.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!

.blessed.

This is something that Nick and I just recently shared with our families as we just got a glimpse of how God has used this journey in our lives. Thought I would share it with you all as well....


A few days ago we had the chance to meet with the head pastor Richie Shaw from Real Life Ministries (the church we are thinking about attending here in Spokane). It was just a real casual meeting but we just both kind of shared our stories, learned what the church is about and where they are headed and were able to ask any questions we wanted.
One of the things Richie asked us was what our journey has been like through Parker's diagnosis. Usually as soon as someone asks me, I get very emotional and have a hard time formulating my words because I am too busy trying to keep myself composed. Yesterday I started to get emotional but asked The Lord to give me strength to really share-and he did just that :) Nick did most of the talking, but I was able to clearly put into words some of my experience and it felt great to be able to share.
After we finished telling our story Richie shared some powerful words with us that kind of helped me have an "A-Ha" moment with this journey. We have never doubted that we are some of the most blessed people around. Despite his challenges, Parker brings so much joy to our lives and is so special that I cannot imagine a single second without him. His placement in our family is nothing short of a divine miracle and we are so blessed by him.
But what really spoke to me was when Richie said that a lot of people would be jealous or envious of us.
I have never thought that someone would be jealous or envious of our experience. This experience has been the hardest thing we have ever had to endure and not a day goes by that we arent faced with heartache and desperation as we are still navigating this special needs life.
He continued on with stating that a lot of Christians and people in general spend their whole lives LONGING and YEARNING for that deep intimacy with God. They search and try to find that deep connection with Jesus.
But God has chosen us to have that glimpse. We are the lucky ones that God has opened up a little more of himself to. We have seen a more intimate side of Him that only comes out of complete and total desperation. We have seen the body of Christ come together to lift up our family. We have gotten a chance to really connect with Jesus on a level that most people spend their lives searching for.
I spent a lot of last night mulling over this and felt so humbled and blessed that God would choose US to reveal that side of Him to. We are so unworthy to have that deep relationship with Him, but through our amazing son Parker, He has given us that opportunity.
I know we have plenty of learning, growing, and desperation that will happen in the future, but being able to get a glimpse of God's plan through this situation has been nothing short of amazing.

.impact.

We all have the ability to impact others. Big or small, we all have the choice everyday to make an impact on others lives.

Good or bad.

I never really understood this or came to the full realization of what this meant until having a special needs child. The impact others have on my son's life are HUGE and they can either be life changing in a good way, or life changing in a negative way.

Unfortunately, a few weeks ago we had an incident at church where I was told I could not drop Parker off because he is more work.

This impacted me. Greatly. But not in a positive way.

It's taken me a few weeks to really wrap my mind around everything that happened. Why it happened. And to really allow my heart to heal and not form scars, build up walls, or fill with resentment.

I know that the volunteer who spoke those words to me did not do it maliciously, and was really only telling me because they were short on volunteers and did not have enough people to help. But to single out a special needs child, while there are plenty of other children who were just as much work or more, really hurts.

It hurts deep.

I know that Parker is different. I know that we are a different family because we do not fit into the "regular" or "typical" category. But those little reminders are like a punch to the gut.

They reinforce the constant fears..
"You don't fit in"
"You are not as worthy as a typical family"
"Your child is different"
etc. etc. etc.

Parker will not remember this experience or be hurt as a result of this.

But I was. I was impacted greatly by just a few words.

And that's all it takes sometimes. Is just a few words to reinforce the fears that we try and run from . And then the battle begins again to try and overcome those and get back to a healthy place.

Fortunately we have had so many positive experiences of people accepting and loving Parker since he has been born. In fact, we have had many more positive experiences and impacts made than any negative ones.

But unfortunatley, just like in any situation, one bad experience can outweigh 100 positive ones and it is how you grow from those negative situations that really make you who you are.

I know that we are going to have many experiences that are going to test me, push me, draw me to my knees in desperation, and absolutely break my heart....

But I am SO incredibly thankful for all of the wonderful people in our lives who have walked beside us in this journey and made such a positive impact in our lives.

You may not know it, but just a few encouraging words, hugs, smiles, etc. to a special needs family can impact them greatly. Loving on our children and treating them with love and respect, allowing them to just be who they are eventhough it might not be "normal", talking to us like normal human beings....these things make such a large impact in our lives.

They allow us to overcome the bad experiences.

They help to heal our hearts and break down the walls.

They make us whole again.

From the bottom of our hearts, thank you to everyone who has had such a great impact in our lives and loved not only us, but loved our precious Parker as well.

.life.

Therapy. This blog is my therapy. It originally started to update our family on our lives, but after Parker was born and we started navigating our way through the special needs world, this became my outlet. It has allowed me to work through all of the things going through my mind and really helps me to process it all.

The past few months have been busy to say the least. We welcomed Lane Nicholas Dietzen into our lives in the middle of October, we celebrated Thanksgiving in Spokane, Christmas in California, I quit my first professional job that I have had straight out of college and worked at for 5 years, packed up our first home that we brought both our babies to and moved to Spokane, all the while adjusting to life with a newborn and the everyday needs and challenges that a 2 1/2 year old brings.

To say that I have had a lot going on and a lot swirling in my mind is an understatement. I have wanted to put things into words, but have felt so overwhelmed by everything and so exhausted that by the time I have a free second to blog, it is the last thing I want to do.

For the most part things have been great! Lane is a beautiful and perfect baby and we are so thankful for his sweet spirit in our home. Parker is doing wonderful! His speech has taken off like crazy, he is now able to somewhat communicate to us his wants and needs, he is crawling like a maniac and amazing us everyday at his progress. We now live near Nick's family and have extra hands to help with the kids as well as be there for us, and I now have my dream job of being able to take care of the kids and stay at home with them.

But I would be lying if there haven't been there fair share of tears over the last few months as well. I quit my job and it is the first time I have been unemployed since as long as I can remember. I always worked a job here and there and had been at my job for almost 5 years. I was dying to stay home with my kids but it was still very surreal to walk away from something that I was good at, that allowed me to have an outlet and develop my professional skills, and it was hard to no longer have something to work towards and achieve outside the home.

Don't get me wrong, staying home with my kids has been a dream of mine since before I had kids, but it was still emotional for me to make that final decision that I was done. The past few years of working were some of the hardest years, trying to balance work and home life as well as therapy appointments, dr appts, specialist appts, etc. was a very difficult for me. I felt like I was always being pulled in 100 different directions and never able to really give anything 100%. I am so thankful now that I am able to really focus on the boys, Parker's therapy, advocating for him, watching Lane grow, and enjoy all that staying home entails.

Packing up and leaving Seattle, the city we first lived together after we got married, our first home, where we had both of our children, our amazing church, our community, etc. was hard as well. It was almost a good thing that it all happened so fast because I didn't really have a chance to feel the emotions of it all. We loved our time in the Seattle area and made some amazing friendships and had an amazing church, but it was time for us to be near family and to have help. The last few years were pure survival for us, just taking things one day at a time and getting through. But Nick was given the opportunity to move positions within the same Accounting firm and this new position allowed us to move to Spokane and be near family and so we felt that this was a great opportunity for us to be near family. However, this also leaves us torn because although we are close to Nick's family and we love it, we are still far away from mine and its hard to not have everyone in the same place.

We went to California for 2 weeks at Christmas and it took everything in me to get back on the plane. I have always appreciated my parents, but after you have children, you appreciate them ten fold. I long for my children to live near my parents and for me to have them nearby and I pray that someday we will have that opportunity.

The move to Spokane has been an easier transition than I had expected. Things have gone well and it is so nice to have people around all the time. However, we have experienced some big road bumps with getting Parker therapy services, as well as a situation at church where they wouldnt allow him to be dropped off. I always knew that I would have to be Parker's biggest advocate and to fight for him, but I didn't realize how emotional it would be and how draining it would be.  I will do anything for him and fight for what is right for him, but its taken everything in me to continue pushing for it when all I want to do is run away with my little family and be blissfully happy. I don't want to have to listen to people tell me that my child is different, or that he is more work, or that he needs extra services or extra help. It makes me pull away and build up walls and makes me terrified to ever take him places or leave him anywhere, but I know that is not what is best for him. So i have spent my first few weeks here in Spokane on the phone fighting for Parker's therapy and figuring out my way through the special needs community over here.

We are moving along, getting settled and hoping things continue to get back to normal and into a routine. Looking forward to the spring and summer and the regrowth and renewal that it brings.

I have lots of pictures and posts from the last few months and will hopefully be up to date on this blog soon.