Our Story

I answered the phone on the top of the piano and could tell from the nurse's voice that the biopsy was positive before she said it.  Christian had made so much progress since he came into our care that there was little doubt in my mind that he was healthy.  I'd made peace with Matthew's diagnosis, but Christian's blindsided me.  I was certain I couldn't bury two children.

The choice wasn't mine to make and while we are frequently lauded for not "giving up", that thought wasn't anywhere nearby nor was it ever.  They weren't a diagnosis by then - they were our children.  Christian recognized me as his mom and cried when I left him.  

Giving them back, if you could do something so terrible, would have been a phone call.  But it was as foreign to both of us as "giving up" our daughter Melody - and in our eyes, no less wrong.*

I pulled out my mama bear and rallied to beat Sanfilippo Syndrome.  And I lost.

That's okay with me now.  It's the greatest tragedy of my life, but I'm not unique.  Suffering is everywhere.  If I fix my eyes on my circumstances, I will question God's goodness, but if I keep my eyes on the cross I'll see his eternal perspective.  (It sounds good here, with all the kids tucked in bed, but it's a daily struggle).

It will be a while before I'll hear his sweet voice say "I love you" again, but it will come. 

* I have to take a moment here and say that it was wrong for us in our stable marriage with letters behind our names and relatively easy access to resources, but Christian and Matthew's biological mom made an enormous sacrifice.  She is the unsung hero here.

You can also read about our story through the eyes of Shannon Gianotti by clicking here: A Foster Family Faces a Terminal Diagnosis.