it was clear that he was different.

And I'm not sure why that was such a big deal to me, or why turning 1 was kind of traumatic in this special needs journey, but it has been with both boys. The emotions and worries that go along with special needs parenting is tough to explain unless you've walked that road. 

This first year with Elyse has been so easy. Watching her meet milestones and grow and develop as a "typical" child would has been healing to my heart. Knowing that I am not going to have to worry about all the things I worry about with the boys helps put my heart at ease. And it's been just amazing to watch the relationship that the boys and her have and know that God had her life planned out to be in our family already even when we didn't know it.

And I think because of the greater perspective I receive from being Parker and Lane's mom, I have enjoyed parenting a baby again because I just don't worry or care about all the "should's and should nots" that other moms think need to happen. If she eats fruit before vegetables when she starts solids she is gonna be OKAY, if he happens to have some gluten instead of organic quinoa or whatever but WHO CARES, and she will sleep through the night eventually but SHE IS JUST FINE if she still wakes up a time or two. Because those things really DON'T MATTER!!! And I wish I had learned that sooner.

Maybe it's the third kid and you learn from your mistakes, or maybe it's that I have been gifted an unbelievable perspective from the boys' diagnosis that all that really matters as a parent is that we love them. And those little things really in the grand scheme of things don't make a difference in the person that your child becomes. 

Elyse is easy and relaxed and goes with the flow and I think that's because that's how I parent with her. I was so consumed in what type of parent I should be with the other two-especially with Parker since he was my first, and then trying to merge that with their special needs and it was so hard. I constantly felt like a failure.

And this time around...this time I feel like I'm doing a pretty dang good job being a mom to Elyse. And not only her but to her two older and amazing brothers. The little things don't matter and that allows me to be better at doing the things that do.

Teaching them to be kind. Teaching them to love others. Helping them to know that we love them unconditionally. Teaching them to be brave (although they teach me this way more than I teach them).

So now with Elyse turning 1 next week, I am just so grateful that she is unaffected and we got the opportunity to experience watching a typical child grow up. But not just because it's easier in a lot of ways, but because she's helped us realize just how amazing and resilient her brothers are, that parenting is tough no matter what the added complications, that every person has their strengths and weaknesses, and that God is a good God and gave us 3 perfect children.

I can't wait to celebrate her first year of life and look back at all the great memories so far and how much we have grown and learned from her being added to our family. 

.stella & dot.

Thank you all for your positive comments and support as I venture out into this new journey. I am excited for what this could become and how the money will impact the foundation and the lives it touches.

I won't be bombarding you with sales pitches for the Stella & Dot products all over the blog, but I do want you to know about the trunk show that I will be having next Thursday. This will be my first show I am hosting and will be a great way for me to get started on fundraising.

The show will take place at my house, but obviously most of my readers do not live nearby so you can shop online if that is something you are interested in. Below are a few of my favorite items that I just love so much!!

I LOVE a stacked wrist and these are some of the new goodies for fall!

The arrow bracelet is probably one of my favorite Stella & Dot items. I wear it every day and its less than $20 so its the perfect addition to a watch or a stack of bracelets.

The sutton is an awesome necklace because it is a 5 in 1, meaning you can wear it 5 different ways. It's nice that you only have to buy one thing but can mix and match it as you please.

This is on my wishlist for the fall. I absolutely adore this clutch. And there is a matching bag that goes with it. To die for!

And then the engravables are awesome. I just got mine with my wedding date on it, but the possibilities are endless. And they are simple and understated but add so much to an outfit...perfect for my current phase of life.

Here is a link to browse through the website to see if there is anything that you are drawn to:

http://www.stelladot.com/sites/annadietzen/?lc=en_us

Thanks so much for being on this entire journey with us and being invested in the lives of our children! 

**images taken from the Stella & Dot pinterest page

.be brave.

So we've been back from the conference for a few weeks now and it's been a complete and total whirlwind. Life has been so busy I haven't had a chance to really decompress.

To be honest it was really hard coming back to real life after being surrounded by such awesome people and getting a perspective shift.

Was just a very needed and good reminder that there is so much more to life than our little daily life shows and that relationships and other people are so worth investing in and all that matters!

One of the things that I walked away from the conference with was a boost in confidence that this journey we are on is making a difference and people are impacted by the boys' lives. 

This has caused Nick and I to really take a look inward at how we can continue to use this journey for good and make an impact. 

One of the ways we feel we can do that is to raise money for the foundation. The Joubert Syndrome and Related Disorders Foundation was responsible for putting on the conference as well as a multitude of other things. The foundations focus is on providing support, education and research for people affected with JS. And Nick and I felt so much support and education from attending the conference that we feel it is really important for others walking this road to continue to have this opportunity.

So when we got home and talked about what we wanted our next steps to be, we decided to go big and take a huge scary leap of faith and commit to raising $10k for the foundation in 2 years.

This is probably one of the scariest commitments I have ever made in my life. But I feel so strongly about the cause and the impact that I am willing to step out of my comfort zone to reach this goal.

Being a stay at home mom of 3 small kids with crazy therapy, appointment, and activity schedules, I am not really at a place where I can get a job outside of the home. Just would not be fair to my kids or my employer....at least during this phase of life. 

So while brainstorming ways I could contribute to this sum of money while still staying home with my kids, I decided to sell Stella & Dot jewelry and donate my proceeds to the foundation. I have been loving their trendy jewelry for a while now and thought this would be a great opportunity for me to give back.

This is also a really scary thing for me to do. I am really not a fan of multi-level marketing companies and the constant inundation of requests to buy things all over my social media sites, but I do feel like a lot of these companies really do have great products to offer. And it fits into my current lifestyle and phase of life I am at. I actually really do miss a lot of aspects of working, but being home is where I need to be right now.

I LOVE Stella & Dot jewelry and it has actually made me really helped me feel more put together and feminine. I know that sounds weird, but when you stay home all day and are constantly in doctor offices and therapy centers, being able to put on a cute necklace or bracelet to pull together an outfit helps you to feel better about yourself.

I really feel like this is something that I can do during nap time, at night and on the weekends and be able to work a little and have an outlet there as well as make a difference and contribute to the JS foundation.

I feel like it's a win-win situation, but is really requiring me to step out of my comfort zone. Ahh!

So if you have any great fundraising ideas or good ways to help raise money or would like to purchase any jewelry or host a truck show and get free jewelry with Stella & Dot and help support the foundation, I would love to help!! I will send you an image with the amount that was donated to the foundation as a result of your trunk show :) It can be online or in person as well!

If I have learned anything since we first found out Parker's diagnosis, it is that this journey will grow you and refine you in ways you never imagined. I'm excited for this new chapter of our journey on this special needs path and can't wait to see what the foundation does in the future!!

So here goes, I'm *trying* to be brave and jump in head first to this huge commitment and new job. Should be a fun journey :)

.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!