Saying goodbye..

It's taken me a while to write this and I didn't know if I would write it at all actually, because I couldn't seem to formulate the words.
You might have picked up from my previous post that a month ago one of Elin's little friends passed away. Her name was Eleanor Rose Wheeler, but everyone called her Ellie (or Ellie-Moo or Moo, or Moo-ster), and she was beautiful.  In 2011 Ellie's parents, Richard and Annie, got in touch with us not long after Ellie was born, through a mutual acquaintance. Like us before them,  they had been catapulted into an upside-down world that made no sense after their little girl was born with profound brain damage. Like Elin, Ellie has Cerebral Palsy in it's most devastating and severe form. The similarities between newborn Ellie and our two year old Elin were such that Annie and myself christened them the 'cosmic twins'. They even looked quite alike, especially when they were both little, though as she grew there was no mistaking Ellie's amazing trademark wild curls.
Ellie's death hit us hard, though she had been bravely battling against all the odds for some time. It was a testament to her strength and incredibly courageous character (echoed by the strength and bravery of Richard and Annie throughout her life) that she continued to defy the predictions of the medical staff for so long before she passed away. As we said goodbye to Ellie eleven days ago it struck me that most people will never have to attend the funeral of a child in their lifetime, a good thing obviously and a position I envy acutely. When you have to say goodbye to a child you have known it changes you. It makes the world seem an (even more) unfair and sinister place. Nothing makes much sense. It makes you question everything you know. You never forget the details of the day, the sheer magnitude of the situation. It's devastating in the truest sense of the word.
 I thought of that poem I hate as I stood in Ellie's beautiful funeral service "Welcome to Holland"(http://www.our-kids.org/Archives/Holland.html) If you don't know it, it is basically a massive extended metaphor for the life of a Special Needs Parent. I hate it because even though I applaud the sentiment, it simplifies the depth of feeling and complexity of emotions that this life brings with it way too much. I do agree that the only thing to do in life is to make the best of a bad situation, that yes our path has deviated from the 'norm' but that it can be just as wonderful. Except that quite a lot of the time, it isn't. It just isn't that easy. As I watched Ellie's family saying an unthinkable goodbye to their daughter, sister, granddaughter, niece and cousin I thought it's not like being in Holland, parenting a child with severe disabilities. Sometimes, it's like being in hell. A hell which no other parent can begin to truly imagine, unless they have been in the exact position themselves.
This is where we are bonded together as parents of children with similar conditions, in dealing with the initial horror of a life changed and then gradually coming to terms with our 'new normals'. We have all been through the same patterns. The obliteration of any kind of post-natal joy, the constant stress from the word go, the fights for help, the hospital stays (and Ellie's Mummy and Daddy had more of these than you could imagine), the helplessly watching your child suffer, the worry, the equipment, the medication, the home adaptions you never believed you'd have to have, the blessing of every birthday, the sorrow of what could have been. We know one another because we are each other.  In the realms of our exclusive little world, in the family of parents we have become, bound by sorrow and despair and great joy that no ordinary parent could ever understand, we are all one person, one child, one family. So when one is lost, then we are all at sea.
Despite this exclusivity of fully understanding the deepest depths of parenting a child with complex needs, I think most people instinctively understand the bravery and courage of kids like beautiful Ellie and their impact on the world around them. Something that will stay with me always from Ellie's funeral were the descriptions of how happy she made everyone around her. How she bound people together with her smile and how she was able to provide a new perspective on the world for all who cared for her. Just how special her place on this Earth was, how important. Six years is not long enough for any child to live, but how Ellie packed such a lot of love into those six years! There are plenty who could only dream of having such an impact after a whole lifetime.
We will miss and remember you always, Ellie, you gave the world so much more than you could ever know. You changed us all for the better and you did it all in six years. Elin's little cosmic twin, you were a shooting star in the universe of all who knew you- shining too briefly but so magical, brilliant, luminous and unforgettable.
Everyone was proud to know you and we are all richer people for it. This is your legacy.
Rest in peace, little Moo.

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