The time I spent in the hospital while pregnant with Cara was above all, peaceful. 

I don’t remember being happy.

I don’t remember being sad.

It’s like the light went on. 

Even the darkest news I heard as light - mercifully. 

 And that’s what Cara has been since she entered our lives 3.5 years ago - light.  

Flashlight, candlelight, beam of light, blinding light, light of love, light of Christ, light of life.  

The doctors didn’t know what was wrong when at 31weeks in utero, there was suddenly no amniotic fluid.  You need the fluid to see, and so without being able to see, it was anyone’s guess.  It could be life.  It could be death.  It could mean a trachea.  Or dialysis.  It could be all fine with a little fix.  It could be a boy.  It could be a girl.  It could be bad.  It might be okay.  I think the professionals didn’t like the waiting game, since they couldn’t figure out anything ahead of time.  

When Cara was born, it took many hands to initially save her life.  But save it, they did.  Emergency surgery, ventilator, feeding tube, chest drain tube, I’ve lost track.  But at the time, I kept track in a little book.  A few of us did.  The moments and hours and days and weeks in the NICU are their own special kind of time warp.  We did it in shifts.  I remember many people asking me if I spent every waking moment in the NICU.  The short answer is no, not at all.  We had the great privilege of being allowed 4 people (in addition to parents) allowed in her room one at a time.  Therefore, she didn’t just get her mother’s presence and prayers; she had her father’s, her aunt’s, her grandparents, our dear friend would sing The Band, The Beatles, old hymns.  We had a code to let each other know what we thought of the nurse ‘on duty’.  As I recall, a Christmas tree meant…beware.  

Anyways, it certainly wasn’t all journal entries and sing-alongs.  There were many times where I’m sure the candle burned all night in many homes, as people prayed that she’d make it to the next day. The community around us rallied in ways I never before had known, and the doctors were good, and Cara made it home after 6 weeks in the NICU.  She was discharged with a drain in her side, that we emptied daily for 2.5 years.  (fixed now, btw!) 

A couple of months later, I got a call that her genetic results were complete, and she was diagnosed with Bardet-Biedl Syndrome.  It’s a very rare disease that manifests itself in various ways over time.  Obesity, kidney disease, polydactyly (all of which Cara has), and most notably, retinal degeneration beginning in childhood and usually resulting in nearly complete, if not complete vision loss.  This was the toughest point for me to hear and accept.  While vision loss isn’t as life threatening as kidney disease, it sounded scarier.  I can’t imagine life with kidney disease, but I can imagine my vision going black.  But “even the darkness is not dark to you”…

We are hopeful and excited for the work of Dr Drack. We hope to continue to partner with her work and team and efforts, knowing it may be a long road, but hopeful that it will benefit patients with BBS-10 and perhaps even Cara Belle. 

We are thankful for your love and support as we aim to raise $10,000 towards this research effort.    

Anna