Monday, June 6, 2016

How Facebook Helped Me Find My Tribe


As I dropped the last of the bags from Davy's 9 day hospital stay in the middle of the living room, I paused to look around.  So much had changed since I was there last, in more ways than one.  

We had recently moved into our new house, and I hadn't had a chance to unpack or rearrange furniture since my time was consumed with trying to get 2 month old Davy to eat and running him to doctors' appointments.  So, during Davy's most recent hospital stay, during which he had surgery to place a G Tube, my in-laws had spent several long days putting my house together.  I had left a house full of boxes and come back to a home.

My family and friends had all pitched in to take care of the 3 older kids while I was at the hospital with Davy and Hubby was at work.  Before being discharged, one of our doctors quizzed us to make sure we had a support system in place since he knew we weren't in for an easy ride.  He was impressed with how everyone came together to help us.  My family definitely wasn't in this alone.

How Facebook Helped Me Find My Tribe

And yet, we still were.  No one I knew had ever had a feeding tube.  I didn't know anyone else who was going through an experience similar to our situation with a medically complex baby.  People were so caring and empathetic and yet, no matter how hard they tried, there was no way that they could truly know how I felt.  So while we had an amazing support system in place, it wasn't the only support system I needed right then.  I needed a tribe.



A few weeks later, I was up at 2 am rocking Davy because he screamed and turned blue if I laid him down.  In an effort to stay awake, I grabbed my tablet and started browsing Facebook.  It turned out that everyone on my friends list was sleeping, and it only took me about 3 minutes to scroll through my whole newsfeed.  So on a whim, I typed "feeding tube" into the search bar at the top of my feed.

How Facebook Helped Me Find My Tribe

I was blown away at the results.  I had no idea that there were entire pages and groups devoted to "tubies."  I ended up joining a worldwide group called Pediatric Feeding Disorders/FTT/GERD/and Kiddos with Feeding Tubes.

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Facebook isn't just for connecting with friends & family-it's a place to find your tribe.
 
http://ctt.ec/83HIf
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How Facebook Helped Me Find My TribeAt that moment I didn't know it, but I had found my tribe.

No matter what I posted, be it a question about Davy's care or a vent about how hard it was to be a medical mom, they got it.  They encouraged, empathized, advised, and gave virtual hugs.  Some of the members and I are now Facebook friends and, although we are miles apart, we are in this together.  
   
Before I joined the feeding tube group, I thought Facebook was just a place to like pages and keep up with friends and family.  I had no idea that Facebook would become my lifeline.

Davy had his feeding tube removed on September 29, 2015, but I can't bring myself to leave the group.  These are my people, my fellow tubie and medical moms.  They are my tribe, and I need my tribe.








Check out this list from Singing Through the Rain with over 60 Facebook groups for special needs families to find your tribe.   

60+ Groups for Special Needs Families

This post is linked up at: 1. Marilyn's Treats 2. The Zippy Zebra 3. Mom's Small Victories 4. Missional Women 5. Being Fibro Mom 6. Love That Max 7. Comfort In the Midst of Chaos 8. The SITS Girls 9. Called to Mothering 10. The Zippy Zebra
 

17 comments:

  1. I can not imagine what you must have went thought and I am so glad you found a community that could offer you the support you needed. People think social media is negative and disconnecting and it can be if used the wrong way but like you I have connected to some wonderful people that I have never met face to face but they have supported me and encouraged me and I would have never had them in my life if not for social media. You are a brave, inspiring mother thank you for sharing this.

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    1. Thank you so much for your kind words! There are definite pros and cons to social media, but the way it helps eliminate isolation is priceless.

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  2. I have found exactly the same via Facebook support groups and by liking other people's pages. I only have a few friends who have experienced similar to what I have with my daughter's additional needs so therfore I was desperate to share experiences with those with a similar story :)

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    1. Just being able to share your story and experiences with people who understand what you're going through can be a huge help. Thanks for your comment!

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  3. I love facebook for this very reason. I have found my albinism and autism tribes there too and without them I would have had a much harder time getting to grips with everything. It is so much more than just a platform to virtually catch up with your friends!

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  4. I am so glad you found the support you needed! I am on a few groups that I find really helpful, plus just finding message boards, twitter, etc. have literally saved my life! How different our lives would be without the internet! Stopping by from Chronic Friday Linkup!

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  5. I completely understand as a EDSer I would lose my mind without our"dazzle" or tribe as you called it.

    The world as a whole can offer support but if they haven't experienced it they can't really understand. I would love to see this shared a Sharing Sunday. :)

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    1. I can't imagine going through something like this without a "tribe!" Hard to imagine that just a decade or so ago, people didn't have these kind of resources.

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  6. Awesome article Hannah! HE'S SO STINKIN' ADORABLE!!!!!! I'm so glad he's doing well! Wow, what an experience. Thank you for sharing this Facebook tip, it's hard to know what life will bring, so having the knowledge of a resource like that may need to be utilized. Thank you for sharing on Chronic Friday Link-up! Pinned/Tweeted/Shared

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  7. Awesome article Hannah! HE'S SO STINKIN' ADORABLE!!!!!! I'm so glad he's doing well! Wow, what an experience. Thank you for sharing this Facebook tip, it's hard to know what life will bring, so having the knowledge of a resource like that may need to be utilized. Thank you for sharing on Chronic Friday Link-up! Pinned/Tweeted/Shared

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    1. Thank you! I may be a *little* biased, but I think he's too cute for words :) Before I stumbled on my Facebook tribe, I had no idea these resources existed so I'm hoping that, by spreading the word, more people will know about them when they have a need. Thanks for stopping by!

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  8. That's awesome, Hannah! It seems there's a FB group for just about everything these days. I've really benefitted from a few homeschooling groups there, and of course, our blogging tribe! I'm glad you found the support you needed at the time you needed it most. Thanks for sharing with #FamilyJoy Blog Link-Up Party! :)

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    1. There really is a FB group for everything and I'm so glad that people are able to find support through them. Thank you for hosting the linkup!

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  9. Hannah, that's awesome. I lead an online Bible study, and those women are my tribe. Facebook really can be used for good and not evil. :)

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    1. I lead an online Bible study too with several of my friends! Facebook groups are such a great way to do that :)

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Thank you for your comment! I read and try to reply to every one :)