.social media.

Social media has taken over our culture. It's changed the way we do things, how we view each other, and made things easier and more complicated all at the same time. 

But for most special needs families, social media has done something that no other form of communication has ever been able to do. Social media has given families who are usually isolated, alone and scared a place to belong, have community and feel safe.

I recently read a blog post by Rachel Engel titled "What Facebook Means to Special Needs Families" and immediately felt myself nodding in agreement to everything she said. 

The same day that we received Parker's diagnosis I immediately went online to do some "research". I use that term loosely because the internet is filled with so much information (some true, some false) and can be so overwhelming. 

Parker and Marcus meeting in Southern California for the first time.

I typed 'Joubert Syndrome' into my facebook search box not really expecting to find anything, but to my surprise there was a group for Joubert Syndrome and a private closed group for JS parents. I joined both and was overwhelmed at what I found.

After joining the JS parents group, I was immediately connected to hundreds of other families all over the world who were walking this same exact road as us. Some of it scared me, some of it was too much to process at the time, but mostly it was the most comforting place I could have imagined.

Other families reached out to us to hear our story, people shared their experiences, assured us that they were here to support us, and best of all encouraged us that things would be okay and that despite the diagnosis, our child and our family were deeply loved.

Meeting and feeling a love for another family and their children walking the same road is a pretty cool experience!

It was something that no one else could provide for us. Our friends and family have been unbelievably fantastic and supportive, but they don't know what we are walking through everyday. Our little online community understands, are experts, and are constantly helping me be a better parent to my kids.

Not only do we get to share the medical and developmental aspect of our lives, but I always find it encouraging to see other families just living their lives. I love seeing pictures of them on vacation, doing "normal" things, and just living. It encourages me that JS doesn't have to completely control your life. That we are all human and I love being able to share in their everyday lives. 

I find myself in doctors appointments, in conversations, and in certain situations thinking of what my other JS parents would say and wanting their advice. Their advice, wisdom and shoulders to lean on have been instrumental in coping with our life with Joubert Syndrome. 

When special needs has made everything in our life a little more complicated, a little more involved and a lot more confusing; social media has made things easier.

As Rachel Engel wrote in her article, "For a special needs parent, it’s like being thrown a lifeline."

We have even had the opportunity to meet up in person with a few families when we have been on vacation and create lifelong friendships that would have never been possible without this social media invention.

Best buddies sharing a laugh and smile :) Couldn't get them to sit still for a good picture.

And despite all of the negatives and crazy things that social media has done, for a special needs mom it is an unbelievable resource, community and family that I cannot imagine my life without.

It is absolutely one of my biggest lifelines and for that I am so grateful!!