A Place to Belong

February 09, 2012

When I was 19 weeks pregnant and I found out that something was not quite right with our baby, I felt alone.  All around me were happy people, experiencing normal pregnancies.  I felt like I was the only person in the world that was going through what I was going through.

Alone.  Terrified.  No hope for the future.  I struggled just to exist for several weeks.

I wrote this.

The emails started coming in.  They were filled with stories of other people with babies that were diagnosed in utero with a cystic hygroma.  I met Deanna.  She made me feel it was going to be OK, regardless of whatever condition was causing Lily’s hygroma.  I started hearing from other people:  people that had lost their babies, people whose babies survived the cystic hygroma, but were now coping with their ultimate diagnosis.  And while we wouldn’t find out until Lily’s birth that the reason for her hygroma was Turner Syndrome, it didn’t seem to matter.  I suddenly wasn’t so alone. 

Our baby, Lily, made it.  She was born… alive!  I felt so relieved.  She made it from my womb into my arms safely.  We were finally told that the growth on her head was not connected to her brain, and 4 days after her birth they sent us all home… together!  For weeks my brain couldn’t process any more than feed baby, sleep, feed baby, change baby, sleep, over and over again.

About six weeks after Lily’s birth, I finally started to process her diagnosis, Turner Syndrome.  I started to process what this would mean – for her life, for our family, for our future.  I’ll be honest, I started to freak out a little.  When Lily was still in my womb I was so focused on her making it, that I never started to think about what it would be like if she really did.  Suddenly, I was faced with a new reality.  Again, I felt alone.  Sure, I had those stories of other babies that survived a cystic hygroma, but none that I can remember actually ended up having Turner Syndrome. 

In the past, even with my weight loss journey, I found that online support groups, either through email or now through facebook or other social media outlets, have been a huge source of support for me.  And so, desperate to not be alone, desperate to feel normal, I started my search.  I needed a place to belong.  I found a yahoo group for Turner Syndrome parents at first, and then I found a Turner Syndrome group on facebook.  I posted Lily’s story, I posted about our struggles, I posted about weight gain issues and reflux.  It was only a matter of minutes until the responses started pouring in.  These people understood.  I knew I had found "my people." 

No matter what you’re facing - maybe it’s a the birth of a child, a divorce, the death of a loved one, a weight loss journey, or a health issue – I encourage you to search for an online support group, to lift you up when you are down, and provide advice when you need it.

I’ve learned more from my Turner Syndrome online support groups in the past month than I ever could have imagined I would.  I’ve developed friendships with people I’ve never physically met.  These people are an amazing community, an extended family.  They get it.  We walk the same road, but we walk together – never alone.  And Lily and I, we’ve finally found a place to belong!

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  1. Lily is such an inspiration for life and living! So are you, Sarah!

  2. "It takes a village" So glad you have found yours! Love you!


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