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.

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." 


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!