.the very unexpected journey.

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

.baby lane at 8 months.

Dear Baby Lane-

Wow! I can't believe you are 8 months old already!! It seems like you have been a part of our family forever and I cannot imagine life without you. Your sweet spirit and laid back personality add such a fun dynamic to our house.

God definitely knew I needed a laid back and easy child after all we have been through with your brother.You have been such an angel to me and just go with the flow no matter what! You get dragged to all of your brothers therapy sessions, grocery shopping, errands, running with me in the stroller, and everywhere in between.

Your sleeping has been less than stellar but you are really only waking up once a night to eat now and I kind of like that time alone with you. It's just you and me in the middle of the night, in the quiet house and you nurse quietly for a few minutes and then fall back asleep. Although I am looking forward to you sleeping through the night, I know this time won't last forever, so I am choosing to look at this positively.

I am trying to savor each and every milestone and moment with you as you will most likely be our last biological child. Each size clothes you grow out of and each new thing you achieve must be both mourned and savored and I try to hang on to each of these things and remember them forever.

You are my serious little baby and you make us work hard to crack a smile. I think it goes with your laid back personality that not much impresses you and you just kind of like to take it all in.

Your older brother loves you a whole lot. Sometimes too much! He always wants to be close to you and touching you or trying to get you to play with him. We try and teach him to be gently and "softy" with you, but most of the time he ends up being a little too aggressive and I spent most of my day trying to protect you from him :)

It is so sweet to see your relationship develop. The way you look at each other and as you are getting older and more interactive I cannot wait to see you two become best buds. Having you two close in age is sometimes difficult for mama but is so worth it. You guys are going to have a lifetime of memories to share and I love that already.

As easy of a baby as you have been, you have also given me my fair share of things to worry about. Because of your brother having Joubert Syndrome and being delayed in his milestones, I have been hypersensitive to you meeting your milestones and am always watching you like a hawk to make sure you are developing on time and correctly.

You've decided to take your sweet time with meeting your milestones and have even been at the tail end of the "normal" spectrum when it comes to sitting, crawling, standing, etc. But we are working on it and you are getting there. Maybe not as fast as I would like, but you are making progress and getting stronger.

I still worry about you, and although there isn't much to worry about, there have been a few things to cause concern and it makes me worried. I think God is just trying to get me to fully rely on Him through this whole parenting thing, because he likes to bring me to that place of desperation. I have to remind myself to enjoy watching you grow up instead of worrying about your next milestone and if you are falling behind. I know that God created you perfect, just like he created your brother perfect and we love you guys no matter what!

I love that I get to stay home with you and your brother everyday and spend our days experiencing things together and creating memories. And although there are days that being a stay at home mom makes me a little crazy, I wouldn't trade it for the world and am so grateful for this opportunity.

I am excited for the fall when your big brother starts preschool because we will get some one on one time. Although it is going to be very sad for me to send Parker off to school, I can't wait to have a few hours a day with just the two of us. Just some mommy and Lane time.

You are our miracle baby and we are so lucky to have you. So thank you for being such a blessing these last 8 months and I am so thankful to be your mommy. I can't wait for all that lies ahead.

Happy 8 Month birthday sweet boy!!

.spotlight.

Today we have the wonderful privledge to be featured on the blog This Little Miggy. Every Friday she does a special needs spotlight and this week it is about us and our journey with Parker.

Check it out...


http://www.thislittlemiggy.com/2013/05/special-needs-spotlight-parker.html

.triumph.

One of the coolest things about having a child with special needs is that everything they achieve is a milestone. Sometimes the most simple and mundane things to most people are an absolute celebration for us! Seeing your child struggle and then accomplish what they set out to do brings such a sense of joy only few can understand.

I am happy to say that we have had a lot of amazing days over the last few months and Parker has blown me away with the incredible progress he has made. We still have our struggles, and each day has it's difficulties, but that pales in comparison to watching him grow and develop.

Parker started to crawl in November. It was a very unsteady crawl and he grunted and huffed and puffed his way through it, but I will never forget taking this video with tears in my eyes not believing what I was seeing. I still grin from ear to ear watching him crawl for the first time. Amazing.

After he learned to crawl, it was no turning back!! This kid had learned how to be mobile and was on the move. He has loved his new found freedom and being able to get to where he wants.

Parker has always understood us much more than he could communicate back. He would listen to us and respond to what we were saying, but wouldn't necessarily use words. All of the sudden in January it was like he just decided one day to talk.

And he hasn't stopped since!

The kid is a chatterbox and is always talking, copying, or jabbering of some sort. He even says "I wuv uh" which brings tears to my eyes every single time. We weren't sure Parker was ever going to talk, and now he is saying I love you. Unreal.

He has mastered a "downward dog" type pose and even crawls in a bear crawl type fashion. He also pulled himself to standing on the couch for the first time about a month ago. Just a few months previous I would have never imagined this milestone would be just around the corner.

And with the help of his foot orthodics, he is standing stronger than even and even standing unassisted for a bit.

And with the help of his amazing physical therapists, he is starting to take steps and learn how to move while standing. They work him so hard and he is so exhausted after every session, but he is making so much progress it is awesome to see!

We bought a potty the other day to attempt to start on this whole potty training business, and instead of using it for a potty, we used it as a seat to work on standing. He thought this was so much fun and wanted to do it over, and over, and over again. I loved watching his determination and then the sheer joy on his face when he would stand, each and every time!

2 years ago when Parker was diagnosed, we were told he may never walk, talk, or do much at all. That because of his muscle tone and all the aspects of Joubert, that he would eventually hit some milestones, but that he would be very uncoordinated and unable to do a lot of things.

I have been blown away by how much Parker has accomplished in just a few short years and cannot wait to see the day that he comes walking towards me. God has been so good and breathed life into this body of Parker. I pray we never go a day thanking Him for each and every milestone Parker has reached.

.disclaimer.

Honestly, this post is extremely hard for me to write. It exposes some of my biggest flaws as a special needs mom and will probably offend some people, but it is on my heart today and I just need to write through it.

Mom's in general are always comparing their children. Which kid is sleeping through the night; who is eating solids first; sitting up; walking, etc. Not only do mom's compare the milestones, but they also compare co-sleeping versus independent sleep; breastfeeding versus formula feeding; organic food versus not. It's an endless vicious cycle that unfortunately most get trapped in. As if somehow these achievements of their children or what they are eating or how they are sleeping equates to how good of a mom they are.

When Parker was first born, I was constantly trying to keep up. To make sure I was doing everything right, that he was only getting breastmilk and we were sticking to a schedule for sleeping. Because if he wasn't sleeping through the night by 6 weeks old then I was a bad mom. Which of course, is a lie. But as a first time mom, it's hard not to listen to all of the "noise" around you about what makes or doesn't make a good parent.

When Parker started to miss milestones I began to panic. Was it something I was doing wrong? Is it because I am back to work and he is in daycare that he still isn't sitting up? etc.etc.etc.

All of these things kept going through my mind. I was doing everything by the book. Everything all the "experts" said and it still wasn't working. I was failing as a mom.

After our pediatrician recommended we see a neurologist just to see if there were any concerns, my entire world fell apart. He did think there was something wrong, that he thought there was reason to believe he had a brain malformation and that we needed to do an MRI.

Of course, they did find a malformation and Parker was diagnosed at 7 months with Joubert Syndrome, and that plagued me with guilt.

Joubert Syndrome is a malformation in a gene that both Nick and I have. It's seriously a 1 in a million chance that everything would work out the way it did, and it all comes down to genetics, but I still struggle with mommy guilt over this.

I struggle with the fact that maybe if I ate more leafy greens when I was pregnant, then Parker would have gotten more folic acid and maybe that would have helped. Or maybe if I took more prenatal vitamins, ate only organic, drank more water, etc. then he would have been spared from this horrible genetic condition.

Maybe it's all my fault.

And I know in my heart that God created Parker EXACTLY how He is and that there is nothing I could have done to change this, but I still struggle to actually believe that there isn't something...even a small something that could have given Parker an easier chance at living a life with less struggles.

And now even though we have been on this special needs journey for 2 years now, I feel the need to give others a disclaimer whenever we meet someone new.

Like.."Hi, I'm Anna and my son has special needs."

As if it is something that others need to know immediately. I think I say this as a defense mechanism. That I feel its necessary to tell them so that they don't have a chance to judge me or Parker.

I know other people in the special needs community would not think this is okay that i feel it necessary to tell others...but I think if I tell others first, it allows the sting of rejection or judgement to hurt a little less. Like it automatically takes us out of the competition for "what is your child doing" and let's people stop trying to compare.

That even though I know my child is different and not "typically" developing, that I have to justify to others...sometimes complete strangers why he is delayed. And I don't even know if those mom's are even looking at Parker or wondering anything about him.

But its like word vomit. It just comes out.

And this haunts me. Why do I still feel the need for others approval? To be accepted?

I think part of it is human nature, but I still hate that I always need to "disclaim" the fact that we are a special needs family. Part of it is good as it opens up the possibility for conversation and others feel comfortable to ask questions, but part of it is a defense mechanism for me. To make it hurt a little less. To address the issue before it's even brought up.

So many times I feel inadequate. I feel like I have no idea what I am doing as a mom. Am I doing it right? Am i giving them the best chance at a successful future?

I don't know.

But I do know that I am trying. And I am a work in progress. Each day is a new journey and despite all of my weaknesses and short comings, I am trying my hardest to be the best mom I can to Parker and Lane.

.perspective.

I used to be a pretty avid runner. I ran track in high school and then continued to run on my own nearly everyday, participating in my fair share of 5k's, 10k's and a half marathon. When I got pregnant with Parker I even ran until I was about 5 months pregnant. Running was easy for me...I didn't really have to think twice about it and could run 5 miles without it being too difficult.

Then Parker was born, I went back to work, he was diagnosed with Joubert Syndrome, and everything kind of changed.

I was no longer able to carve out the time to run due to working full time, balancing dr appointments, therapy appointments, managing the household, etc.

Call it an excuse- but I was just too emotionally and physically exhausted from merely surviving this new journey we were on that running didn't even come close to being a priority anymore.

Since Lane has been born, I am now staying home with the boys, and we live near family, I decided that this year I want to run a half marathon to prove to myself that I can do it.

That despite the crazy rollercoaster we have been on the last few years, that my body is physically capable of pushing itself to train and run 13.1 miles again.

Before my training for my half marathon I ran in 2009 was somewhat effortless. I didn't have to push myself very hard. The miles came easy and I was able to finish the half marathon without a problem.

This time...

IT. IS. HARD!!!

I am having such a hard time training for this half marathon. Each mile is so painful. I have to psych myself up before each run and while I am out running I literally have to keep telling myself to just put one foot in front of the other.

I want to give up. I don't want to willingly put myself through this tough training.

But then I sit through Parker's physical therapy where they are trying to teach him to stand on his own and learn to walk and I keep thinking of how often I take that for granted.

Take for granted the fact that I have the gift of being able to walk, to run, to move my body exactly how I want to without any limitations.

Parker works his little booty off 3 days a week in physical therapy and occupation therapy teaching him to do the simple things that I take for granted.

And this has inspired me to continue pushing forward with my training.

Will I still dread each of my runs?
Probably.
Will I still feel like I want to puke during the long runs?
Most likely.

But I will always have the reminder in my mind of how hard Parker is working. And if he can work as hard as he is and continually make progress despite all of the odds being stacked against him.

Then I can finish out that last mile.

Perspective taking can make the world of difference and for me, the simple act of training for this half marathon has been a challenge, but with Parker as my motivation I know I will cross the finish line with his beautiful face in my mind!!

Here are some pictures of Parker in therapy and what he is learning....

.lane nicholas dietzen.

If I have learned anything from parenting, it is that nothing is in your control. And Lane's birth and arrival were no different!

I went to the doctor on September 27th and was already dialated to 3.5cm and almost completely effaced. My OBGYN told me to just monitor my contractions becuase the baby was going to make his appearance anyday. That weekend, I had some tell tale signs of labor and was sure that he was going to come. I had been having contractions on and off for the last few days and was sure that they would just keep getting stronger. But with each day that passed, there was no signs of active labor.

At my dr appointment on October 5th, I was still dialted the same, but was told that I was in early labor and that the baby would probably arrive over the weekend. I started my maternity leave on the 5th and my mom flew in that day so she could be there for the birth of baby boy #2.

And so began the waiting game....

And waiting...

waiting...waiting...waiting...

Until October 18th!! Almost exactly 2 weeks later Mr Lane decided to make his appearance to the world.

I had a due date range due to having a high risk pregnancy and that was from October 5th-14th, so I was not considered overdue by the hospital until after October 14th. I really did not want to have to be induced and wanted my body to go into labor on its own, but once the 17th came, I knew I had no choice.

My dad was leaving two days later and my mom would only be here for another week and I needed the help with Parker when the baby came. So we scheduled my induction for 6:00am on Thursday October 18th.


I woke up at 1:00am with strong contractions and they kept progressing pretty quickly. Within an hour they went from 15 minutes apart to 2-3 minutes apart. We called the hospital and were on our way.

We got there at around 2:30am and was dialated to 4.5cm. Things were going smoothly and I was so excited because I didn't have to be induced!! My body was doing what it was supposed to on it's own.

I got an epidural about 3:30am and then tried to get some sleep. However, they kept waking me up to have me turn sides and try different things because the baby's heart rate kept lowering. This happened with Parker too so I wasn't too worried.

They broke my water at about 4:15am and from there things got a little intense. Baby's heart rate kept going up and down and we couldn't get it to stay at a consistent rate. We tried everything...I was even on all four's {with an epidural!} trying to make it so his heart rate went up. They put a heart rate monitor on babies head, tried to put a saline balloon in the birth canal to create a cushion from the cord, and even had me try to push even though I wasn't dialated to get this baby out.

I was already at 9cm by 6:00am and the baby was going to come anytime, but his heart rate just kept dropping and it was getting to be dangerous. We waited another 30 minutes to see if he would come on his own, but the heart rate was dangerously low and we knew it was time. We were headed to the OR for a c-section.


This was not part of my plan and I was pretty bummed to have a c-section, but I was so concerned about my baby boy and just wanted him out! I wanted him to be safe and free from any stress or complications.

I was wheeled into the operating room at 6:30am and by 6:59am our beautiful healthy baby boy was born.

The c-section was actually pretty easy, besides the fact that there were a million people in the room and I was so nauseas and kept throwing up. They explained everything to me and made me feel very comfortable. Nick was right by my side the whole time and was taking pictures of the actual surgery and everything {my request}. I knew I would want to look back on this and see what happened.

Once they got Lane out, they told me they would hold him up for me to see him, but that never happened. They immediately took him over to the warmer and a team of nurses started working on him right away.



He was 7lbs, 12oz and 21 inches long with dark brown hair and blue eyes.

The cord was wrapped very tightly around his neck twice and his APGAR score was only a 4 when they pulled him out. This is why his heart rate kept dropping while in labor. Because the cord was so tight and the way he was positioned, he would never have come out vaginally, and it is a great thing we went for the c-section when we did.

I remember laying on the operating table and looking over at the nurses working on Lane and not being able to tell if he was okay. No one was telling me anything and all I could hear was a few of the nurses saying "come on baby, come on". I started tearing up then. I just wanted me baby to be okay.

Finally after FOREVER...okay it was only about 5 minutes. They came over and explained everything to me and that he was okay, he was breathing great but that they wanted to take him to the NICU to monitor him for a few hours. I sent Nick with baby Lane and they went up to the NICU while I was sewn up and brought back to my room for recovery.

Once I got back to the room, my mom was there and they allowed me to just rest. After being up all night laboring and then having a pretty traumatic birth, I was exhausted and needed some rest. I was able to sleep for about an hour before the nurse came in and explained everything with Lane and that his APGAR score was a 10 {where you want it to be} by 10 minutes after birth and that they were ready to send him down to me if I was ready.

I couldn't wait to meet my baby boy and have my husband back with me. They brought Lane back to our room and I was able to cuddle him and nurse him and get a chance to bond with my little boy. I was just so thankful that he was okay, that I was okay, and that everything was over. We had our slew of visitors and hospital checks, but I was so tired from everything that I really just needed to rest.

What I did not anticipate with having a c-section was the recovery. Man is it tough! I was so tired, in pain, and couldn't move. The hardest part was that I couldn't sit up on my own. I had to either grip the sides of the bed and pull up, or have someone help me. I couldn't get up to grab Lane from his little crib or even get up to brush my teeth or go to the bathroom.

That first night was tough as I was so itchy from the anesthesia I wanted to crawl out of my own skin and I was in a lot of pain from my incision. They had me stand up and try to walk to the bathroom that first night and I thought my insides were going to fall out. I almost passed out while going to the bathroom and after that decided I would just stick with laying in the bed for a while :)

Recovery has been tough. You are not able to lift anything heavier than your baby for the first 4 weeks and then after that nothing more than 20 lbs for a few weeks after that. But since I have a special needs toddler who cannot walk, I have to carry him everywhere. He is 28lbs of dead weight.

So after Lane was born, Nick's parents took Parker to Spokane with them for 9 days while my mom stayed with me and helped me with Lane. I was super emotional about Parker leaving. Like I was failing as a mom of two already because I couldn't care for both of my boys at once. But I physically couldn't, and knew it would be best for me to try and recover while he was having fun with his cousins and grandparents in Spokane.

Adjusting to life with two hasn't been as hard as I thought it would be. Sure it presents its challenges since Parker cannot walk or talk, but I have never been more content or in love with my little family. We are so blessed and although Lane's birth was a little different than I had planned, you just go with the flow and adjust along the way!