.dear parker derek.

To my first born baby boy Parker:

I've thought about writing you a letter every year on your birthday and have wanted to recap each year and what we have been through and learned. What you have accomplished and how you have grown. But each time I sit down to write it, I just can't.

Words seem so inadequate to express my love for you and how much you have changed me life.

So here we are, 4 years later and I am finally setting aside the time and gaining the courage to write you a happy birthday letter and tell you how much I love you.

I remember laboring in the hospital room waiting for each contraction to pass, wondering what was next and how long it was going to last. I was in pain and it was hard, but I knew that with each passing contraction, I was one step closer to meeting you. 

Your daddy was a champ and was so helpful to me while I was in labor. He stood by my side and encouraged me the whole time. He couldn't wait to meet his first born son....every man's dream!!

You were born 12 hours later weighing in at 6lbs, 15oz and 20.5 inches long. It was so surreal to finally hold you in my arms. You had a head full of dark brown soft hair and blue eyes! I was so excited to see you had blue eyes because I always wanted a baby to have my eyes. And lucky for me, your eyes are the window to your soul and I get to stare into them every day!

We settled into being a family of 3 pretty easily. I loved spending every moment with you and you made my dreams come true of being a mom. 

I had to go back to work when you were 10 weeks old and I thought my heart was going to break the first time I dropped you off at daycare. You had the most loving daycare environment and Victoria took the best care of you, but I wanted to be with  you all the time. I hated having to go to work everyday and leave you. But you gave me the confidence and strength to do it. You made me brave and would look at me like you were saying "It's okay mama, I will be just fine!"

After a few months of growing your dad and I started to notice that you weren't getting as strong as the other babies around you. You seemed to have a much harder time holding your head up and your coordination was off. We tried working with you, praying for you, and doing everything to get you caught up but it didn't seem to help. Our hearts were slowly starting to break as we realized that maybe God made you a little different, made you a little more unique than those around you.

At 7 months you had to go to the hospital to get an MRI where they took pictures of your brain to see what it looked like. They gave you medicine that made you very sleepy and mommy and daddy held your hand as you fell asleep. This was probably one of the hardest things I have ever had to watch happen as your mom. I knew you were in good hands and that the doctors would take care of you, but I didn't want to let you go and I hated that you had to get these pictures taken.

The next day the doctors called and told us that you were indeed created special. You have something called Joubert Syndrome. Your brain didn't form all the way and it has created some huge obstacles for you, but you haven't let that stop you from living an amazing life.

Since we found this out, you have been going to a lot of doctors appointments, therapies, and specialists to make sure you live the best possible life you can live. You have worked so hard for every milestone you have reached along the way. From sitting up, to crawling, to talking- each and every thing you accomplish has been a challenge, but you are determined and a fighter and you always reach these goals! You are a living miracle as you do things that doctors thought you would never do.

My heart hurts for you everyday though Parker man. I see how hard everything is for you and I just want to fix it. I see other kids your age running around and doing all the things you wish you could do and I watch as you dream of doing that. I see you get frustrated and sad that your little body won't let you do that. I see the longing in your heart to have an able body and it crushes every ounce of my being knowing that there is nothing I can do to fix it. 

You started school this last year and I was so nervous for you. You were only 3 years old and just a little boy, but you were so brave and transitioned to school like it was no big deal. You excelled in this environment and exceeded everyone's wildest expectations. You are one smart little boy! I couldn't believe the things you learned, remembered and taught us. I can't wait to watch you fly as your brain continues to develop.

You even rode the bus this year. This was a scary one for me. And I only started letting you ride on the bus home from school, but then when I found out we were pregnant with your little sister I was too sick to drive you every morning and you had to ride the bus to school as well. I hated that I couldn't drive you anymore but you kept telling me how excited you were to ride the bus in the morning. The first few days were hard but then you would ask for the bus and made that transition an easy one as well. You already showed me that you were going to be the best big brother to your little sister. It was your way of taking care of me and your baby sister. So thank you for being such a big boy!

You are already such a good big brother to Lane. You guys have your moments of fighting and wrestling but you really love him so much. You told me just a few days ago out of the blue that Lane is your buddy and that you love him. It made my heart swell with pride knowing that Lane has you to watch over him. You guys were created with the same unique syndrome and struggle in the same way and I think God gave you each other as a special gift. He wanted you both to have someone to walk through life with that would understand exactly what you are going through. You are always very concerned about Lane's safety and do not like it when he is sad or cries. I love watching your relationship grow and know that Lane is so lucky to have you as big brother!

We have our challenges and you have a strong and definite personality. But your spunk and drive are what make you who you are. You challenge me like no one has ever challenged me before. Physically, mentally, and emotionally. There are some days I don't think we are ever going to survive, but then you will crawl over to me and look at me with those baby blue eyes and tell me you love me. Or you will give me a big squeeze hug, and all else seems to melt away. It's these little moments that make it impossible for me to love you any more.

I don't think there is any area that you haven't changed my life. Because of you I am more aware of my purpose on this earth. I have a closer and deeper relationship with Jesus. Your dad and I have a stronger marriage. I'm challenged physically to not only keep up my fitness but to also advocate on your behalf and not take my physical body for granted. I am mentally stronger than I ever imagined I could be. I have more empathy, more love, and compassion for human beings in general. 

And I get to wake up every morning with you as my son. My greatest gift I could have ever received.

I want you to know how proud I am of you. How my heart beams with pride for you and everything you do. I will ALWAYS be here for you, ALWAYS advocate for you, ALWAYS do anything and everything in my power to help you live and create the best life possible. You can DO and BE anything you want to be and I want you to believe that for yourself. You are amazing, and wonderful and God created you for BIG things. Of that I have no doubt!

Happy Birthday sweet boy. I love you more than you could ever imagine. May this year be another year of amazing miracles as you grow and develop into who God made you to be!!!

Love, Mommy

.social media.

Social media has taken over our culture. It's changed the way we do things, how we view each other, and made things easier and more complicated all at the same time. 

But for most special needs families, social media has done something that no other form of communication has ever been able to do. Social media has given families who are usually isolated, alone and scared a place to belong, have community and feel safe.

I recently read a blog post by Rachel Engel titled "What Facebook Means to Special Needs Families" and immediately felt myself nodding in agreement to everything she said. 

The same day that we received Parker's diagnosis I immediately went online to do some "research". I use that term loosely because the internet is filled with so much information (some true, some false) and can be so overwhelming. 

Parker and Marcus meeting in Southern California for the first time.

I typed 'Joubert Syndrome' into my facebook search box not really expecting to find anything, but to my surprise there was a group for Joubert Syndrome and a private closed group for JS parents. I joined both and was overwhelmed at what I found.

After joining the JS parents group, I was immediately connected to hundreds of other families all over the world who were walking this same exact road as us. Some of it scared me, some of it was too much to process at the time, but mostly it was the most comforting place I could have imagined.

Other families reached out to us to hear our story, people shared their experiences, assured us that they were here to support us, and best of all encouraged us that things would be okay and that despite the diagnosis, our child and our family were deeply loved.

Meeting and feeling a love for another family and their children walking the same road is a pretty cool experience!

It was something that no one else could provide for us. Our friends and family have been unbelievably fantastic and supportive, but they don't know what we are walking through everyday. Our little online community understands, are experts, and are constantly helping me be a better parent to my kids.

Not only do we get to share the medical and developmental aspect of our lives, but I always find it encouraging to see other families just living their lives. I love seeing pictures of them on vacation, doing "normal" things, and just living. It encourages me that JS doesn't have to completely control your life. That we are all human and I love being able to share in their everyday lives. 

I find myself in doctors appointments, in conversations, and in certain situations thinking of what my other JS parents would say and wanting their advice. Their advice, wisdom and shoulders to lean on have been instrumental in coping with our life with Joubert Syndrome. 

When special needs has made everything in our life a little more complicated, a little more involved and a lot more confusing; social media has made things easier.

As Rachel Engel wrote in her article, "For a special needs parent, it’s like being thrown a lifeline."

We have even had the opportunity to meet up in person with a few families when we have been on vacation and create lifelong friendships that would have never been possible without this social media invention.

Best buddies sharing a laugh and smile :) Couldn't get them to sit still for a good picture.

And despite all of the negatives and crazy things that social media has done, for a special needs mom it is an unbelievable resource, community and family that I cannot imagine my life without.

It is absolutely one of my biggest lifelines and for that I am so grateful!!

.perpetual mourning.

A few years ago another special needs mom posted an article about the grief that parents experience when they have a special needs child. 

They call it perpetual mourning. Perpetual because its not something you work through and process and move on from. Its constant, ongoing, never ending.

And honestly, I couldn't think of a better way to describe it. 

Each milestone missed, each set back or plateau, each new piece of equipment, and everything else that glares at you in the face every single day to remind you that your child has special needs and the expectations, dreams and hopes you had for your child are radically different now.

Laying on the floor playing with this toys because therapy and walking wore him out!

For the most part I am able to recognize when I am grieving and to take the time to cry, talk, write, and process those thoughts. I do best if I can really let my guard down and let it out. It allows me to work through those moments and then get back to advocating, working with, and loving my children.

But the grief and the sadness of the difficulties and trials the boys face never end. And they look up at me while they are struggling to do even the simplest things and ask for mommy to help. For mommy to make it all better. For mommy to carry them or help put a puzzle together, etc.

The best daddy in the world sitting on the bench with Parker watching his cousin play t-ball since Parker can't walk to play on his own.

But I can't always do everything for them. And I want to be able to fix their frustrations and their challenges and I can't. All I can do is encourage them, teach them, help guide them, and try and make things possible for them.

And there is nothing harder to do as a mom than to sit by and watch them struggle knowing I can't fix it. 

I feel so helpless.

When Parker was first diagnosed with Joubert Syndrome in 2011, I was referred to the foundation's website as a resource to learn what Joubert is all about and what could be expected of the future. Because the future was and is the scariest part in all of this.

Walking back from the pool after swimming. 

 I remember reading that most kids with JS didn't walk until they were 4 or 5 and some never walk at all.

I think this part hit me harder than everything else I read. 4 or 5 years old?!

And here we are 2 weeks away from Parker's 4th birthday and he is still not walking independently. Sure he uses his walker to get around in short distances and he has absolutely made tremendous progress in all areas over the last 4 years, but still the reality is that he isn't walking and it is still going to be awhile before that comes true.

And this is when the perpetual mourning surfaces it's ugly head yet again. 

The reality that Parker is stuck inside his little body and is so limited by what his low muscle tone will allow him to do. That I still have to carry him around everywhere, that he yearns and strives to do the things other kids his age do and he can't, that I have to carry a double stroller, single stroller, and a walker in my car just to get everyday tasks done.

He spends hours upon hours in therapy, works harder than any other kid I know, and will try and try again despite fatigue and lack of success. And it doesn't seem fair. It doesn't seem right.

Horse therapy. Hoping this brings some new successes for Parker.

I get discouraged and sad and feel like I will never see my baby boy walking around in a fully functioning body. And it honestly breaks my heart into a million pieces and leaves me with literal heart ache.

But luckily this grief doesn't completely consume me everyday, and I am able to function in the way that the boys need from me. Because I am their able body. I am their hands and feet since they cannot do it on their own.

With only a few more months before baby girl joins us, I am beginning to get anxious of what that is going to look like. How I am going to function with 3 children- 2 with special needs and possibly another? What is this going to look like to do daily tasks since I am only one person and will have 3 people dependent on me for their every need?

The reality of how I have to grocery shop. Hard to fit groceries in the cart with two little boys as well :)

I get overwhelmed, I get scared, and I grieve that reality of what to expect. 

But the grief is healthy and a part of the process. Because without it, I wouldn't be able to advocate the way I do. I wouldn't know what to fight for regarding their care. I wouldn't be able to love them the way that I do. And I wouldn't be able to recognize the abundant blessings that they bring to my life. 

Because no matter the amount of mourning and grief life with special needs brings, the blessings are so much greater and my life is so much more abundant and meaningful as a result of being their mom. 

They say the days are long, but the years are short. And each trial brings it's difficulties but the growth that comes after makes looking back that much greater and brings renewed hope that we will eventually get there and there is light at the end of the tunnel.

.pittsburgh.

I always find it hard to find the balance between doing things as if the boys were typically developing, but then also recognizing their needs and realizing that it is not the same as everyone else.

I find this tension in everyday situations but it is amplified when there are larger events or important situations. Our trip to Pittsburgh was no different.

Nick's younger brother Derek got married in Pittsburgh, PA a few weeks ago and so we made the trek out to beautiful Pennsylvania to be a part of it.

Shortly after Christa and Derek got engaged we started talking about the logistics of the wedding and all that it would entail to bring the boys across country. I quickly got overwhelmed at the thought of it, and then shortly after found out I was pregnant again. Perfect. So since Parker was in the wedding and Lane was not, my parents graciously offered to drive up to Washington and stay the week with Lane while we flew out to the wedding. This could not have been a bigger blessing!

Traveling across country is not easy with two small children in general, but add to the fact that both do not walk, have some sensory issues with big crowds, have to deal with a three hour time change, stay in an unfamiliar hotel room, be up at events late at night, and for me to be 7.5 months pregnant, was just going to be too difficult. I usually have the help of family around to help with the physical labor of the boys, but with everyone being in the wedding, I was going to be flying solo on this one.

So with many tears and worried thoughts, we left Lane in Washington with my parents and Parker, Nick and I flew to PA. The flights went great and Parker was a trooper on our travel day (thank God for the ipad!) and we finally made it at about 11:30 pm. 

The beginning of our travel day

Once we got to the airport and were waiting for the luggage, the cousins all ran around trying to get their energy out and Parker crawled around behind. I usually let Parker crawl around on the floors at airports and waiting rooms and places like that because he has to have a way to get his energy out. I get a lot of stares and dirty looks but I have learned to just ignore it and allow Parker to have fun in the best way he can. It would be one thing if he was content sitting in a stroller or wheelchair, but he absolutely wants to be out and moving around and his little body won't let him, so I let him do what he can.

The next day we didn't have any plans until that night so we spent the day recovering from our travel the day before. All of us grown ups were struggling way more than the kids!! Some of us ran errands, people took naps, and we just kind of got acquainted with the area. That night we went to Christa's parents house for a BBQ. It was a great night of food, meeting new people, playing lawn games and just hanging out before the wedding craziness. They were such gracious hosts!

Enjoying the attention from the bride and groom

Thursday I was able to sneak away for a few hours (kid free!) and go explore a bit of Pittsburgh. We went on the Duquesne Incline which had amazing views of the entire city and then drive around a bit and eat lunch at Primanti Bros. It was delicious and came with fries inside the sandwich!! 

View of Pittsburgh from the top of the incline

The girls at the top

The sandwich!

On Thursday afternoon and evening the big boys had Derek's bachelor party and so we took the kids to get their tuxes fitted and grab dinner on our own. The tux fitting was hilarious and I am glad that Parker was somewhat cooperative. The shirt was so big it looked like a dress on him, the pants were tailored into capris and came to his mid shins and everything else was just a little off. I was dying laughing because it was such a disaster. Luckily we were able to make all the necessary changes and get them fixed.

Parker's tux fitting :)

That night we hung out at the hotel and Parker decided he wanted to walk all over the place in his walker. Sometimes he just decides that's how he wants to get around and he did amazing! Was flirting with all the girls and walking all over the place. It was great to see him enjoying himself and not having any meltdowns or sensory issues.

Friday was rehearsal day and the big boys were gone almost all day, so we spent the morning at the park and then I tried to get Parker to nap so he would be rested for rehearsal and dinner. Parker had a really hard time with sleep on the trip and refused to take naps (which he definitely still needs) so that made for some *fun* moments. I'm not sure if it was the time change, the change of environment, the sensory overload or what, that caused him to refuse to sleep. 

Addy and Parker swinging at the park

At rehearsal Parker did a great job walking down the aisle in his walker and at rehearsal dinner did great too. He was busy as could be crawling around the venue (again he crawled all over the dirty floors and carpet) and walking in his walker and would just go up to people and start flirting and talking. It was a late night and we didn't get home until about 10:30. He fell asleep on the way back to the hotel and then was up for a few hours after before finally giving into sleep again.

On Saturday morning (the day of the wedding), Parker woke up in kind of a funk. He was grumpy and temperamental and very emotional. Not sure if it was the lack of sleep finally catching up to him or if he could sense the emotion and excitement of the day, but he was very hard to deal with. I was unable to get him to nap and it was about 95 degrees with like 80% humidity. I started to get a bit nervous and stressed about how he was going to do with a tux on and walking down the aisle in the state that he was in. He fell asleep in the car on the way to the venue and woke up a complete disaster. 

Pretty much how the entire day went!

Everything from getting him dressed in his tux, to trying to listen to instructions and take pictures was met with fits, screaming, hitting and crying. When it came time to walk down the aisle, I put Parker in his walker and his cousin Mason helped guide him and get him down the aisle. Derek was so sweet and gracious and came out half way down the aisle to encourage Parker to keep walking towards him. He made it all the way down but cried the entire way. I was sweaty and stressed and was trying not to make it a spectacle (since clearly the wedding was NOT about Parker), but everyone seemed to love it. All the people I talked to said they cried when they saw Parker walking and when Derek started walking towards him, they just lost it. I'm glad people enjoyed it and it wasn't a distraction because as a mom I was worried about it becoming a bigger deal than it needed to be. 

Parker Derek smiling with his namesake Uncle Derek

Mr handsome all dressed up

With all the groomsmen

After he made it down the aisle, I took Parker inside and we sat in the air conditioning and watched the ceremony from there. Parker then continued to cry and throw a fit for about the next 2 hours. Endless crying, screaming, thrashing, you name it. It was pretty much a worst case scenario. I was on the verge of tears the entire time and just trying my best to keep my patience and help Parker get control.

Flower girls and Ring bearers

After pictures, cocktail hour, and being announced into the reception, a babysitter showed up to help watch the kids during the reception. Parker got some food, was able to sit in the quiet room and play toys and watch shows and did awesome from then on out. He was perfectly behaved and even let me come in and out to check on him and bring them things without any type of fit when I would leave. 

The Dietzen ladies!

The reception was beautiful. Nick did an amazing job with his speech and had the entire place in tears. Derek and Christa were beaming and it was so obvious that their relationship was Christ centered and that it was truly a celebration. Christa looked absolutely STUNNING in her dress and the entire night was filled with lots of love, laughter and dancing!! We all had an incredible time and I am so glad we were able to enjoy it!

First dance (and the back of Christa's gorgeous dress!)

With the newlyweds!

Parker joined us for a few minutes on the dance floor :)

Sunday was a day of recovery and Monday morning we flew home. The flight home was uneventful and the kids did great again and I was finally able to hold my baby boy Lane in my arms again. While I missed him while we were gone, he was in such amazing hands with my parents and he loved every second of it!! He was spoiled with love and attention and I can't thank them enough. And Parker finally decided he wanted to sleep again and spent the next 3 days sleeping 12-14 hours at night and 3-4 hour naps...go figure!

Parker and Mason loved flying together and sitting next to each other

My parents with my boys before they left to head home :(

 I learned a lot on this trip, both good and bad....

1). Traveling with kids, ESPECIALLY kids with special needs is not for the faint of heart. Even though I only had one child to watch after, it was very emotionally and physically draining. Always being on edge waiting for the next tantrum or fit, trying to figure out what could be triggers that would set him off, carrying him all over (while 7.5 months pregnant), and dealing with all sorts of routine changes was hard. No other way to put it except for the fact that it is hard.

2). Having family around who love your children is never to be taken for granted. From my parents sacrificing their time and money to drive up and spend a week with Lane, to Nick's parents helping us get to Pittsburgh and helping when they could with Parker is the only way we were able to make this trip happen. We are SO so blessed that both of our families love our children and make sacrifices to help us out.

3). There really is so much good in the world and people really are kind. Everyone was so kind to us and so accepting of Parker the entire week that we were blown away. Bridesmaids and groomsmen we had never met, Christa's entire family, guests at the wedding- everyone was so willing to jump in and help and to make sure and tell us how much they loved Parker. It was almost embarrassing how much love and attention Parker got this week and people were so understanding when he would throw fits and were constantly reassuring us that it was okay. I couldn't have asked for kinder people to be surrounding us this week and God truly blessed us with everyone we met. 

4). Choosing your spouse is one of the most important decisions you will ever make! I know this one seems obvious but there were so many times over the week I was reminded of how amazing of a husband I have and how lucky I am to be his wife. From watching Derek and Christa's relationship develop and their focus on keeping God at the center, to their kindness towards us and Parker and wanting him to be involved in their special day, to looking back at the last (almost) 7 years of my marriage and how much Nick and I have grown together.....it really reminded me of how vital of a decision it is to choosing your spouse and that keeping God in the center of your marriage is so important.

5). That things are different for us and it's okay to process it and grieve those moments as they come.  As I said earlier, there is a fine line between pushing my kids to do things typically developing kids do and adapting things to their needs. Although people were so welcoming and understanding of Parker, it was still a major wake up call to us as to just how different our lives are with special needs. Everything requires some sort of adaptation and sometimes its painstakingly obvious to everyone. I had to allow myself time at the end of each day to pray about things, cry about things, and just accept that this is the way it is. It makes it easier to cope that way. 

We had such a wonderful time in Pittsburgh and could not be happier for Derek and Christa- THANK YOU for allowing us to be a part of your day and for really caring about us and including Parker. We are excited to see what God is going to do through your marriage and can't wait to stand along side you through it all!!

But in the meantime, I think we are gonna take the next few weeks to recover and not plan any cross country or international trips anytime soon :)