When I named our blog "The Unexpected Journey", I had no idea just how unexpected this journey would be. Having one child with special needs was definitely unexpected, but having two children with special needs was almost unfathomable to me. I would have never imagined that this is how my life would play out.
Yet here I am, the mother of two beautiful and precious boys with Joubert Syndrome.
It still doesn't seem real to me. I still have a hard time believing that Lane was officially diagnosed with Joubert Syndrome. I had imagined his life so differently, yet here he is facing the same obstacles that Parker is facing.
My pregnancy with Lane was such an unexpected blessing. Given the fact that we knew our chances of having another child with Joubert Syndrome was 25%, we had not decided if we were going to have any additional biological children. Yet, here we were in February of 2012 with a positive pregnancy test, and tears filled with joy. Although there was a chance this baby could be affected, we were ecstatic and knew God had given us this blessing.
During my pregnancy, we went through all of the necessary pre-natal testing and all of it showed that Lane's brain was fully developed and showed no signs of Joubert Syndrome {the most common sign is an underdeveloped cerebellum}. Although all of the doctors confirmed to us that this baby was unaffected, both Nick and I said that we were "cautiously optimistic". That although it might show that this baby doesn't have it, we couldn't quite believe it until we saw it for ourselves.
I think God was preparing me. I think deep down I had an unsettled feeling. Call it paranoia, being overly concerned, whatever, but I just had a hard time believing that we were going to have a typically developing child.
With Parker I NEVER expected having a child with any disabilities, and so I was completely blindsided with his diagnosis, and I think I was afraid to let myself be vulnerable to that thinking again. If I let myself believe that this baby was unaffected, and then ended up being diagnosed, I would end up being blindsided again.
So I never fully let my guard down, in hopes that if Lane ended up with JS, then it wouldn't hurt as bad. {As if that is possible}
Although Lane's birth was somewhat traumatic, he came out healthy and happy and we were in seventh heaven. And he has continued to remain our healthy and happy little guy.
But slowly and surely, he started to miss developmental milestones. He was quick to roll over and did awesome with tummy time, but was slow to sit up, wasn't bearing much weight on his legs, and wasn't getting on all fours to crawl.
I kept getting more and more concerned. But it was so different than Parker, that I kept hoping he would just catch up.
But as time went on he fell further and further behind.
I remember the date specifically when Nick and I looked at each other and we both knew.
We knew that Lane had JS as well.
It still hurts to think about it, but I brought it up to Nick and we both just kind of locked eyes and let the walls down. What we had both been trying to ignore was reality. We both saw it and knew.
We hugged each other, we bawled like babies, prayed, and sat in silence trying to process it all.
But in the midst of all of this, we couldn't help but smile and think of the two beautiful boys that we have been given. Their smiles light up our lives, and the thought of that seemed to make it all okay.
In the months to follow, we had some doctors appointments and were referred to get an MRI to confirm that Lane had JS. My parents flew up from CA to be with us during that and it was just what I needed. I needed my mommy and daddy to be there as I was walking down this road again. I needed the comfort and the protection of my parents arms even though I am a grown woman with kids of my own.
We got the results later that day that confirmed it, and although we cried a little bit with the official news, I think I already had accepted his diagnosis and was ready to get him started in therapy and get him the resources he needed to excel.
More and more, Nick and I feel that our lives have significant purpose. That God entrusted us with the most precious gifts possible, and that their lives are going to change the world. It may sound silly, but we really feel that God is going to use our story. Going to use their lives for HUGE things. We can feel big things coming and its such an awesome feeling.
I have never felt that my life has had more meaning than it does right now. I am not sure what the future looks like, or how God is going to work this all out for His good, but I know that He is working in our hearts and our lives and it's amazing.
Is it tough?
ABSOLUTELY
Does it hurt?
LIKE HELL
Would I take this all away from them?
IN AN INSTANT
But I don't think this was a mistake. I don't think we were given two children with special needs on accident. God has given us them for a reason, and we are so lucky to be a part of that plan. To be the vessel that God uses to change the world through them.
Below is an email that Nick wrote to our families a few days after Lane was diagnosed that sums up where we are at and how we are feeling and we hope you all will come along for the ride of this Unexpected Journey with us :)
Hi Guys:
Over the past few days God has really been impressing something upon my heart and I wanted to be able to share with you guys. But as I was walking to my car last night, I found myself kind of dragging. Just feeling down and realizing that it feels like it's been a month of feeling like we are getting our butts kicked, repeatedly. At that very moment, God spoke to me and the only thought that kept running through my mind was, "You need to bring more joy into your life". And as I walked to my car, during my car ride home and the brief time I spent at the golf course (my outlet), God really began to unpack this for me. Joy is not something that happens to you, it is a conscious decision. God reminded me of the countless times and circumstances He has been faithful in our lives and the lives of those who are close to us. Events and circumstances that seemed so "unfair" at the time that turned out the be some of the best things that ever happened to people. Regardless of what the events were, God met us and the people around us and ultimately we all grew, in character and most importantly in our relationship with Jesus. I found myself asking the question why I was so devastated with Lane's diagnosis. Did God make a mistake? Did Anna and I make a mistake? Was there something we could have done differently? The answer to all of those was a resounding, "NO!". As I processed through this, God began to impress on me that my devastation was a result of my own expectations not being met. Some of the dreams that I have as a father of things to do with my sons may never come to fruition. But ultimately, these are my own selfish desires. These are things that I wanted for my kids. Not that it is a bad thing to have those desires, but who am I say that God is wrong because He does something differently than I wanted him to. That is a very arrogant position for me to be in. I am very selfish by nature (I know, HUGE shocker :) if you need confirmation, just ask Anna), so it took God to remind me that what's important right now is not my dreams and desires for my kids, but what God has in store for them. My definition and view of what "normal" is and what life should look like for them is so narrow and limited. God is slowly unpacking that for me. But as we go forward, I strongly felt God pressing me to make a conscious decision to be more positive, more joyful. To celebrate the incredible gifts of Parker and Lane. This is not something where I'm trying to stuff this down and pretend it's not painful or difficult. There are going to be some very difficult days/times ahead. This is not putting on a face to mask the pain. As our pastor at Eastlake used to constantly say, "Right feelings follow right actions, not the other way around". We don't feel something and then start to do it. We begin by taking steps and the feelings follow. We do have an active role in how we feel. It is a decision. We can allow our circumstances to dictate our feelings, or we can be in control of our response. As a father and leader of my family, I choose the latter. Will be there be challenges, times of pain and lots of tears ahead? Certainly! But we serve a God who is bigger than all of this. We serve a God who wraps His arms around us and carries us through the manure of life. I choose to stand on that promise. I choose the hope and joy that only God provides. And every time I see the huge smiles and "happy feet" from Parker and Lane, I can feel the warmth of God's embrace. Thank you guys for all of your support. We know you all will be right by our side as we walk through this journey.
Nick
