Trisomy 18 and how it has shaped what I do

730694_10151496940568745_1300470035_nOn 22 November 2012, my second son was born. It had been a difficult pregnancy as at 21 weeks during the scan he was diagnosed with an omphalocele. My beautiful home birth I had planned  and that restful, peaceful babymoon period I had dreamt of, fell by the wayside. More than that it was shattered into a million pieces, it died – I had to grieve for it.

My worst nightmares came true, regular visits to a hospital an hours drive away, poked, prodded and belittled. It was scary, I was scared and had such an influx of emotions negative and positive all coming at once. I had to face the prospect of not just a hospital birth but an induced birth.

Quickly I had to work out how I could make this into a something that felt safe and would bring warmth to a very cold place.

It slowly dawned on me what a positive birth meant – not the birth you WANT, but making the absolute best of the birth you have. I also realised that there was no real support antenatally for someone like me – having to dig deep , face fears, resolve them. Find strengths buried deep inside and somewhere where I could just let it all out.

I had discovered and read about Birth Art at some point along the way and noted it as something to look into and it was 8 months after Bryn died that I was fortunate to get on a Birth Art Cafe Mentors course. I was blown away by it – the power of sitting for four days with a group of women, being able to open up, indeed feeling safe to do so, taking a risk, and even more important learning how to explore feelings and emotions through art. We covered so much more and I came away determined to bring this to women in Suffolk.

It has been a slow journey, I lack confidence (I am working on that) , I lack focus (I am working on that) but most of all I  am on a path of grieving riding the highs and lows of life.

This year I have turned a corner and am feeling more in a place where I can start giving back to others, working out a way to offer Birth Art and all its benefits to others.

Today is Trisomy 18 Awareness day – it was discovered when Bryn was 5 days old he had this rare life-limiting condition and that he would likely not make his first birthday. Today I want to celebrate him and share a little of how much he has left me – the drive and determination to hold a space for other women to find their strengths, release their fears, to have the opportunity to sit in a safe space with other women and really discover themselves.

Find out more about Birth Art here. Read my blog on Bryn’s charity page about the day we found out about his Trisomy 18 here