Sunday, October 04, 2015

Down Syndrome Awareness Post 2 - Fragility

Below is the link to an earlier post. I wrote it when the twins were little and the trauma of their early ill health is still fresh and raw. I wrote it as a form of therapy - to carthetise the wounds - to heal. Now 10 years later I have to say that the healing has proceeded and there are many aspects of this earlier post that I'd edit out today. In fact I'm a bit embarrassed by some of it - but it is a part of out story and so I will leave it as is for now.

Instead I shall change the context from which it is read. Falling pregnant was a struggle. For Phil and I there were lots of times of great sadness just prior to finally expecting our twins. Deep dark sadness where we clung to each other, murky scary depths which I felt and struggled to explain to him. But we did it. Falling pregnant didn't end those fears though - as I have already said Twin 1s heart defect put paid to that.

Both babies had serious life threatening illnesses before they'd cracked 6 months. Life threatening. It felt as if our parenting idendities were forged in fire, yes we stood strong and together. I have been to the edge and Phil was there with me. Together we willed our kids through and pulled through ourselves. There are still scars. The fragility of life, the sinking feeling of terror can be roused too easily. It isn't really about Down Syndrome though.... advocating in new situations for Hannah is emotionally exhausting - but it isn't because  she has Down Syndrome - it's because we need to help others understand and overcome their concerns and fears about her having DS. That's where as twee as some of the DS Awareness posts can be (and I am definitely  guilty of those) they are essential.

DS Awareness ideally supports the voices of people with DS - to be heard and responded to. Often due to the nature of the disability it is family and friends carying the baton, advocating for people with DS and fighting for those opportunities. for that audience.

So when very cute indicviduals with DS are in your news feed - remember - it's an important start...because it enabes individuals like Madeline Stuart to strut her stuff on NY catwalks and it just might one day enable  both my children a secondary education where learning; belonging and being valued are more important than chasing marks whichever end of the bell curve you lie on.

Thursday, October 01, 2015

October 1 Awareness - Fear

October is "Down Syndrome Awareness Month" and once again the optimist in me thinks I'll give it a crack - raising awareness, promoting inclusion - for diversity generally and Down Syndrome in particular.

For me, the journey began with fear. We were told that twin 1 had a complete AVSD (atrioventricular septal defect) - in other words - a huge hole in her heart meaning that instead of 4 chambers her tiny heart - at the size of my thumbnail had 1. Oh - and then the cardiac paediatrician asked if we'd had any prenatal testing...cos about half the babies he'd seen with this congenital heart defect had Down Syndrome.

Then all I remember is the feeling - fear, mixed with terror. We drove home stunned. Phil went tot he corner shop and bought me a family sized block of chocolate which I consumed that afternoon. He took up smoking. We cried for a week. As I cried I sewed....a patchwork cot quilt of the alphabet. There was no way that quilt was anyone's but Hannah's. My Twin 1.

And then after we'd regrouped (mostly).... I prayed. Mostly I prayed for my baby to live, and also sometimes for her not to have DS. Mostly though I desperately wanted her to live, whoever she was - I wanted to get to meet my daughter. In the image above - my twins are 10 - and we are visiting Mary Mackillop place with my Dad. I give thanks for my two monsters every day. I still know fear - but I have learned that fear of difference and the unknown alone is misplaced. And I know that facing those fears is liberating, exciting, amazing and enjoyable - yes - FUN is the best way to describe the results.