Living

If a grandparent, or parent, or uncle, or great aunt were diagnosed with a terminal condition and were told to have about three to five years left to live, one would say that this person is dying. Family and close friends would visit more often to spend precious time together to indulge in memories, to share stories, to relive grand achievements, and to celebrate this person's life.

Perhaps on the drive home,  the visitor starts to grieve.  The brave face he put on, just moments ago, starts to fall.  He is witnessing the deterioration of life.  He is witnessing attrition, collapse, loss.  He is waiting for the light to dim.  He is watching a loved one die, losing one physical ability at a time.  He is preparing himself for closure.

My Niko has a terminal condition, but she is not dying.  This is where perspective is my salvation.  We are told that she has a scant number of years to live, but her light is not dimming.  Rather than watching someone lose function slowly, I have a small round baby with unknown potential.

On the seesaw of doom, we somehow ended up on the raised seat, lifted high above the murky water.  I have the pleasure of witnessing Niko develop and learn.  I get to watch Niko acquire new skills and functions.  I get to watch her explore and find pleasures.  I get to have hope.  Will she learn to sit up?  Will she speak?  Will she roll over?  Will she crawl?  Will she call me momma one day?  Niko is not losing but gaining.  She is not fading, but growing.  I get to have hope in a child who is not dying, but living.        

One of Niko's new pleasures — hanging her right leg out of her stroller. 

Mila's number one fan

Ridiculous in pigtails?  Maybe. But she circumvented "hideous" and went right back to "cute".