Exactly one year ago today we said goodbye to you Birdie. But you are here- we know that you are. In our dreams. You are the sky. You are the birds that fly in the sky- ever so gently and cautiously flittering from branch to branch. You were of this earth for 2 short years and yet you left a significant impact on every single person that came across your path. Did you know you left behind a legacy of strength and grace and pure love?
You were the 9th person in the world diagnosed with a rare metabolic disorder called Acyl-dehydrogenase 9 deficiency. No one could figure out what was wrong for so long. No doctor, no specialist, no surgeon, no one in the whole world. Your parents and family were puzzled. You had been born a perfectly healthy baby girl, yet within hours they realized something was not right.
Finally the diagnosis they had been waiting for came. It was the worst possible news that a parent could get- their worst nightmare- come to life.
But your parents, dear Amelia- well- you already know. They are two of the bravest, most courageous people I have ever known. It didn’t matter that the doctors couldn’t say exactly how long they could expect you to live. They didn’t focus on how much time you had left, never felt sorry for themselves, that they had been dealt a cruel hand. Instead, they praised and thanked God for you and focused on loving and inhaling you and living each precious moment that they were given with you.
They loved you in a way that was beautiful to witness. Everyone did. For a brief moment in time you were always there. At the beach on a summer’s night- bundled up in your stroller- sitting on the sand next to us- around the bonfire. At birthday parties like the Frozen party- where you stole the limelight from the birthday girl. At every family gathering and holiday- always smiling- filled with an inner radiance and light.
You never knew a life without shots, frequent hospital stays in and out of the emergency room, doctor’s visits, hooked up to your port- yet your soul seemed unencumbered. You emanated love and grace – not sorrow- not pain- not despair- not sadness. Instead, you knew love every single minute of your life- each one of us made sure of that and love you dearly we did- showering you with gifts, directing all of our attention to you, we’d pass you around from arm to arm and talk to you- “hello Mamas!” You learned to clap and wave and throw “besitos.”
Thank you for teaching us how to live Birdie. For your lessons in abundant and unfiltered love. For that final lesson- for showing us that miracles do happen and perhaps in ways that do not meet our expectations.
That final gift that we thought we gave to you- your Superhero birthday party that was quickly put together in less than two week’s time – for over 250 people, complete with a step and repeat banner, photo booth, cake, goody bags, donated food and beverages and even a real live Tournament of Roses Rose Queen?
Looking back now- I realize it was you who gave us a gift- not the other way around. For it was a day filled with the purest and most abundant love I have ever felt. I never got the chance to tell you that it might have been one of the best days of my life. How lucky I was- we all were really- to bear witness to such a miracle.
Fly high our Birdie- fly high.
With much love from all of your family