What is Joubert Syndrome?

.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.

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