Friday, July 27, 2012

pink butterflies

It seems a long time ago that I stumbled upon a blog A, B and C's Mom...I read about Joanie and her daughter Carly with great interest. Carly was a little older than Hannah and on the same mainstream journey. It was at the time when I was ansgting over choosing a school for the twins. Things weren't necessarily all roses and rainbows at that stage for Carly at school. Joanie was obviously feeling very worried about ensuring the very best for her lovely daughter. Then one day just a little while later I logged on to see how things were going... and Carly had died. Yep, passed away. I couldn't believe it. I cried. But my tears - they were nothing to the pain of Carly's family. Joanie continues to generously write about and share her journey - because of course life continues, Carly's memory continues, the world goes Finding Our Way provides an insight into life after. I still read it. I still learn from Joanie. Not perhaps the sorts of tips about our daughters with DS that I originally signed up for. But learn I do. About Joanie and Carly and their family. About life and death and hope. Finding Our Way compels me. I read it because I feel a tie to this family - a drive to witness their grief even as that journey reminds me to enjoy what I have. It is life stripped bare. It could be any one of us. I wouldn't want to do it alone and so I bide time with their family. Praying.

I have mentioned before how surviving neonatal intensive care is a battle scar. I continue to wonder when the remnants of remembered fear will pass - to date they can still be revived. So easily. A picture of a weary brave bleary-eyed mum nursing her sick baby in a hospital chair - and I am back there, instantly.  A baby laid out and strapped up as Hannah was before her heart surgery and my breath catches. My mantra follows quickly - B R E A T H E. I see the abyss. I recall the time when I was so terrified of time moving on and with that time my daughter dying that I held my breath. When I breathed it was like stepping back off the cliff face. Back to the verge, to it's relative safety. But of course you never feel safe again. Not really.

Some time ago a mother commented on this blog. Her baby with DS had died. I am humbled and honoured if the Shams creates a bridge for her memories and her child. It is the least I can do.

My pregnancy was the same. I used to envy the pregnant women I met who glowed  bon vivant - deluded that the baby they carried would be born like the fairytale myth we'd fallen for as kids. Not only was it an arduous journey to even fall pregnant - once I was - it was not long before the drs started talking about major heart problems and DS. Oh for blissful ignorance. I tried to make the most of it. To enjoy my pregnancy as if it was my right. But really it wasn't my right. No one has a right to ignorance.

Fast forward a number of years and I get to know a woman with a neonatal diagnosis. A woman of generosity. Her baby is born and there is rejoicing and welcome. A new precious baby. The specific details are not really mine to share - and I'd probably get it all a bit mixed up if I tried but that mother was a warrior for her child. She was an inspiration in the way she created communities around her. We were brought into her experiences. She reached out. It is a tremendous gift. And then one morning there is a post on fb that bubba (home after a long stay in hospital) is not so great - and will be at the local hospital soon.... and then just a couple of hours at most after that, there is nothing. I log on in the early evening to find I have been invited to join a group - I go to the page and wonder at the language - 'memorium' wtf? I have to ask. It quickly becomes apparent that that baby has been freed from her life of tubes and oxygen. She has died.

The connections we make guide us all on this journey and with this passing many will cry. I can't and won't even try to second guess the feelings of her family. I know that I will think of her beautiful face whenever I see butterflies flying free, making our world beautiful, lifting up our hearts. Just like I think of my Mum when I see irises. Awesome. That's what humans are when we are at our best. This baby girl brings that out. I think she always will. She is a celebration that I am lucky to share in.

My friend's next step in the journey will be marked with a church service for her daughter. There are a whole lot of kids and families around Australia who will be there in spirit. Some very lucky ones will go along in person, to take their place as the T21 family. We have said our poor words of comfort - our clumsy attempts to come to terms with this loss, to blunder along in our hope that we might be able to offer some meagre solace to the family. Small gifts. Nothing really, but all that we can do. We reach out too. We know that that action is the most important - even if we stuff it up. In many ways from the moment we start advocating for our children we understand the value of action, no matter how insignificant or inept it might be. You have to start the conversation somewhere. I think this is one Mum who knows that lesson too.

A's celebration calls for bright and pretty pink colours and butterflies...tribute to a life well lived. God speed little one...your angel wings are waiting.

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