.family comparisons.

Growing up, both my husband and I spent our time playing sports and doing all things active. When I think on childhood and what a "good" childhood looks like, I have always imagined sports as a huge part of that. I couldn't really imagine it any other way.

When we first learned about Joubert Syndrome and how that would affect our boys' future, one of the hardest parts for us to come to terms with was the fact that they may never be able to participate in organized sports.

And honestly, that was really hard! I always imagined being the soccer mom, with the minivan, and bringing snacks out at halftime. That's the kind of mom I wanted to be and couldn't wait!!

But those dreams got sidelined when we learned the boys would struggle so greatly with physical things. It wasn't that I wanted my kids to be the superstar or was banking on a college scholarship, but I wanted them to be a part of a team...to learn those life lessons and learn the good and tough lessons that can be taught through sports.

And as time has gone on, I've grieved the fact that my friends get to sign their kids up for sports, and their weekends are filled with games and practices and the comradery that goes with that. But I've also come to terms with the fact that our life looks different and that's okay.

I read the above quote in the book Love Lives Here by Maria Goff and it spoke so deeply to my heart. I think its so important that we focus on what makes us the best versions of ourselves.

Sports might not be the thing that makes our family the best versions of ourselves, and that's okay! It doesn't make one family better than the other, it just means we all need to find what works for us. To go be OUR family and not someone else's.

I can't wait to continue to work on this and continue to find the things that light us up. That are the move loving, hopeful versions of our family.

.blogging dilemma.

I started this blog as a newlywed living in a new city as a way to keep friends and family updated on our new life together. Then as we walked through Parker's diagnosis and then Lane's as well, it became an outlet for me to process through this huge life change and share our story. Then as life got busier and we added Elyse to our family, writing and sharing has taken a back seat.

I've started so many blog posts but never finished them, and thought long and hard about if I should just delete this and be done or if I should try and revive the blog and continue sharing. The only thing that has kept me from deleting it, is that I still receive a few emails a week from newly diagnosed families, dealing with Joubert Syndrome, and they stumbled upon my blog through a google search. That they've found hope through what I've shared about our journey and reach out for the connection that seems so lost when you start on this journey. That alone is enough to keep me going.

Blogging has changed so much since when I first started, and while most blogs are more professional and definitely more beautiful, I've had a hard time following blogs anymore. And am still trying to decide if this is the avenue that I want to share our story.

Just like most social media accounts, blogging has lost a lot of its authenticity to me. All the pictures are posed, with a professional photographer, with perfect lighting. Images only show a portion of a room or space that is styled and perfect. And every blog is linked to products and advertisements so that there is always some type of sales involved.

Now don't get me wrong, I love beautiful images as much as the next person, and I completely understand wanting to make money while sharing your talent!! I think blogging is a wonderful job with amazing flexibility, I just wish here was more transparency, authenticity, and vulnerability. And each blog serves a different purpose, some are just for beautiful images, some decorating, beauty, lifestyle, crafting, etc. But I used to love to read and learn peoples stories and journeys, and as things have gotten more "professional", the stories and journeys seem to have shifted to items and products. I have a lot of friends who blog and I think they are amazing and incredible talented and their content fits their desired target market.

But I always seem to want to get to know the writer, the author of the blog. Find out why they are passionate about what they are doing, how they got to where they are, and what their "why" is. And maybe that's why I should continue blogging...to bring a bit of those things back to the blogosphere and share the hot mess of our lives, no filters involved. Because I feel like our world needs more of that. Needs more REAL...instead of perfectly styled and presentable.

Maybe its the fact that no matter how filtered I want to make our lives, there is always reality that things are hard and messy and that this journey we are on cannot be masked. That its hard and heartbreaking yet joyful and rewarding and everything in between. And I can't really hide behind the images. Or maybe its the conviction I feel God has placed on my heart to share our story no matter how difficult it may be for me.

And maybe people can relate to that and

our journey is worth sharing. I don't know exactly.

But what I do know is that the people I have connected with and met through this blog has been amazing and worth it all. And bringing hope to others walking through a new diagnosis, or processing through life when something unexpected comes is priceless.

So who knows where this next phase of the blog and our journey will take us, but one thing I want to be sure to continue is to be real and transparent regardless of the avenue we choose to share. Because without vulnerability, its really just words, and I want people to connect and feel beyond the words on a screen.

 

.continuing on.

It's been a hot second since I've updated this blog and continued sharing our journey!! We've had quite an eventful past 6 or 7 months and I have so much to share. Writing on this blog and sharing our story has truly been such a necessary therapy for me and it's really helped me to process all that has come with Joubert Syndrome. I started a page on Facebook called the Unexpected Journey and I've just been uploading updates and different things there and kind of forgotten about the blog and how much I love to write.

We've reached some huge milestones and now have three walking kids in our house! Parker and Lane both decided they were done with their walkers in May and haven't touched them since! We knew they could do it for a while, but it had to be on their terms and when they decided they were going to walk independently, man they were off. 

It's crazy to see how in just the past few months their strength, balance, and coordination has improved significantly!!! I didn't realize just how difficult and exhausting it was having to physically carry them everywhere. I knew having physically disabled kids was tough, but it hasn't been until they are walking now that I am able to look back and see just how difficult that was. At one point I was 9 months pregnant with Elyse and carrying a 2 year old and 4 year old everywhere. I'm not sure how we survived but we did! And I AM SO THANKFUL that they have now gained the ability to walk.

Walking and the ability to have my hands free is something I will NEVER TAKE FOR GRANTED.

EVER.

They still are not walking and moving as a typically developing child, but they are doing amazing and have gained so much confidence and freedom that I am choosing to focus on that! 

We are also in the trenches of kindergarten with Parker and preschool with Lane. I didn't anticipate Kindergarten to be such a big and emotional step for us. Parker has been in the school district since he was 3 and this is his third year of going to school so I kind of felt like we had already done the school separation grief that most parents experience when their kid starts school.

But wow was I surprised when we went to school on that first day. It was so emotional and tough for Nick and I. We had to grieve his diagnosis all over again in many ways. It was very apparent when he was around all his peers that Parker was different and had many challenges that the other kids wouldn't face. Listening to the teacher and all of the expectations and skills that they have for the kids this year was overwhelming to me. I know where Parker's weaknesses and struggles are and it just seemed so apparent to me that this was going to be really tough for him. We did an activity with them and then they said goodbye to the parents.

Nick and I put our heads down and walked out of the classroom and broke down once we got to the car. It's one thing to let your child do, but it's another thing to let them go knowing they are going to struggle. But time again, the Lord has proved to be faithful and really answer our prayers. Parker has been doing so well in school so far and has really stepped up to the challenge. He's learning math, starting to read, his writing is improving, he's motivated to do homework, etc.

All in all it's been a great year so far. And although every morning at drop off I pray for God to protect him, strengthen him, and be with him, I know that he is in good hands with the staff and students at his school.

Lane has been doing amazing as well. He's such a physical kid and has blown me away with his walking. He's now jumping and running and able to keep up really well with his peers. He just had his yearly evaluation at physical therapy to measure his progress and where he falls, and he improved so much from his evaluation just a year ago. He's really not that far behind his peers, which makes it really exciting for us we get to look forward to watching him continue to catch up!

He also LOVES school and since he is only 3 still he is in a class with only other kids with special needs. Next year he will move to an integrated classroom, but we love the school and the team he has right now and he is thriving there so it takes some of the burden off of me since I trust them with Lane and his needs!

Not to be outdone but her brothers, Elyse is keeping us on our toes and giving us grey hairs!! She has such a fun personality and adds so much to our family. Such an unexpected and undeserved blessing but we are so grateful! While the boys are at school, sissy and I are busy doing mommy and me gymnastics, bible study, grocery shopping, and constantly chasing her around. She literally never stops! 

Life is good, Life is busy, But life is also hard. 

We are smiling and laughing and relying on each other to get through. God has entrusted us with these kids and we have been lucky to witness some of the most amazing miracles happen in them. We grow through the tough times and the grief that comes with their struggles and challenges. And try to find joy that comes on this Unexpected Journey.

.the doctors.

We just got back from a whirlwind trip to Los Angeles and I feel like everything that happened was all kind of surreal.

A few weeks ago our short film Joubert Syndrome: The Unexpected Journey was picked up by the Love What Matters Facebook page. This was a big deal to us because that page in particular has over 2.6 million followers and people that view the page. What a great platform to raise awareness worldwide! And so far there have been over 66k views of our video!

Shortly after that, a producer from The Doctors TV show reached out to us to see if we would want to come on to raise awareness and have a national platform to share our story. We jumped at the opportunity, and before we knew it, Nick, Parker, Lane and I were on an airplane heading down to LA. We left Elyse with grandma for the weekend since we wanted to make sure and focus on the boys and their needs during the trip.

These Ninja Turtles came in clutch on the airplane!

Layover in Portland on the way down.

We've felt a passion and a calling that God has given us a story to share and whatever doors he opens to do that, we would follow. Not only are we wanting to bring awareness to a rare genetic condition, but also hope to people facing unexpected circumstances. We all have things in our lives that are different than we imagined or "unexpected" if you will, and we feel that it's important to share that there is good that comes from the unexpected and hope through it all.

So the night before we left, we were packing and I looked at Nick in such a surreal moment and said "Is this really our life?!" It just seems like we have been wanting something like this to happen for so long, that when we were really doing it, it felt so surreal!

Breakfast our first morning. Coffee Bean & Tea Leaf is my fav!

All snuggled up!! The boys shared a bed the whole trip and did amazing!!

They put us up at the Hollywood Roosevelt hotel, which is a hotel right in the middle of Hollywood. The sidewalk outside the hotel is literally the walk of fame with the stars in the walkway and a lot of the iconic Hollywood places are right there. You could even see the Hollywood sign from our room. That was all pretty fun!

View from the window

Exploring Hollywood

I have to say though, Hollywood in general is pretty underwhelming. It's all very close together and packed and a lot of the production and things that you see on TV are not nearly as glamorous in person as they are on TV. But we enjoyed the novelty of it all and a chance to have a once in a lifetime experience.

Outside our dressing room

Behind the scenes in our dressing room

The morning of the taping, we were picked up in a van and got to the studio a few hours before taping. Hair and makeup came in to touch us up and make things look good for TV, wardrobe came and grabbed our clothes and got them ready, and then we signed papers, talked through the script and got mic'd up for the segment.

Even Nick got makeup!

touch ups!

Had to get a close up of my Stella & Dot I rocked on the show

I have to say, when they mic'd us up, I felt like that was the weirdest thing ever. Like we were so official or something! The boys even got mic'd up with these little bitty mics..it was pretty cute! The boys did pretty well with all the people coming in and out and were surprisingly calm and cooperative with all the commotion.

With my handsome Lane!

Parker getting mic'd up

Auntie Hannah keeping the boys entertained

They took Nick and I out a few minutes before our segment and the boys stayed in the dressing room for a few more minutes. Luckily, we had my sister in law Hannah there with us so she stayed with the boys and was a familiar face. 

All ready!

Selfie!

Walking on set was crazy but I never really got that nervous. I kept thinking I was going to get super nervous but I really had such a peace about everything. We met the doctors who were going to interview us and we got in our seats, and before we knew it the audience was clapping and we were starting. We were probably out there for about 10 minutes but it felt like 10 seconds. The time flew by and there were some pretty great surprises and generous donations to us and the foundation. The segment focused a lot on hope and staying positive despite our unexpected journey as well as on the specific therapies and equipment the boys need n a daily basis. 

Just a preview of some of the surprises!!

As soon as we were done, we took some pictures, packed our bags and were headed back to the hotel. We had some friends come up for the taping and we all went out to dinner after and then spent a few days after with family and friends in the area.

We loved our experience and are so thankful to have had this incredible opportunity. Nick and I love being able to do this together and cannot wait to see what the future holds for us and the boys as we continue our journey.

The show will air this Thursday, February 25th. You can go to http://www.thedoctorstv.com/local-listings and enter your zipcode to find out what time and channel it will be on in your area.

Thanks to you all for following our journey and supporting us through it! 

.continuing on the journey.

Just when I think that I've kind of figured out how to navigate this journey we are on, we get thrown a curve ball and I feel like we take a few steps back.

The past few months have been unbelievable for us. The boys have made so much progress and are hitting milestones we have always dreamed about. I knew in my head they would start to walk eventually, but I couldn't let myself believe we were as close as we are because I didn't want to put unrealistic expectations on them. 

And just like that, they have started standing on their own and walking. It's the craziest thing to me! I still feel like it's almost an out of body experience when I look over and see them walking without assistance. It's pretty amazing that I get to witness this miracle every day. And trust me when I say I will never take this sight for granted. We have worn out our knees praying for this day, and spent countless hours in therapy offices, on horses, in pools, etc. Doing anything we could to help them get to this point...and we are finally here!!!

It will still be months before they are completely walking without their walkers, but I just can't believe that they are even close to that!!

And with the excitement of their development the past few months, I have felt such a peace and gratitude for everything we are being blessed with. A reassurance that all of the boys and our hard work is finally paying off, and us trusting in God's plan is reaping some very physical and tactical blessings.

But then this week we were thrown a curve ball and I still haven't been able to fully accept or process through it all. I try to keep my expectations realistic and know that there are going to be some really tough doctors appointments and stuff the boys are going to face. I know the reality that they could very easily have kidney failure or transplant, liver issues, and retina deterioration or blindness. These are all a really ugly and unfortunate reality of Joubert Syndrome, and many kids have and are dealing with these situations right now.

So when we went to their yearly eye doctor appointment, I went in knowing that there could be bad news. I actually tend to get really nervous the night before and lose my appetite and can't sleep. So I had prepared myself that there may be some findings with the retina and was worried specifically about Parker because he had failed his eye exam with the school nurse.

The boys cooperated well and have become pros at all sorts of doctor appointments. They listen well, cooperate and the doctors and nurses always fall in love with their charm. 

I was so happy to hear that Parker's eyes look great and have dramatically improved and his eye sight is great and he adapts really well despite the other eye issues he is dealing with (nystagmus and strabismus). But I was so caught off guard when the doctor was really concerned about Lane. His eyes had worsened significantly since last year and has astigmatism (basically the curve of the eye lens causes images to be distorted). The astigmatism is not the same in both eyes, so he is tending to use his right eye much more than his left. Left untreated this could lead to some pretty serious issues and most likely would lose vision in his weaker eye. So they are putting Lane in glasses and hoping we can treat this early so that he has the least amount of issues in the future. 

My sweet baby Lane is getting glasses.

And I'm not sure why, but I am kind of devastated over it. And it's actually not devastating at all, but for some reason it is to me right now. 

I had prepared myself that there could be issues with the retina, and I had prepared myself that most likely Parker would need glasses, but I had never even entertained the idea that Lane would need glasses.

And the reality is, the biggest blessing in the world is that their retinas are healthy and show no signs of deterioration! And another huge blessing is that Parker's eyes are doing great and there is nothing to worry about with him. So I'm not sure why I am so distraught that Lane is going to wear glasses. I absolutely LOVE little kids in glasses and it melts my heart when I see little kids with them on. Like seriously I kind of am obsessed with kids in glasses. And we know a ton of beautiful and adorable children who wear glasses and are doing great!

So why is it such a big deal to me that Lane is going to be wearing them?? If anything I would have thought my reaction would have been excitement because I just adore children in glasses. But I guess I just keep thinking that it's one more thing to add on top of everything else.

One more appointment, one more medical expense, one more thing that is going to have to deal with, one more thing to make him different than his peers, one more reason to get bullied and picked on, one more thing to overcome.

And I hate that my mind goes there. I should be happy we found this so early and can work on getting his eyes stronger. And I should be happy because {hopefully} the glasses will be a huge help and he will be able to function at full capacity because he has the tools he needs.

But I can't help but say I am sad. And having to process and mourn through another unexpected turn in our journey. I'm still wrestling through this with my faith and why we have to live in a continual state of surrender. Why when things are going so well, we have to take steps back when we already have so much to overcome. 

I know *intellectually* the answers to these questions, but my heart and emotions aren't there yet. With time and growth and maturity I will get there. And I guess that's what this journey is mostly about anyways. My expectations and how God is using the boys to change my plans and use them for His purpose.

Stay tuned for a picture of my cutie rocking some shades in a few weeks!!