.therapy.

Parker's therapy sessions and I have a love/hate relationship.

On one hand, I LOVE to watch him learn and grown and see the progress he is making.

On the other hand, it is heartwrenching to watch your child sit through therapy sessions to help him do basic tasks that come so easily for other kids.

I remember early on in one of Parker's physical therapy sessions where he was learning to roll. He was trying so incredibly hard to roll over and just could not coordinate the strength and the muscles to do it. I remember looking up at Nick and he had tears in his eyes and then he just got up and left the room. I had no idea why at the time, but afterwards we talked and he said he just couldn't do it. He just couldn't watch Parker struggle to do very basic things.

He said "I left the room and went and had a very frank talk with God. Why does my son have to struggle so much to even just roll over. I just want to fix it and make it better for him. It's so hard for me to watch him struggle."

And I know exactly what he means.

But I think this is why God created men and women differently. I like to be a part of the process and watch it unfold, and as a result, I have primarily taken on the task of taking Parker to all of his therapy appointments.

Being a woman, its not so much that its hard that I cannot "fix" it, but its very emotional for me to think of what the future could look like for him.

For me, it helps me cope with the reality of the diagnosis if I know how to properly help Parker grow and develop.

Nick is there to be the emotional support for me, the provider for our family, and be the sounding board for all of the different scenarios and situations with Parker. And I am the emotional support for Parker, the physical presence at the appointments, and the teacher of everything we learn.

And I love the way that it works and that we compliment each other as parents. We have each taken to the specific roles that we are strong in, and we are able to be a team for Parker and provide him the best care possible.

Standing at the train table working on his stamina

Parker's early intervention providers {Kindering} have the month of August off and it is a welcome change to have a month to not worry about any therapy appointments at all! We just started up again a few weeks ago and it has been a whirlwind.

We currently have speech  and physical therapy once a week for an hour each, then a co-op class at the Kindering center once a week for an hour and a half, and then we are starting up a new therapy called Anat Baniel method shortly after the baby comes.

Its a constant juggling act with taking him to and from daycare, dr appts, work and therapy, but he has been making so much progress lately that it makes it so worth it.

Coloring {when he's not trying to eat the crayons} to work on his fine motor skills

His language is really starting to improve and he is starting to communicate with us through signing, small words, and imitation. We are learning all the animal sounds, basic needs {milk, water, food, more, etc.}, words that mean actions {dance, clap, touch your toes, etc.}, and many others. He surprises me everyday with the new sounds and words he is forming. Its so fun to see his brain making all the connections. And he seriously understands so much! So eventhough he may not be able to communicate back to us, he definitley is very aware of his surroundings and what is going on.

For physical therapy we are working on crawling, walking, standing, etc. His fine motor skills have improved drastically and he is really getting good and feeding himself with utensils, playing with activating toys, coordinating movements, etc. He is so close to crawling that I know it is going to happen anyday! He has his own little "scoot" that he does to get himself around and if he wants something he will find a way to get there. He is standing for long periods of time and very sturdy when he is standing so its fun to watch him stand and play with toys at a train table or the couch. For walking, we are still a ways away from that, but we are working on it.

First day of "school". The open house when we got to go meet the co-op teacher and his classmates

This week we were able to put him on a kiddie treadmill at Kindering with him in a harness so that he wasn't totally bearing all the weight on his legs and it allowed him to learn to take steps forward and learn that motion. So fun to see him at a place where this is the next step for him.

Working it out on the treadmill. Stud.

The co-op class has been so much fun so far and Parker LOVES it. It is basically a pre-school type setting that I am able to come participate in with him. They do free-play at the beginning, then an art project, then some sensory platy, circle time, motor room {like recess}, snack, and then its time to go. They do all the normal things but will adapt it to each kids abilities and the teachers are great. Parker smiles the entire time and I love watching him experience things!

It's been about a year and a half since we have been receiving services for Parker and I am so thankful for the amazing resources that we have right at our fingertips.

Sometimes I can barely bring myself to go to the appointments as they are both emotionally and physically draining, but it helps me learn and I love being able to teach Parker during the times that the therapists aren't there.

This kid has determination and fight in him and I know that he will go far and those little milestones that we continue to see are what keeps me going and keeps me fighting. The progress has been slow and steady and there are times I want to scream and cry and fix it all for him...but then the very next week he will do something incredible, something doctors said he would never do, and I can't help but smile through the tears.

Just last night he was playing in the family room while Nick & I were eating dinner and he moved all over the family room and got to each individual toy he was wanting without our assistance. He scooted, rolled, crawled, etc to get to all corners of the room and play with what he wanted.



Playing at the sensory table.



We just sat there in awe and were grinning from ear to ear.

He's getting there, he's doing it.

And that shared accomplishment for Parker that Nick and I saw makes us the most proud parents in the world.

There is hope. Parker is amazing.

.to make a life.

I met Julia my freshman year at Biola University. Her and my roomate Erin spent their childhood together in Northern California, and although Erin's family had since moved to Minnesota, they had remained close friends and were so excited to be living near each other again in Southern California.

I remember meeting Julia and feeling like I had known her forever. She was warm and inviting, beautiful, tall, and so easy to talk to. She was a year older than us, was dating a basketball player, studying to be a nurse, and helped Erin and I survive our first few weeks of the transition to college. Although she went to a different college about 30 minutes away, it was always nice to see her and get a chance to chat.

Over the years of living with Erin, I saw Julia every now and then and Erin would give me updates on her and her husband and what they were up to. It was always so fun to hear what God was up to in their lives and although I knew very little about their struggle with infertility, I was so excited to hear about their plans to adopt a baby from Ethiopia, and then even more estatic when I found out they were expecting naturally.

I was pregnant with Parker at the time I found out Julia and Dan were expecting as well and I remember grinning from ear to ear thinking about what they were starting to experience. Staring at my round belly, knowing that they were only a few months behind me and would soon begin to feel the flutters and kicks of their little miracle.

I was on maternity leave when I got the call.

Erin called me and was hysterical. I could barely make out what she was saying. All I could hear on the other end was deep, heart wrenching sobs.

My stomach immediately dropped and I couldn't even begin to imagine what was going on. All I knew was that it was not good.

I just started to pray...asking God to prepare me for whatever I was about to hear.

Then she finally got the words out....

Julia.....They....Lost. The. Baby.

What? I couldn't even process what she had said. It was the very end of August...wasn't she only a few weeks away from giving birth? Could this even happen?

Erin had received the news from some of Julia's family members and had very little information, but the one thing she did know was that their worst nightmare was coming true.

After Erin and I got off the phone, I remember pulling over, taking Parker out of his carseat and just hugging him. Rocking him and thanking God over and over for the miracle that was in my hands. Why would God take their baby, but allow me to have mine? I had so many questions and thought swirling in my head, but I knew they were questions I couldn't answer and so I sat there on the side of the road and cried and prayed for Julia & Dan.

Ironically enough, I didn't know it at the time, but I would end up being able to relate to their story much more than I ever thought possible.

Never can I even begin to fathom the pain and devastation of losing a child.

But, I can relate to the death of a dream. The unexpected circumstances that arise. The worries, concerns, questions, doubts that came for me in the form of Parker's diagnosis with Joubert Syndrome.

This past September 1st marked 2 years since Emma Jo Walser ran into the arms of Jesus. And to continue on her legacy, Dan has written a book called To Make A Life.

This book is an honest, open, raw, and intimate look at their story.



I invite you to pick up a copy of this book and allow their story to change you. To allow Emma Jo's life to transform your way of thinking and find the beauty that is made out of the broken.

We love you Julia & Dan and are so proud of what you are doing. We are constantly praying for you and know that your story is close to our hearts!!

.sweet nothings.

While we were initially shocked at the positive pregnancy test, and the emotions that went along with that, we are getting very excited to welcome this new baby boy into our home.

I try to spend my days imagining what it will be like to be responsible for two little lives. Somedays are filled with sheer joy as I play with Parker and imagine him with his little brother and them playing together. Other days are filled with sheer terror anxiety of how I am going to balance it all and deal with a special needs toddler and a newborn.

We are now roughly 8 weeks away from the due date, and it's getting more real that this is really happening!! My wonderful mom washed all of Parker's baby clothes for me and I got them organized and put away in his room. The boys will share a room for now, and it's so fun to see their stuff side by side and imagine what it will be like when both of them are in there together.

There are still some things to do to get ready for this baby, but for the most part I think our hearts and minds are prepared to welcome this baby into our home and now I am enjoying the fun things like baby showers, newborn sleepers and new baby things.

We were blessed to receive the double stroller I had been wanting as a gift. I have been researching double strollers for a while and after considering all our needs, we settled on the Double Baby Jogger by City Mini. It is currently in the mail and I am daily stalking checking the website for the status of delivery.

I ordered this sweet little crochet football hat for baby boy to wear in and home from the hospital. It came in the mail yesterday and it is so tiny!!! It's hard to believe that this hat will probably be too big for him! You quickly forget how tiny newborns are. I am just imagining snuggling his sweet little body while he wears this hat. And he will be born a Packer fan, so just preparing him for his first football season :)

We have been working really hard on Parker's speech and physical therapy lately. He has the month of August off of therapy because they are closed for summer break, so I have been pushing him really hard at home. He really is making progress with his signs and speech and you can tell he is trying so hard to communicate with us. He is also getting really strong and bearing weight on his legs for a long while. He is so close to crawling and will stand and play with his toys for a while. It's hard to explain to people who have typically developing children how big of a deal this is, but this is a HUGE accomplishment for him and we celebrate daily and let him know how proud we are of all his hard work. My goal is to have him at least crawling by the time the baby comes so that he can get to where he wants to go, and this little trooper is working hard to get there!

I am still trying to decide on a diaper bag for the new baby. I have just gotten to the point where I don't really carry one anymore for Parker, but newborn's require much more and I will need things to keep Parker entertained while we are out so I have been looking for a big bag that can be a catch all for everything. It will be my diaper bag/purse/toy bin/lifeline for a while, so I want to get something big enough and cute to carry around. I think I am going to go with the Petunia Pickle Bottom "Wistful Weekender" but haven't decided on color.

Other than that our summer travel is winding down {finally!} and we are spending our time getting organized and preparing for what is to come in the next few months. Trying to enjoy my last few months of pregnancy and my time with my firstborn.

Although this pregnancy has come with a lot of nerves, ultrasounds, testing and a whole lot of surrendering things to the Lord, I am enjoying the fun little things as well and love being able to pick out a new sleeper or diaper bag and dreaming about the future :)



.miracle baby.

After spending our week at NIH and completing all the test for Parker, we left feeling armed with knowledge and resources and very hopeful about the future. We came home exhausted, but excited about Parker's future and what the next few years held for him. My focus was on Parker and future babies weren't in the picture for a while...and I was completely at peace with that.

I felt like God was really gracious to us while at NIH and any fears I had leading up to that week were lifted away. It was all so positive and I really felt the prayers of others lifting us up. This was our life and we were making the most of this journey.

A few weeks after we got back, I looked at the calendar and realized I was late. You know...that monthly gift all of us women are blessed with...yeah I had missed it in January and was a few weeks late. I didn't really think much of it, but thought to just put any fears aside I would go buy a pregnancy test. I took Parker with me to the dollar store {yes, I am that cheap} and bought a few just to have on hand.

I took the test while Parker was in the bath and immediately the negative line showed up, so I went back to washing up Parker and finishing his bath. After I cleaned up the bathroom, I went to go throw the pregnancy test away and stopped dead in my tracks.

There was another line.

My dollar store pregnancy test :)

2 pink lines.

It was very faint so I wasn't sure what it meant. But I also remember reading that it is very rare for there to be a false positive.

I immediately got a pit in my stomach and started to cry. To be honest, the tears were mostly fear based.

We had just come off this week where I was finally at peace with joubert syndrome and what the future looked like for Parker, and I wasn't quite ready to face the possibility that we could be having another with JS.

In the past, when Nick and I talked about our future biological children, we knew that when we got pregnant again the baby would have a 25% chance of having Joubert. We were totally okay with that and ready to love whatever the Lord would bless us with.

But the moment I saw the positive pregnancy test, reality hit me hard. 

This was it...no turning back now. 

Nick was busy working long hours for tax season and didn't get home until about 8pm that night. As soon as he walked through the door, I timidly pulled up the picture of the pregnancy test on my phone and showed him the 2 pink lines.

I had no idea how he was going to react. Would he be excited, scared, surprised, upset? I had no idea.

Once it registered with him what this meant, he got the biggest smile on his face and wrapped me in a huge hug!! He was so excited and couldn't stop smiling.

I started to cry again. Expressing my concerns. Having 2 kids, 2 years apart with the potential for special needs in both. How were we going to afford this? Can we do this without family around?

But he just looked at me and told me everything was going to be okay...and that there was a baby growing inside of me. Clearly not our plans, but God has allowed us to get pregnant even if we weren't trying. Just further showing us that all of this is out of our control and we are so blessed to be able to have a new life added to our family.

I finally allowed the excitement that, yes, there is a baby growing inside of me. And if this baby is anything as amazing as Parker has been in our lives, then we are the luckiest people in the world. If Parker could bring us so much joy, how much more joy would another baby add?!

I waited a few days and then went out and bought a digital pregnancy test at the grocery store to confirm that yes, indeed I am pregnant. It took about 2 seconds before the screen read "pregnant" and I think I was grinning from ear to ear.

The first image of our miracle baby

 After the inital shock, I just couldn't stop being thankful that God made this decision for us. That we didn't have to spend nights writing down pro's and con's of having another biological child versus adopting. etc. Unless you have experienced something like this, I don't think you can fully understand the weight of that decision. I had dreaded having those conversations later on down the road, and God answered my prayers and made it so I didn't have to!

How we told our families that it was a BOY! Opened an envelope together with my family on FaceTime and Nick's family in person. Gotta love technology!

This pregnancy has been an emotional rollercoaster, but we are estatic to welcome another baby boy into our family in October. From countless ultrasounds, genetic counseling, dr appointments, etc. We have been all over the spectrum as far as emotions go on any given day. But as soon as I feel those kicks in my stomach, or see that beautiful baby on the ultrasound machine, I can't help but think we are the luckiest family in the world.

No guessing here...it's a BOY!

Profile image of our sweet baby

I cannot wait to watch this journey continue and have this story unfold. The plans I thought I had for my life have so drastically changed, yet God has met my needs and answered my prayers along the way. Even those mornings {yes, all the way until about 26 weeks} of throwing up in the mornings, reminded me of the blessing that I so do not deserve, but have been given.

17 weeks pregnant

22 weeks pregnant

26 weeks pregnant

For now, I am soaking up my last few months with my first born baby boy and am anticipating the arrival of our new baby boy. I can't help but dream of their future together as brothers, best friends, and a family of 4.



A little glimpse into my life with 2 boys....I see lots of cars, food and messes :)



My dreams are coming true and I feel so blessed that I get to be a mama to 2 boys.

.NIH.

In January, we had the opportunity to go to the National Institute of Health in Bethesda, MD {outside Washington DC} for a research study on Joubert Syndrome. They are currently studying the scope and spectrum of Joubert Syndrome and it's effects on other organs in the body.

First thing I saw when we landed. I LOVE me some Dunkin Donuts coffee. Best. Ever.

Joubert Syndrome is caused by a genetic mutation from both the mother and father's side and results in an underdevelopment of the cerebellum and brainstem. This malformation most commonly causes decreased muscle tone, difficulties with coordination, abnormal eye movements, abnornal breathing patterns & cognitive impairments. However, it can also result in retina deterioration, kidney failure, liver failure, and a series of other more complex issues.

Parker is most affected by his low muscle tone and the delay in milestones as a result. He does have nystagmus {abnormal eye movements} but it has improved significantly and is continuing to improve. Since he was diagnosed, we have been seeing specialits related to all these areas of the body. And so far, we have been extremely blessed to hear that Parker has a clean bill of health and they do not foresee any of these organ issues in the future.

Waiting for his echocardiogram.

Our trip to NIH, was a chance to see some of the top doctors in the whole world who really understand Joubert Syndrome and really take a close look at Parker.

We were flown out on a Monday morning and stayed through Saturday. Each day was packed with meetings and appointments. We were lucky enough to have my mom and Nick's mom fly out with us and spend the week going to appointments and even doing a little sight seeing with us. Our families have been our rock as we have walked this road and it was great to have them there with us.

Riding the metro to go see Washington DC

The first day we registered and got our schedule for the week. It was much less stressful and open than I thought, and I was pleasantly surprised that they kept time open for naps and lunch. We started at about 8:00am and were finished by 2 or 3pm every day. Parker got an echocardiogram to check out his heart, an EEG to check on his brain waves and activity, an ultrasound on his entire abdomen, an eye exam with dialated pupils to check the health of his eyes, blood draws, urine samples, nutrition appointments, etc.

I was extremely nervous before we went and wasnt sure how Parker or I was going to do with all this invasive testing. As a mother, you NEVER want your child to have to go through any of that, and I was worried about what they might find.

However, the entire experience was so positive and I actually really enjoyed the whole experience and finding out as much information as I could. The doctors and the team were amazing. They were so positive about everything and really walked us through each step, letting us know that we are not alone. They actually made us feel normal for having to go through this.

My boys sleeping after a long day of testing

Normal is not a word I would typically use to describe this journey we have been on, but the doctors didn't even bat an eye as I explained things to them and were so knowledgable that it felt so right talking with them.

This picture breaks my heart but is reality for us a lot. Nick had to hold his chin/neck because he was so upset and moving too much during the blood draw. They took 10 viles of blood!

Being a trooper...much happier after the blood draw was over.

We met with the team of doctors on Friday to discuss the results and what the future looks like. We were very pleased to learn that his eyes look great, his eye sight is actually slightly above normal for his age and they do not see any signs of retina deterioration. His kidneys and liver look great with no abnormalities on them. His heart was in perfect condition with no murmurs or defects. And all the blood work looked great, except for needing to be on a vitamin D supplement {which is no big surprise as we live in the land of no sun}. The conclusion was that Parker will eventually learn to walk, they expect that to happen at around age 3-4 and he will talk as well, he just will be delayed in meeting these milestones. None of that was big news to us, as that is what we are working on in Physical and Education therapy every week. They think Parker's future looks very bright and there is a lot of opportunity and hope for him.

During the EEG. He did GREAT! Just talked and smiled the whole time.

It was so great to hear such a positive outcome, as we are usually used to having to process much harder news. We were able to take some time each night and do some sight seeing and shopping. We ate at some great restaurants and take in the history that is all over the East Coast. I seriously fell in love with the East Coast and am dying to go back and travel all over.



Nick and PD walking towards the Washington Monument



Washington Monument

Lincoln Memorial

We also spent a lot of time talking about future kids and what that means for us. Because both Nick and I carry a mutation of the gene that caused Joubert in Parker, our future kids have a 1 in 4 chance {25%} of having Joubert as well. Our options for having more children are: pre-diagnosis implantation-where they would grow the embryo in the lab and then test for the affected gene and if the embryo was clear they would then do IVF and place the embryo in me; genetic testing at 10 weeks-where they would do an amniotesis and test the baby to see if they are affected and if the baby is, then they would abort the baby or if was was not affected, then they would let the baby continue to grow; use a sperm donor since the chance of the sperm donor having the affected gene is very small; adoption; or chance it and get pregnant hoping for the best and accepting the result either way.

Riding the metro back to the Children's Inn from our parents hotel.

Obviously if you know anything about me, most of these options are not actually options for us. The two we have considered are adoption and chancing it. Since before Nick and I got married we really wanted a big family, and one of the most difficult things to deal with regarding this journey has been this issue surrounding future children and our family. After our meeting with the doctors, we decided we would wait until the end of this year/beginning of next to start talking about what we wanted to do regarding future kids.

BUT....little did we know....a little miracle was already in the making....

.crawling.

Yesterday Parker hit a HUGE milestone. We were cleaning out the car and playing around while Dad was cleaning the garage and Parker got into the crawling stance. I had to help him bring his legs around but then he just propped his arms up and got on his knees! I couldn't believe it!! He then stayed there for quite some time and even pushed himself backwards a few times.

To say that I was proud is an understatement. I was beaming all night. So proud of this little guy. Something that seems so easy for other kids is extremely difficult for him, yet he did it anyways!! Cannot wait to continue to see what he does :)

Parker, I am SO proud to be your mama. You amaze me every day!!

.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!