Six months ago today, my granddaughter Anna passed away. It is hard to lose a grandchild but even harder when the hurt is multiplied by having to watch your own daughter go through the pain of losing her child. I know how I feel, but honestly, I can't even begin to imagine the pain my daughter suffered at saying goodbye to one of her own children at only 16 years of age. I don't want to turn anniversaries of Anna's death into sad recounts of hurt and pain so what I would like to do is tell you how courageous Anna was but even more so, I would like to tell you how courageous her mother was.
Anna was born with multiple disabilities, devastating disabilities. We've all read about children like Anna who have been abandoned or shoved here and yonder because their parents or other caregivers couldn't face the situation or deal with the reality of what it's like to have a child who will never meet society's expectations for a happy or successful life. I'm not judging those individuals, I can understand better than most why that happens. Our family has walked in those shoes and I would ask all of you to not judge them either, but to pray for them and their children. In that vein, as strange is it may sound, Anna was lucky, she got the perfect mother for her and her situation.
I watched my daughter's heart break many times over the years. Grief has always been a part of the relationship, starting early on with realization that she had lost the child she anticipated. I know she must have visualized many times how beautiful Anna's life was going to be... the thought of those first milestones, sitting up, walking, talking and looking down the road to the first day of school, friendships and someday even dates and cars and college. Would she want to wear her mother's wedding gown someday or insist on one of her own. A few short weeks after Anna's birth, all those dreams were dashed.
I can't recall a single day that Jamie ever said why... why us? why Anna? why me? I watched her from the beginning roll up her sleeves and learn how to advocate for her daughter. She found the services necessary to properly care for a child with multiple 'un-abilities' and made sure they were in place throughout Anna's lifetime. I watched her fight for nursing care, schools, camps, whatever she could find that would give Anna the best chance at having the best life she could have. No matter how many times the family picked up and moved, Jamie made sure that Anna's services were kept intact as much as possible, fighting different state and local guideines everywhere the family went the first six years or so of her life.
Over the years there were multiple surgeries and procedures, therapies and special equipment. Wheelchairs, in-home nursing and yes, the dreaded short bus were all a part of their lives. Yet Jamie always treated Anna with love, dignity and respect. She took great pride in her. She found the silver lining in having Anna as her daughter and showed all of us who only thought we loved our children unconditionally, exactly what that meant.
This day, I still feel the hurt of Anna being gone. But she lived a life that counted and she gave us all she had in her to give. The last year of her life was by far the most difficult as we saw we were losing her piece by piece and the struggle she made to continue on with us, fighting every step of the way with all that was in her. She was certainaly a most courageous child but why wouldn't she be... look at her mother!
Fly free Anna... we love you and miss you every day.