.one year.

**I wrote this post about a month ago in the midst of some really tough days. I struggled with whether or not to post it, but I want this blog to be a place where I can look back and remember the good, the bad, and the ugly as we walk through this journey**

Just a few weeks ago marked the 1 year anniversary of Parker's diagnosis of Joubert Syndrome.

One year.

Part of me feels like it was just yesterday and then again it feels like it was years ago.

I decided to read through the blog post I wrote shortly after Parker was diagnosed. I didn't think it was going to be so hard for me to get through it. The wounds are still so fresh. And although I have grown significantly in the last year and have learned that this is our new normal, it still hurts.

It hurts so deep.

I was trying to reflect on what God has taught me over the last year, but I'm not sure I even can understand what He has been trying to teach me through this all.

I have learned complete and utter dependence, I have learned what it's like to be at your absolute breaking point, to experience the greatest blessing I could have ever imagined and at the same time greater pain than I could ever have imagined.

I have learned that it's all a process and I am definitley still a work in progress. It seems like over the past year I have been to the point where I think this is all I can handle, and then I am pushed farther.

Over and over again.

I'm trying to cling to His promises that He is good and will never give us more than we can bear, but

to be honest...

To be honest, there are days when I can't say that I believe it. I'm exhausted, tired, pushed to my limit and trying to be the best mom and wife I can be. They say that no one can understand what it's like to be a special needs parent until you experience it. And I whole heartedly agree. No one can explain the emotional roller coaster you are constantly on. How emotionally exhausting it is.

 That I have a hard time just sitting and playing with my son or enjoying spending time with him because I think about all the things I need to be working on with him. The physical therapy exercises we should be doing, the education and speech exercises I need to be teaching him.

I deal with the Mommy guilt of being a working mom. But not just the fact that I am away from home and he has to go to daycare, but I have constant guilt that maybe Parker would be farther along in his development, speech, and milestones if I was home working with him all day long. I can't help but think in the back of my mind that it's my fault he is so far behind and not making progress the way he should.

I get discouraged that I teach him the same things over and over and over again and it doesn't seem to make a difference. That he has a harder time grasping certain concepts, and I think that maybe if I was around more he would understand. That he has massive fits and cannot communicate why or what he wants.

I have to play the guessing game and try and calm down his 25 pound body and he squirms and fights me. And I feel so bad for him that he cannot tell us. Like he is trapped within his own body because he cannot communicate. I sometimes wonder if it will ever get any easier. Will Parker always have to struggle so hard? Watching your child struggle to do even the most basic things is excruciatingly difficult.

Will we finally walk through this dark valley and see the beautiful view waiting for us at end? It's a daily battle of survival for me a lot of days, and I wonder if my desperate prayers, nights of crying out on my knees will be heard and how God is using this for His glory.

Don't get me wrong, I love being Parker's mom and think that he is the most amazing thing to ever happen to us. I would do it all over again and I honestly hurt so bad because I love him with my entire being.

People always ask us how Parker is doing, and we generally answer with "great"... Because he is. His smile lights up an entire room, people are drawn to this little guy, and he continues to make slow but steady progress. But deep down its hard for me to even scratch the surface of what that means.

It's been quite a year, the highest of highs and the absolute lowest of lows.

For now, I will continue to depend on the Lord for my strength because I have most definitley learned I cannot do it on my own and pray that He keeps walking through this dark valley with us.

One thing is for sure though, Parker Derek Dietzen you have our hearts and we have forever been changed by your life!!!

.standing.

Parker has been working really hard on his leg strength and standing. He is getting stronger everyday and it's so fun to see the progress. He can now stand on his own unassisted while holding onto the table, or couch, or chair. Here's a quick video I shot of him playing with a drawer.

.hope.

I often find myself in awe of the progress that Parker has made. I look at him sitting independently, feeding himself, constantly jabbering and I am so proud of all the hard work he has done to get to where he is now.

But I also have times of panic

When I think about sending him to school or when signups for sports teams come around. What will that be like for us? Where will Parker be at in his progress and what will he be able to or not be able to participate in.

And then there are times that I think about the far off future.

When someone jokes about when our kids go to college or get married.

At times like that I feel like I have been punched in the stomach.

I put on a smile and laugh along with the joke,

but inside I am thinking..

Parker may never get to go to college, and he may never get married.

And it hurts to think that the things that I enjoy so much, may not be reality for my son.

But thinking so far down the road is too overwhelming for me so I just have to take things day by day in order to function. We celebrate the little things.

When Parker reaches his hands to the sky when we say "SO BIG"

Or when he figures out how to drink out of a straw.

We celebrate big when he starts sitting independently.

And when he picks up a toy phone and says "Hi" and jabbers on.

And I have hope that he will continue to develop and progress and enjoy life to its fullest.

I have been reading Kelle Hampton's blog for a while now and I love reading how she has processed dealing with her daughters down syndrome diagnosis.

That these things happen, that it may not be what we expected, but it's okay. That we refuse to let our children be defined by a "diagnosis" and refuse to accept what stigma's and limitations that society has placed on any child with "special needs".

Today she posted THIS video...

I haven't stopped crying since I watched it.

Regardless of your religious beliefs, the principle behind the event is amazing.

Some of society's most outcased people become the stars for the evening.

They SHINE.

This gives me hope. Hope for Parker and hope for our world.

THIS is what Jesus came to do and this is what I am going to do. Love those who society says are unworthy.

Because I know from personal experience that they are most worthy of being loved. That Parker is more than worthy of being loved and accepted.

It breaks my heart to think that there are so many special needs adults that are just forgotten about. Never given the change to attend a Prom, or feel special.

And I want to change that.

Not only for Parker, but for all those people out there who deserve to feel special, who deserve to feel loved. And to know that we aren't so different after all.

At the core of every person is the desire to be accepted and loved, regardless of anything.

I am excited and hopeful that there are many great things to come and I plan on taking the words of Jesus very seriously when he said:

Jesus replied: “‘Love the Lord your God with all your heart and with all your soul and with all your mind.’^{[c] 38} This is the first and greatest commandment. ³⁹ And the second is like it: ‘Love your neighbor as yourself.

{Matthew 22:37-39}

Loving your neighbor, special needs or not.

And that my friends, is some hope!

.updates.

Whew! January turned out to be even more crazy than December....how is that even possible?!? It's been a few months of ups and downs but so far 2012 is looking up for the Dietzen clan! Hopefully the below will help explain why I have been MIA the past few months.

The first week of November my mom came and stayed with us to watch Parker while his daycare was closed. It also just so happened that Nick had to be out of town for an audit so I was able to spend a kit if time {when I wasnt working} with just my mom and Parker :) It's so fun to get to spend time with my mom. I have a whole new appreciation for my parents after having a child and its really neat to see them with their grandson.

The next week, Nick's mom came and spent the week with us as Parker had ear tube surgery and his adenoids removed. He has snored extremely loud since he was born and had almost 10 ear infections, so this surgery was a must. Mishal was a lifesaver and stayed home with him while I had to go back to work and made sure he got his medicine on time, slept well, and got lots of love!! My dad also happened to be up here the day of his surgery for work, so he came to the hospital and hung out with us while he recovered. The surgery was still a little nerve wracking for me eventhough it is a pretty routine surgery. It's hard to see him go under anesthesia and he has been through so much already, I hate to see him have to do another thing. BUT, it hs been amazing!! No more ear infections and his snoring has almost completely stopped. He is such a trooper!!

SOOO Big!

For Thanksgiving we headed down to California to my parents house for a week. They had just moved into a beautiful new home so it was fun to see their house and spend a week with family in the beautiful sunshine! I love being able to go visit home every couple months and I hadnt been home since May, so it was a much needed trip to CA!!

December started off with our 4 year wedding anniversary {woo hoo!}, and then we had Nick's work holiday party. And between holiday parties, crafting, decorating, and Q4 at work, it as Christmas before we knew it. We spent 10 days in Spokane with Nick's family for Christmas and New Years. I was excited for 10 days off work and relaxing and hanging with family...however, it didn't turn out to be the relaxing week I thought. Right before we left, Parker came down with strep throat so he was on antibiotics and was definitley off. So that allowed for little sleep and sanity for mom and dad. Then about 5 days into his antibiotics Parker came down with a nasty case of the stomach flu and we ended up in Urgent care and he ended up getting an anti nasea shot. Nick then came down with the flu that same night and I got it the next day. So we were one sick family :( We enjoyed being around family but wish we could have all been healthy!

Loving the Christmas Tree!

January started off Nick's busy season and we both jumped right back into work after our break. Parker still wasnt doing very well and was waking up at night quite a lot. We ended up taking him to the doctor again and he had strep still because he never finished his first round of antibiotics due to the stomach flu. This made for very stressed and sleepy parents as it had been about a month since Parker had slept through the night...but we were on the mend. Then "snowpocolypse 2012" hit the Seattle area right at the same time of our 3 day national sales meetings. We got a considerable amount of snow and ice and it pretty much shut the city down. So I ended up having to spend 3 nights in downtown Seattle at a hotel for the meetings. So Nick was playing Mr. Mom all while trying to get the billable hours he needed for tax season and navigate the snow and ice. It was fun and crazy and stressful all at the same time! Then on Saturday night we had my holiday party at the Paramount theatre in downtown Seattle which was really fun! And then that Monday we left for a week to Washington DC!

Snowpocolypse 2010...the beginning!

Holiday Party

We participated in a study at the National Institutes of Health on Joubert Syndrome. They flew us out to Washington DC to study Parker and other children with Joubert Syndrome to follow the different conditions that can go along with that. They were more specifically looking for kidney and liver issues as well as retinal deterioration. I will do a whole separate post on this trip because it was amazing and so interesting, but the good news is that Parker's test came back great and they dont foresee any isssues in the future with his organs or eyes :)

At the Lincoln Monument

Riding the Metro

During the EEG

Now here we are in Febuary! CRAZY!! I am started a new position at work {woo hoo} and Nick is full fledged into busy season with the long hours and weekend working. Parker was doing great for a few weeks and was sleeping through the night, but the past few nights have been challenging with little sleep. And so goes the juggling act of our lives!

Random thoughts and upcoming blog posts: Holidays; NIH; Balancing Act; Future Babies, etc.

Hope that has peaked your interest for future posts :)

.welcome to holland.

My friend Lindsay sent this to me the other day and every word of it rang true for me. And at this point in our journey I am happy to say that I love being in Holland and think it's amazing...but there are still days that I wish we went to Italy instead.

WELCOME TO HOLLAND

by

Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

 

 

 

 

 

.merry christmas.

Merry Christmas and Happy New Year from the Dietzen family. We pray that you have a blessed holiday and enjoy time with those you love!

.reflections and new beginnings.

I looked at the calendar the other day and realized just how quickly this year is coming to an end.

In just a few short weeks, it will be 2012!! Where has the time gone?

Part of me is really glad to see 2011 come to an end. This year has been extremely tough on our family. We have fought some pretty tough battles and our lives have been forever changed. I'm ready for a fresh start, to put this year of trials behind us and start having life be a little "easier" {whatever that means}.

But a part of me is extremely grateful for this challenging year.

I was looking back through pictures of last Christmas and New Years and it is honestly really hard for me to look at those pictures. To see the hope, the naivety, that we were so blissfully unaware of what was to come in the next year.

Christmas 2010

Life was perfect...I had my new baby boy, we owned a home, had a great marriage, stable jobs. Everything was perfect in my little world.

Christmas 2010

I could have never guessed just how radically my life was about to change in 2011.

New Years 2010

...I want to cry, to scream at those pictures...IF YOU ONLY KNEW what was coming...

.

We. Had. No. Idea.

The first few months of 2011 brought a new tax season {which is always challenging},  a foot long blood clot for Nick and a series of tests, ultrasounds, bloodwork, etc. It brought the change of accounts at work for me to a busy and crazy account, the diagnosis of Parker's eye condition Nystagmus-that later lead to the diagnosis of Joubert Syndrome. Balancing 2 full time jobs, daycare, hospitals, blood work, endless appointments, physical therapy, education therapy, MRI's, and many other challenges.

MRI-March 2011 {diagnosed with Joubert Syndrome on March 9th}

I had to think about things like "what would I do if I lost Nick and became a single mom" to then thinking about "what would I do if I lost Parker".

And both of those things were possible are still possible.

I went from worrying about Nick working too many hours, to making sure he got his shots and took his blood thinners. I found myself watching him like a hawk to make sure that a part of the blood clot didn't break off and go to his heart {as if I could control that}.

Parker using a Physical Therapy tool to help build his core strength

I went from worry about Parker sleeping through the night and get breastmilk instead of formula, to researching kidney failure, retina deterioration, low muscle tone, early intervention, wheelchairs and walkers {all things associated with Joubert Syndrome}. I found myself taking pictures of us together everyday, just in case one day down the road I didn't have him around to take pictures with anymore...at least I would have those pictures.

A self timer pic to capture a moment with Parker and I

My life was turned upside down in 2011 and to be honest, I'm not sure how I even survived those first few months.

I was purely in survival mode. I tried to keep a brave face, to smile, to do a good job at work and make dinner everynight. To keep some sense of normal in our lives.

first time swinging at the park-April 2011

The Lord really carried me through those days. But even in the darkest of days, I had a peace that God was in control and that all things would work out for the good.

Looking back, it is really crazy for me to see how much this last year changed and formed me as a person. Every part of who I am was tested this year. My character, my relationships, my faith, my work ethic.

Everything.

And I can honestly say that I am a better person because of this year.

I had to really dig deep....really figure out who I am, what I believe, and why.

I have never felt so close to God one minute, and so far away from God the next.

But He is the only thing that got me through this last year. Knowing that His plan is so much greater than my own, and really trusting that He won't give me more than I can handle.

Snuggling with Daddy-May 2011

Because at times, at times, I felt like all of this was WAY more than I could handle.

But it wasn't, and because of it, I have a deeper faith, deeper relationships with others, a stronger marriage, more patience, perspective, confidence, and a beautiful and special son that I wouldn't trade for anything in the whole world.

First hair cut-July 2011

I am entering this new year of 2012 with the same hopes for the future as I did upon entering 2011. But this year I am a different person, and those hopes and dreams are rooted in purpose and intentional living.

First Birthday-July 2011

That no matter the circumstances we face, the Lord gives and takes away and we praise His name regardless.

It has been amazing to see just how big of a God we serve and how the circumstances in our lives have helped shape those closest to us as well.

It's amazing to see how many lives Parker has changed already. This little guy is already doing big things, and I am amazed everyday at how many people are touched by his life. God has big plans for him in this next year and the years to come. I can't wait to see what they are!

I pray that this next year will be an easier season of life for us, a more peaceful and restful year.

Random Family Pic-November 2011

But that we keep the same desperation and hunger for the Lord that we did during this crazy year of 2011.

And that next year I can look back at 2012 with a greatful heart, knowing that I was changed and shaped as a person even more than I am now.

Snowflake Lane-Christmas time 2011