.peaks and valleys.

A lot like in life, the journey of special is full of peaks and valleys. 

Some really tough times, followed by some really amazing times, and then the cycle begins again.

I have become more acutely aware of the peaks because I know just how much of a miracle they are. The valleys are always there in the unknown world of special needs, but the peaks aren't guaranteed and we make sure to celebrate like crazy when we are in them.

Recently we have had the amazing privilege to be experiencing some pretty big achievements from BOTH boys at the same time. Their growth lately has left me astounded and the fact that they are both doing so well leaves me with tears of gratitude.

Something as simple as Lane finally learning how to drink out of sippy cup by himself instead of me having to hold it is a big deal in our household. Seriously qualifies for a dance around the kitchen for this mama. A little more freedom, a little more independence. Progress people!!

It seems like I work with them all the time, and try to teach them things, adapt activities so they include therapy exercises, read books, work on speech, and it's hard to see the progress on a daily basis. 

But then I will look back on where they were a month ago and I am astounded at how far they have come.

Last week at therapy, Lane's therapists told me how much progress he has made with his speech. They re-tested him for feeding therapy and he was age appropriate in almost all areas and he had gained 11 new words since the previous week. As if that wasn't enough, his physical and occupational therapists shared with me the growth in his head control, abdominal muscles and coordination, and think that he will be crawling shortly. They were amazed at the significant progress he had made in just a few weeks.

Then Parker's speech therapist gave me an evaluation of his speech and he was within 3-6 months of his age for his vocabulary and language. To be within 3-6 months of kids his same age in speech is unbelievable considering he didn't start talking until he was 2 1/2 years old. His physical therapists also shared with me how much more stable he is looking as well as the progress he is making using his walker.

I walked out of therapy that day elated. 

It's so easy to focus on the things your child cannot do. To see the gap from kids their own age and to mourn the fact that your child is different. Our society focuses so much on fitting in and being "normal", and when you don't quite fit into that mold, it takes a lot to fight those demons.

I find myself grieving for my boys all the time on things they cannot do, yet it's not something that bothers them. Parker is completely content drawing chalk in the driveway instead of playing basketball in the street, but I grieve that for him. 

But then I hear of the progress and the peak that they are in and it makes that sadness disappear and I could not be more proud.

To put the icing on a really great couple weeks, I met with the speech language pathologist at Parker's school today. They re-tested him and he scored not only normal, but above normal in a lot of ways. His grammar, language, context, etc. was not only right on target, but better than that in so many areas. I just couldn't believe what I was hearing. He has worked so hard, and is thriving!! He struggles with his breath and so longer sentences are harder for him to get out, and he won't be the fastest talker around, but he has all the components. He actually no longer qualifies for services because he doesn't need them.

As hard as it was for me to let go of the services, he doesn't need them! And that is cause for a HUGE celebration. 

She also shared with me a lot of their thoughts for the future and what they see for the next few years and I am blown away by how smart, social, hardworking, and amazing my little guy is. And not only that we see it, but that his entire preschool team sees it as well.

I don't know that we would be able to survive this journey without the friends, family, teachers, therapists, etc. that walk through these peaks and valleys with us. A lot of my darkest times in those valleys have been shared on this blog and some of them haven't quite made it out of my heart yet. 

But the growing we have done during the valleys, and the absolute celebration and pride we have experienced through the peaks are what make this unexpected journey so amazing. It's what's shaped me into who I am, and what is shaping our boys into who they are.

I'm not naive enough to think that there aren't some really dark valley ahead, but for today that doesn't matter.

Today we celebrate the peaks.

.ava's story.

Another one of the cool things that we have experienced through this journey, is getting to connect with other Joubert parents all across the world. We have met some of the most amazing and inspiring families walking the exact same road as us and it is so comforting to have such a great support system.

Lindsay Little is one of those moms that I have had a chance to connect with through social media. We both belong to the Joubert Syndrome Parents group on facebook and have been able to message a little bit and hope to meet in person at the next JS conference. 

Lindsay was willing to share a little bit about their journey with their daughter Ava and what having a child with special needs has been like for them:

Ava was 7 months old when we noticed she wasn't meeting the average milestones. So we started therapy. 

Her PT noticed her right eye would turn in & that Ava wasn't using her right side. So Ava got glasses when she was 10 months old. She had an MRI that showed cysts on her optic nerves. We saw several specialist along the way, but no one could tell us why she wasn't meeting her milestones.

We started intense therapy, 4 days a week when she turned 1. She started crawling at 19 months!

Numerous doctors told us that Ava's MRI showed nothing abnormal about her brain. But as a mother, I knew something wasn't right. When Ava was 22 months, we flew to John Hopkins in Baltimore. I was assured that Ava would one day walk & that they would find out what was wrong with her.

 

After years of tears wondering what was wrong, we got Ava's diagnosis of Joubert Syndrome. I was crushed. My hopes & dreams for her were shattered. However, Ava has continued to surprise us. She took her first steps at 28 months & was walking by 30 months.

This girl has taught us so much about life. She is so strong. She continues to improve every day. She said her first sentence a month ago.

It's very difficult having a child that can't communicate with you. Tears have been shed for lack of communication. I have hope that one day Ava will carry a conversation with me. 

Ava will be 4 in March and it's amazing how far she has come in the past year.

Faith & hope in Jesus is what gets us through the day. He said he would never leave us nor forsake us, and he has surely been there for my family!

Thank you so much for being willing to share your story Lindsay! Ava is beautiful and we hope to meet you all in Chicago!

.sharing your story.

I love hearing other people's stories. 

I love hearing where they came from, what they do, who they are and what has shaped them.

The people in life that I am most drawn to- are those who are open, honest, vulnerable and willing to share their story. There is just something so rich about getting to know someone through their own words and experiences. Not only to know them as a person, but it also helps shape my perspective, my viewpoint and my worldview. We are shaped by our experiences and since we don't have the capacity to experience everything, it is important that we learn from others. 

I used to be quite a shy person and sharing my story and being vulnerable in front of others was just not something I was willing or able to do. It terrified me to have to talk about myself and share things that were personal to me.

Throughout college, I was able to mature and grow confident in my own skin and really learn what it meant to share life with others. To share my story and to really appreciate how it helped me to grow.

But even then, I didn't really feel like I had much of a "story" to tell. Nothing in my life had been that abnormal, I hadn't faced much adversity, and my life was pretty idyllic. I didn't feel like my sharing would be much of a benefit to others since there wasn't much to tell.

Well….fast forward a few years and here I am. Having more of a story than I could have ever imagined. Not quite the story I imagined I would tell. But you know what? I think it's one of the best stories ever. 

Because it is powerful.

It's real.

Unexpected.

And a huge blessing in disguise.

My story involves having two of the most beautiful boys with special needs and their ability to change and transform my life in ways I could have never imagined.

Their lives, struggles, smiles, and accomplishments have challenged me, broken my heart, lifted my spirits and made me more proud then I could have ever imagined.

By simply sharing with others what this journey has been like, whether it is in small groups, one on one, through this blog, or in any other circumstance, the story of Parker and Lane has been transformational. Not only just for me, but for many others as well.

I prayed that I would be able to make an impact in this world and that my life would show significance. And although I had no idea what that meant, I am 100% confident now that it is through sharing our journey of special needs. 

It seems scary and daunting at times to share my deepest and darkest feelings and takes a lot of emotional energy, but it's worth it. Because you never know who is going to need to hear your story at that time.

And the coolest part about sharing your story, is that everyone has one. Even though you might not think so, there is always something that has transformed you into who you are that someone else needs to hear. And through the process of sharing it with another person- you grow, mature, heal, and become a better version of yourself. 

I think its part of human nature to long for that connection with others, to long for purpose and relevance….and I truly believe by sharing your story, we build those connections. 

What will the world miss if YOU don't tell your story??

I'm guessing the world would be missing a whole lot!

.scott's story.

One of the scariest things that Nick and I had to face after receiving the boys' diagnosis was what their future looked like.

Before having children, I always imagined that their future would be limitless. That they would be able to do whatever they dreamed and nothing would stand in their way.

Then we heard the words Joubert Syndrome and all of those dreams for my children were stripped away.

What do you mean they might not be able to walk? Talk? Go to college? Get Married? Live on their own?!?!

These questions and a million trillion others ran through my head as I tried to process what exactly "Joubert Syndrome" meant for their future.

It was all way too overwhelming for me and some of the best advice I received from other JS parents, was to just take it one day at a time.

And that has proved to be so very true.

Instead of being overwhelmed and scared for their futures, I get glimpses of hope for what their futures might actually look like.

Each milestone they reach. Each obstacle they overcome. Each new skill they obtain.

It all gives me hope for what amazing things they are capable of.

And Scott MacLellan's story is no different. Scott's story of life with Joubert Syndrome not only causes me to grin from ear to ear but also beam with pride for what an amazing example he is to everyone. Not only those living with Joubert, but to everyone in general. His story shows that you are capable of anything you put your mind to!!

Here is Scott's story in his own words:

I’m 28 years old from Ottawa, Canada, and was diagnosed with JS 2.5 years ago. 

Throughout my life my parents and I received many different diagnoses, the most common of which were cerebral palsy and ataxia. Since there was never really any clear diagnosis, most of the cosmetic and/or medical things that have come up were treated individually at the time.

For the most part, I grew up like any normal kid, just with a few different accommodations. My parents always fought hard for me to be in a stream-lined school setting, but with the help of an EA for scribing and carrying books. 

I participated in accessible sports like Taekwondo and sledge hockey, went to a summer camp for disabled children for many years, and got involved with organizations for the disabled. It was because of this that I started doing public speaking, first on behalf of one of the organizations, then later on my own.

I went to a regular college, and came out with certificates in Media and Communications and Scriptwriting. I’m now writing articles about transitioning to adulthood with a disability for a blog called Support for Special Needs and looking into writing for other publications or websites.

Back to JS. 2.5 years ago, a new family doctor had gotten some of my notes from pediatrics, and wanted to go over them with me. She saw Joubert noted on an MRI from many years ago, and when I said that I knew nothing about it, she suggested genetic testing. So, later, my parents and I met with a geneticist and found out I had the syndrome.

 From there, we connected with the JRSDF and met Karen Tompkins, who was the president at the time. She asked me if I’d like to speak about my life with Joubert at the conference in Minneapolis, and I did. 

Everyone, from the specialists and parents to even some of the teenagers who were there, complemented me and thought I should go further with the speaking, writing, and advocacy, so that’s what I’m trying to do now.

Not only did Scott play sports and go to summer camp, but he graduated from college, writes for a publication and speaks and advocates for Joubert Syndrome and special needs.

These are amazing accomplishments and I am so proud of him!

Thank you Scott for being willing to share your story and for bringing so much hope to others through your life.

.our marriage and special needs.

I'll be honest and say that I had really high standards for my future husband. I was picky about what I wanted and had a long list of non-negotiables. There were a lot of things I was not willing to compromise on.

I didn't date just to date. I wasn't a flirt. And I could tell pretty quickly if a guy was quality or not. 

I met Nick my freshman year in college and was initially attracted to the tall, dark, and handsome baseball player that he was. But shortly after getting to know him, I knew that a lot of the qualities I looked for in a spouse, he possessed. 

We dated briefly at the end of our freshman year but quickly realized we were both not ready or mature enough for a relationship at that time. Nick actually left Biola for some time, but ended up coming back for sports related reasons. We {somewhat} remained friends during that time but didn't talk all that often and both were going in totally opposite directions.

The second semester of our junior year in college, our paths crossed again and we started becoming better friends. At some point during that time, Nick called me and asked for a second chance, asked to take me out on a date again and see where it went. I was a little hesitant at first because I did not see it coming, but started to get really excited.

I knew we were in a different place this time and pretty much from our first date the second time around, we were headed in the direction of marriage. We both knew that if we were willing to entertain this relationship again, that there was a reason we were investing in each other. 

We dated for a year and then got engaged, and married 6 months later.

We were 22 when we got married. Babies!!

I couldn't have known it at the time, but that decision to choose Nick as my spouse was one of the best decisions I could have I ever made.

I knew he was a man of character, integrity, and faith. But I had no idea the depth of those qualities until we faced this journey we are currently on. 

Neither of us could have imagined in a million years that we would be the parents of two special needs boys and facing some extremely difficult circumstances. 

While the divorce rate in our country is right around 50%, for parents of children with special needs it is right around 80%.

80%.

That's a huge punch to the gut. 

Having children with special needs puts huge strains on a marriage. It causes for the dissapointment of unmet expectations, the guilt or blame game of why it happened, the financial burden of the medical and therapy services, the lack of opportunity to have regular date nights or time together because getting a babysitter is no easy task, and so many other things.

In addition to all of these things, I think its a lot harder for men to process the reality of their child having special needs. Especially for men with little boys. 

I know I can't speak for every man, but I know Nick had grand dreams of what he and his boys would be able to do together. Play baseball, go golfing, coach his teams, spending father/son time together. And the reality is that he may never get to do a lot of these things with our boys. 

Having to come to terms with that and really accept that takes a lot.

A lot of maturity, surrender, self-reflection.

And a lot of times men {and women} run from that type of situation, they can't accept that something is wrong with their child. Something they cannot fix. And I honestly grieve for the families that have to experience that.

Fortunately for me and for our family, Nick ran into this situation head on. He stared it right in the face and has lead our family through it all. He's been my rock, my constant, my grieving partner and the only other person in the world who knows what it's like to watch these boys accomplish things.

He's loved Parker and Lane unconditionally and never for one second put his unmet expectations of what he thought his boys were going to be like, on anyone else.

And watching him be their dad causes me to fall more in love with him everyday. Not only that, but going through these difficult situations has caused us to really rely on each other and grow so much closer. He is the only person that knows exactly what I am going through. 

Special needs has changed the dynamics of our relationship. The dreams we had of having lot of children has changed. I rely on him to help me do things-not only to spend time together as a family but because I literally need the extra hands as both boys are extremely dependent on us because of their physical disabilities. The stress from Parker's behavior is extremely wearing and we rely on each other to step in and give each other breaks.

The reality of our relationship is a far cry from what I imagined. It's not the relaxed easy life of having fully abled children with limitless futures. Or being able to watch our kids grow up and develop on their own. But instead we have conversations of what life looks like for the boys after we are gone. We don't just get to watch the boys develop but we literally have to work their muscles and brains out to help them develop on their own timeline.

But somehow we do it. And somehow we do it well.

He deals with my emotional breakdowns, helps me keep perspective, and encourages me to continue being the mom I am to these boys. 

Do we have our hiccups? Of course!

There are plenty of times where our communication is off, where we get frustrated with each other, where its tough to get along. I don't want to give you the impression that our marriage is perfect, because it most definitely is not.

But in the grand scheme of everything, we have been able to use those situations to grow our relationship stronger. We've had to work through things most people don't have to.

Our life is anything but glamorous, and there are days where we look at each other wondering how we survived the madness. But at the end of the day we have each other. And believe it or not, we have special needs to thank for the depth of our marriage.

If I could go back and do it again, I would marry Nick all over again. I could have never known how much God was looking out for me by preparing Nick to be my husband. I was only 22 when we got married. Hadn't faced much of "real" life. Hadn't even lived on my own outside of college or gotten a big girl job. 

But I am so incredibly grateful that I get to share my life with Nick and we get to experience life together. 

For better or worse. 

.routine.

I have to say it....

I enjoyed the holidays but I am so thankful to have routine and order back!

I loved the holidays this year. The awareness the boys had to Christmas. The joy on their faces opening presents. The late night conversations with family. The lingering after dinner and the countless memories made.

But....

I love the predictability and order that comes with the New Year. I love cleaning up the Christmas decorations and having a neat and {somewhat} clean house again. I love that school is back in session, that therapy appointments are back to normal, and that I can feel like I have some control over our lives. 

Even if its just a teeny tiny bit of control :)

I am currently reading a book right now called "Shut Up About Your Perfect Kid: A Survival Guide For Ordinary Parents of Special Children" by Gina Gallagher & Patricia Konjoian. It's a funny book that pokes fun at the reality of typical and special children alike and about the rollercoaster ride that we are all on as parents. 

One of the lines I read the other day that really resonated with me was this:

"But when you have a child with a disability, you simply have no choice. Change is part of our everyday life. We never know what each day will bring, or what crazy direction life will take us in."

And I couldn't have said it better myself. 

While the holidays were a lot of fun, it was also hard. Being around people all the time, changing up the boys sleep schedules and putting them into new situations constantly was tough. Especially for Parker.

We never knew how he was going to react or what would be a trigger to set him off, but I was constantly on edge- trying to make sure everyone was okay.

I try to make our lifestyle as normal as possible. We still go to the park, go to loud places, bring the kids to friends houses, drop them off at church, etc. It is a lot harder than it would be with a typically developing child, but I want my boys to grow up in a realistic environment. To learn to adapt to their surroundings even though it might be more difficult for them. 

And we kept it that way through the holidays. Still went to Christmas parties, had babysitters, late nights, loud and crowded places, etc. And for the most part they did amazing! Blew my expectations out of the water. 

However, towards the end of the holiday season I could tell it was starting to wear on them. Heck-it was wearing on me!!

And I think we were all craving some consistency. Some normalcy. Some routine.

With routine, I know more of what to expect. I am able to help keep Parker's fits and behavior {somewhat} normal and predictable. And I can kind of know what to expect for the day.

And that helps me cope with the unpredictability and unexpected situations that are a part of special needs life. 

So as much as I would love to keep up the spontaneous, fun and glamorous life we experienced during the holidays, I am perfectly content with my boring, predictable, and routine normal life :)

.happy new year.

Hope your New Year is off to a great start. We spend the night in reflection over 2013 and looking forward to 2014. Despite a late night and a very early morning with the kids, we are excited and looking forward to this fresh start and all of the great things to come. 

Cheers to 2014!!