What is Joubert Syndrome?

.straddling the fence.

Being a mom to typically developing kids is tough. Being a mom to special needs kids is tough. But I have to say, I'm really finding that being the mom to both is really tough. 

I attended a mom's group/bible study this past week (which I loved and can't wait to go back), but opening myself up and putting myself in new situations is hard. Not just because of the typical new situation hurdles, but because I am finding it so hard to balance being a mom and a special needs mom. And I know these two things go hand in hand, but there are some added complications that go along with this.


When the boys were younger, I was either working full time and not able to get involved in a lot of "mom's group" activities, or I was busy hustling them between therapy and doctor appointments and with their limited time and mobility, it made it really difficult to get involved in anything. So now that the boys are both in school and I just have Elyse at home, I figured it was time for us to try some of this out. Meet some new people, expand our community, and just have some fun!

So Elyse and I went and she did great getting dropped off and had a whole new group of little buddies she could play with. But I couldn't help feeling like an imposter the whole time, like I wasn't showing the whole truth of who I am and what my family looks like. Everyone thought she was so adorable (which i'd have to agree!), and saying nice things to her and I, but I was silently grieving inside. 


I was grieving the fact that this is the way it was supposed to be with the boys, I was supposed to be able to attend these kinds of things, and they were supposed to be able to go all these places with me. And I was grieving the fact that going there and being a part of this was the mom I had always imagined I was going to be. Instead of spending our time at therapy, we were supposed to be here. Seems like a small thing, but it was a trigger to the death of the dreams I had when I pictured what being a mom was supposed to be like.
And I loved being able to do it with Elyse, but I also felt somewhat cheated by the fact that the boys never got to experience this with me. 


All of the women I met at the event were fabulous and I instantly felt comfortable and excited about what I was going to learn and be a part of. But as soon as it came time to go over our discussion questions and chat among our table, I felt kind of panicked. 

 It's weird for me to be around people who don't know our story. And its such a part of who I am, that I can't not talk or share about the boys and what my experience has been like parenting. So here I am at a table with all new people I have never met and we got talking about our kids and I START TO CRY!!! Hello, waving my freak flag!! I mean who does that?! I was really embarrased after it, but they were all super gracious and kept asking questions and encouraging me to continue sharing. 


And I was thinking on the way home why I still cry every single time I talk about the boys, our journey, and what our life is like. It's frustrating to me in some ways, because if I want to continue sharing our story, and bringing hope to other people, I can't be so emotional every time it comes up. But on the other hand, I am someone who feels deeply and when it comes to my children, they are an extension of every fiber of my being and I love so deeply that I can't help but express that in my words and emotions.

I think I feel and take on so much of their struggles for them, and have a lot of fear and uneasiness about the future and their daily lives, that it manifests itself in any type of conversation that revolves around them. As well as the fact that this journey and being blessed with the boys has so profoundly changed who I am (in a good way) that sharing any of that brings a lot of emotion.


I always thought that if we were blessed with a typically developing child it would make things so easy. Any Elyse being added to our family has brought healing in so many ways, but it also has brought complications I didn't foresee and am having to process through. How do I parent in the way that I am able to with Elyse, but also include the boys and be transparent about who I am and why I am the way I am? How do I get rid of the guilt that I am able to easily do certain things with Elyse, but was never able to with the boys because of different circumstances?

It almost seems like it would be easier to be on one side of the parenting fence or the other, than straddling in the middle trying to figure out how to navigate both. But just like with everything, with time comes wisdom and healing and this will be a conversation and a situation that will be continual for me throughout their lives and something I will always be able to continue to grow in.


This parenting deal is no joke! I could have never imagined how much I would be changed and shaped and molded by having children. Every single day it causes me to rely more and more on the Lord for guidance because man oh man I definitely cannot do it on my own! But I am so thankful for gracious friends and other mom's willing to walk along side me as I figure this out, women who let me cry (!!) after just meeting them, and everyone who knows me and continues to extend grace to me every day as I am walking this unexpected journey.


**photos taken by the fabulous Melissa Babasin Photography

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