.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 :)

.summer adaptations.

I am a summer girl. 

I love the long days. The hot days and warm nights. The tans. The food. Just everything!

In a dream world, I would send the boys outside to play- ride bikes with the neighbors, run around barefoot, swim in the pool, run through the sprinkler, eat popsicles, etc. And I wouldn't worry about them coming inside until it was time for baths. This was my childhood and pretty much what I had envisioned for my boys.

As you can imagine, the reality of what our summers look like is drastically different from what I imagined. As much as I love summer, It complicates things for me and can be a lot to handle sometimes.

Reality looks more like- pushing one or both of the boys in the wagon, patching bloody knees from Parker crawling on the cement, finding "bikes" or mobility toys that the boys can use, tending to tantrums from one to the other about carrying them somewhere else or getting them something different to play with, and taking them to the pool is almost a nearly impossible task by myself.

Usually by the end of the summer day I am hot and sticky and exhausted from trying to meet their needs, make their summer days as fun as possible, but also know and keep things within their limitations. It's a tough balance and I find myself just wishing and dreaming of the days when they can walk and run free and imagine how much easier it will be. It's hard not to go there.

But in the meantime, I have found a few things that have given them some independence and allowed us both to have a more enjoyable summer as well as some great memories we have created so far.

It may not be what I had imagined, but there is always a way to find the positive and the good and we are harvesting the good this summer!

Lots of practice walking in the walker! This helps us avoid scraped and bloody knees.

 Finding local parks and playgrounds with adaptable equipment. We found a big hill full of sand that the boys loved!

Parker is obsessed with riding his plasma car. This has been a lifesaver as he can be out and about with the neighbors and have his independence. HIGHLY recommend this toy!

 Practice walking with toys- shopping carts, lawn mowers, etc.

Instead of going to the pool, inviting the neighbors over for a "pool party" in the backyard can be just as fun!

 My boys LOVE chalk and "painting" with water. Just fill a bucket and give them paint brushes and it looks like they are painting the cement.

A lot of picnics in the yard!! Breakfast, lunch, and dinner become super fun if you eat them on a blanket outside :)

Hours and hours spent in the sandbox. Lane still tries to eat the sand sometimes so this can be a little difficult with him!

And one of their favorite things to do is "help" daddy with yardwork. A shovel and some dirt and my boys are in heaven!

.in clinic vs. in home therapy.

First of all, I want to say THANK YOU for all of your encouraging words and sentiments about baby girl. I was so hesitant to share and so scared of being vulnerable, but it is amazing to see the community we have surrounding and supporting us.

They say it takes a village to raise children, and we are lucky that our village not only encompasses our friends and family near by, but also our extended JS family all over the world!!

Now onto today's post!! 

I wanted to share our experience with in home therapy services versus in clinic therapy services, as we have done both. I want to preface this by stating that each and every kid is different and what works for some children will not work for others. So this is purely my opinion and experience, but hopefully it can help others out there walking through the same thing.

I was having a conversation with a mother at the therapy clinic the other morning about why we chose to do in clinic therapy as opposed to in home therapy and after talking through our reasons, I thought this might be a good thing to share on the blog as I know a lot of my readers are walking through endless amounts of therapy with their kids.

We were first introduced to the world of pediatric therapy when Parker was seven months old. After missing quite a few developmental milestones, our pediatrician referred us to an early intervention center. Early intervention, in most states, is considered age birth to three and is a program used to help babies and toddlers with developmental delays or disabilities. These programs focus on helping these children learn the basic life skills that typically develop in the first three years of life- physical, cognitive, communication, social/emotional, and self help. If a child has developmental delays and qualifies for services, the state is required to provide these services to the children and their families.

Research has shown that because children develop so rapidly in the first three years of life, that by beginning therapy services this early, it can alter the outcome of their lives. Many children with delays will be caught up to their peers by the time they graduate the early intervention services at age 3.

One of the pieces of equipment { a stander} they brought to our home to use

After receiving our referral from our pediatrician, a family services coordinator got in touch with us to coordinate all of the upcoming appointments. Parker was then assessed by a team of therapists and he qualified for physical therapy {1 time per week} as well as education therapy {1 time per week} which teaches the families how to teach and help their children. We were then assigned a therapist for each service he qualified for and we set up the recurring appointments.

The particular early intervention services that were available to us based off where we lived at the time were in home only. The theory behind in home therapy is that they use the objects, toys, and space in which the child already lives to make it easier for the therapy exercises to be part of their everyday life.

Stacking blocks in his high chair as part of therapy

While I understand the premise behind why in home therapy can be very successful, it never worked well for us. Parker did not do well when he was at home and I was around. It seemed like it was too much in his space for him. He would scream and throw ridiculous fits every single time his physical therapist came. It honestly became more of behavior management than physical therapy. And this went on for 2 years...each visit hoping it would get better. Some days were better than others, but I didn't see much progress in Parker and was very disappointed in how everything went.

A happy Parker during therapy time at home

Since this was our only option available for services and was my first experience with pediatric therapy, I didn't really know any better. We continued with it, and stuck by a physical therapist that I never really clicked with, but I didn't know what else to do.

We moved to Spokane when Parker was about 2.5 years old and after some initial difficulties with getting him involved in the early intervention services over here, we were assigned to a therapy center to continue his services.

After their assessments, they recommended physical therapy {2 times per week}, occupational therapy {1 time per week} and speech therapy {2 times per week}. I was surprised yet happy that they were recommending so much therapy for him. I had to fight in Seattle to get him services once a week, and here they were willing and wanting to see him up to 5 times each week!!

Learning to hold markers correctly and draw shapes at  Occupational Therapy

They did offer in home therapy services, but they also offered in clinic therapy as well. Since our experience was not very positive with in home, we decided to go with the in clinic therapy. 

And oh my goodness....this was the best decision we could have ever made for our kids!!

The first few times Parker would go back for services, I would come with him and sit in the room. He would throw his fits and cry and whine for me the entire time. So we changed our game plan and decided it was best for me to either watch through the mirrored glass, or to wait in the lobby. His behavior during therapy has been a complete 180. He is happy and pleasant and actually enjoys going to therapy now.

This has been the same for Lane. When he first started therapy, he would whine and cry if I was there and still occasionally cries when they take him back, but once they are out of my sight the behavior completely changes.

Lane's first therapy session

Another positive experience we have had with the boys being in clinic is that we have gotten to know many of the therapists that work at the clinic. Through seeing them in the hallways and them becoming familiar with the boys and our family, it makes it nice to know that there is a team supporting us. If one therapist is on vacation or gone, its easy to transition to a new therapist because they are already familiar with our boys. When you have someone come to the house, you really only get to know that one person and your child becomes just a name on a paper to the other therapists. This has been a huge bonus for us in getting to know so many of the wonderful therapists working with our children. And this particular therapy center goes from birth to eighteen years old, so even beyond the early intervention age they are able to be seen.

And an added blessing that I never saw coming was the community and breaks it has given me. Through waiting in the lobby while they are doing their therapy, I have been able to talk with other parents and see other children walking the same road we are. It's been nice to not be so alone and to know where to go for additional resources when needed. And sometimes if both of them are at therapy at the same time I can just drop them off and run to the store {kid free!!} during that time. It's been amazing and so good for all of us.

Learning how to crawl

Besides all of the above positives we have experienced for in clinic therapy, the best thing of all is the progress they have made. Parker made more progress in the first 6 months of being at the new therapy center than he did in the 2 years prior, and Lane is already significantly ahead of where Parker was at this age. I think a lot of their growth and progress has to do with the amazing services we are now receiving through our therapy center in Spokane.

I often times felt isolated when we were doing in home therapy because it was just me, Parker, and the therapist and there was no one else to talk to, compare to, or lean on for support. I also think for the boys having separation between their home and where they work hard has been a really great thing. Home is their safe place where they come to relax and can just be themselves, and the therapy center is where they work hard and are pushed, but they are able to leave it behind.

Obstacle course fun at therapy

I know that each person experiences different things and has had success with both types of therapy, but this has been our experience with the two. If anyone has any questions about early intervention or how to advocate for the services they feel their child needs, feel free to contact me. I know we have only been on this road about 4 years now, but I am happy to help where I can!!

Also, if you are having any concerns about your child's development, talk to your pediatrician and get a referral to an early intervention center. Starting your child in services early will give them the BEST possible start in life and I feel so lucky that we were able to start the boys so early. Even though we didn't have the greatest experience with in home therapy, it still made a huge difference in Parker's development and I would still recommend it to anyone trying to get their child the best start!!

.thrilled and shocked.

I'm not sure where to start this post or that I really even want to write this post...

But I feel as if the Lord has been prompting me to share and to process through everything going on in my head. And I do know that I want to look back at this time and remember what I was thinking and how I was feeling.

So here goes....

After Lane was diagnosed with Joubert Syndrome, Nick and I made the decision that we were most likely done having children of our own. We had two biological children with special needs and we knew that if we were to get pregnant again, we would run the risk of having another child with special needs. 

However, we did not take permanent measures to prevent this because we felt like it was too fresh and emotional to make that decision right after the diagnosis. We were taking all the other necessary measures to make sure we didn't get pregnant, so we felt like we were being smart and responsible, without making any rash decisions.

At the end of January I started to feel "off". Was having some insomnia, was feeling kinda sad and depressed and just was not fully myself. I decided to take a pregnancy test just to rule that out and thought maybe I was going through a mid-winter/tax season funk.

It honestly was the surprise of my life when IMMEDIATELY the pregnancy test showed as positive.

The boys were napping and Nick was at work and I literally almost passed out in the bathroom. I sat on the floor in our bathroom and just kept repeating "this cannot be real, this cannot be happening to me".

It probably took me 30 minutes of staring at the positive test and sitting in complete shock before I called Nick. He knew I hadn't been feeling well and when I explained to him WHY...he was shocked as well 

{although he was excited and handled it much better than I did :) }.

It wasn't until I heard Nick's voice that I started to cry. There were so many emotions going through my head that I just couldn't process it all. When Nick reassured me that everything was going to be okay and that we were in this together, I just lost it. I let the flood gates open and it felt good to start to comprehend it.

I spent the next few weeks crying, talking, awake all night, just trying to come to terms with what this meant. 

To be completely honest, I KNEW that this baby was a blessing, but with all of the other factors that we have to consider, this was hard for me to see at first. 

I spent many sleepless nights wondering how I was going to go to the grocery store, what were we going to do with the car, how could we afford to add another child to our lives and on top of that one that could possible have special needs, etc. There were so many things I was thinking that I almost hated my brain for thinking so much. 

22 weeks

I was almost embarrassed at first. I didn't want to have to tell people we were pregnant, or to have to deal with the judging looks or comments. We have our hands full with the two boys and their needs, and I almost felt like it was irresponsible for us to have another child.

And to be completely honest, it's taken me almost 5 months to get to a place where I am confident in God's hand in all this and am proud to say that we are having another baby.

It was one night when Nick and I were talking and he just said to me, "We have to stop thinking of this as a burden, or a challenge. This is a LIFE growing inside of you. One that although we didn't expect, we are so lucky to be able to have another baby."

And from that moment on, I have chosen to view this as an unexpected gift. 

As I was thinking about it one day and praying about this all, I felt the Lord just say to me.. "You've trusted me with everything I have given you so far...Trust Me with this."

And so far I have been able to. 

I have my moments of freaking out.

Of complete and total terror.

But I also look down at my growing belly and cannot believe I get to do this again.

I get to add another baby to my family and have another little life in our home.

I'm still not sure why God chose to bless us this way, or allow us to have another child, but I know how much I already love this baby and when I feel the kicks and movement, I am reminded of just how beautiful life is and how full of unexpected blessings.

We had our anatomy ultrasound a few weeks ago and found out that we are expecting a baby GIRL!! She will be joining our family in September.

The boys, especially Parker, have been so fun to watch as they

kind of understand what is happening. Parker comes to my belly and talks to his baby sister and Lane will pat my belly. It's as if they know that life is about to change and they know their sibling is growing inside me.

I cannot say that I have fully processed this all, or that there won't be many days of growing and learning through this in the days to come. But I have learned that God has greater plans for me and my family than I could have ever imagined and this is just one example.

We know that this baby could easily have Joubert Syndrome as well, and are praying for a healthy, non-affected baby, but we will love this baby no matter what and cannot wait to meet her. 

My friend Shannon sent me a card after we found out and she said "I pray that the new baby would be EXACTLY who God created he or she to be." 

And that has been my prayer for this baby. That regardless of her diagnosis {with JS or not} that she would be exactly who God is forming and creating her to be.

It's crazy how just when you seem to have a handle on things, or seem to understand why things are the way they are- it completely changes. 

For Mother's Day, Nick gave me a sign that says "Faith makes things possible, not easy". And its a perfect representation of our lives this far and what is to come. This parenting thing and bringing children into the world hasn't been easy, but our faith makes it possible and SO VERY worth it. 

God has a plan. I'm trusting that.

.spectrum of emotions.

Just like Joubert Syndrome has a very broad spectrum of children and their abilities, the emotions for the parents are a very broad spectrum as well.

Like I stated in my last post, sometimes are filled with glorious peaks filled with joy and accomplishment and sometimes are filled with valleys and dark emotional times.

Today was one of those days where I was overwhelmed with joy one minute and then completely paralyzed by fear the next minute.

Just a simple trip to Target today was such a defining moment for me.

I dropped Lane off at therapy and was able to run to the store for a few minutes by myself  {hallelujah!!}. While browsing the store an adult special needs group was on a field trip to buy some items and learn some things. There was a group of about 20 of them and they were taking up most of the walk way.

My first thought was to avoid them...it made me uncomfortable. 

Why? I'm not sure? But it did.

And then my next thought was "wow...who do I think I am?"

These people are MY life. These people are Parker and Lane. 

And yet I was willing to completely avoid them because they were in the way of my shopping experience. Because I was uncomfortable. With what? I'm not sure.

Did it hit too close to home? Was it a harsh reality that this could be my son's future? 

I dunno. 

But at that moment, I chose to walk right into the group of them and make eye contact, smile, and say hi to them. I wanted them to know that I cared, that I saw them, and that they are loved.

Because I would hope someone would do the same for my boys someday.

They will never know how ugly my first thoughts were. How embarrassed I am to even admit  How I was willing to walk by and not even acknowledge them. 

And it hit me that one day Parker and Lane might just be on a trip to Target with their special needs adult class. And how much I hadn't grieved that or hadn't even allowed myself to process what the future looks like.

I got to the car after and just sobbed. 

For so many reasons.

It really made me reflect and realize how much this journey we are on is for my sake. For my growth as a person and shaping my character.

I get so focused on the here and now with the boys, with their progress and their changes, that I forget how much it is changing me. And how much I need to be changed.

Not even 20 minutes later I received a message through someone who knows someone I know and ended up connecting me to a family who is fairly new on the Joubert Syndrome journey. Being able to connect with other families walking this road and bring hope and encouragement is one of the highlights of this for me.

I could just feel the divine intervention of this meeting and could tangibly see one of the ways God is using our journey with Joubert Syndrome for His glory.

It was a huge blessing after a tough moment of self awareness. 

After therapy and after Parker got off the bus from school, I just sat and stared at my boys. I sat and examined their little hands, and their eyelashes and just looked at how perfectly they were made. 

And I couldn't have been more content with this life I have been given.

This rollercoaster will continue, and the tough moments will be unbearable at times, but I will continue to dream and hope and pray.

Dream that they will go to college. Get married. Do whatever they want to do.

That they will channel their stubborn attitudes and hard work ethic into something great.

That they will far exceed anyone and everyone's expectation.

Because if I don't do that for them, who will?

 I need to allow these defining moments to continue to shape me and mold me into a better version of myself. 

But I also need to allow myself to grieve when necessary.

Because nothing about this is easy, and I need to be okay with allowing myself to deal with that.

That these unmet expectations are all a part of the journey and I will always be feeling something along this spectrum of emotions.