.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.