Friday, April 1, 2011

What it means to be loved...

This video below is amazing... the song perfect!  You know how sometimes a song speaks right to your heart?  This song grabbed my attention from note one.  This reminds me exactly of when Braden and Grant were born.  Braden had several severe heart defects - AVSD complete, PDA and the most severe being right hypoplastic heart syndrome.  Each defect alone would have required heart surgery.  The AVSD is common to children with Down syndrome.  The right hypoplastic heart syndrome is not and is a fairly rare heart defect that alone can cause devastating complications... combined with the other defects was bad... really bad.  The right hypoplastic heart syndrome was the one that qualified him for a heart transplant.  But, sadly, he could never receive an organ transplant because of his Down syndrome.  That was heartbreaking and stunning news to us as parents.  To look at this little baby love and know that their was a surgery, a transplant, that could save his life but he was being denied was a horrifying nightmare.  The recommendation from the doctors was hospice.  The doctors said he didn't have a year.  We decided to swim against the stream.  To do all we could to try and save his precious life.  We insisted on surgery despite the odds being stacked against him.  So much so that we decided between Tom and I not to let our family and friends know just how bad those odds were.  We wanted them to be prayerful, to be hopeful.  We needed their hope.  We clung to hope.  And we brought our little boy home from the NICU to grow bigger to have a better chance at surviving his surgery which he would have at 3 months of age.  And while he was home we made that tiny newborn a Life List.  We actually wrote down things we wanted him to do with us before his surgery.  Because we didn't know if we would have an after-surgery. 

We took him to the horse farm behind our home.  We walked through the barn on a beautiful, warm, fall evening, showing him our favorite horses.  As a family.  Just as we had talked of while I was pregnant with the twins.

We talked to the owners of the restaurant that was a family favorite and they stayed open late one night for us so there wouldn't be a crowd of germs and we had a family meal, all together, at that favorite restaurant.

We talked to a photo studio about having family photos taken.  They were so accomodating - opening early just for us so we could avoid the crowd of germs and even freshly washed and sanitized the studio to make it as germ free of an outing as they could.  And I treasure those pictures.

We had a Christmas celebration that was indulgent and nothing short of a coma-of-comfort-goodness.  It was perfect.

We lived for him with no regrets and we showed him what it meant to be loved...

Tom saying goodbye to Braden just before his surgery.

Moments before his surgery.