Soft.org Facebook Soft.org Twitter Soft.org Instagram
Soft.org Facebook Soft.org Twitter Soft.org Instagram
SUPPORT DONATE

Telephone: 07731651970:

enquiries@soft.org.uk

Our Family Stories

Connor Adam



Born Asleep 13th June 2001

I wrote Connor’s story many years ago for the SOFT UK Newsletter, when I was still in the aftermath of a very raw grief.  Rather than reprint that, I thought it might be good to write from a different perspective, as we look towards celebrating what would have been his 18th birthday in June 2019.

My pregnancy with Connor was not planned.  I was 23 years old and only in a somewhat casual relationship with his father.  I was busy working, studying and being young!  Enjoying life, spending what little I earned and definitely not focussing on having a baby.  In fact I actively did not want to have children.  I didn’t feel it was for me at all.  I had all sorts of ideas. 

To say the news of the unplanned pregnancy hit hard it a bit of an understatement, especially as I was at least 15 weeks when I realised.  But from the second I did that test, it was love! 

To find out 5 weeks later that he had Trisomy 18 and it was likely I would lose him I can only describe as feeling the world implode.  I still remember walking out of that hospital and not understanding how people were still going about, traffic was moving, people were chatting.  I couldn’t understand. How could they? The world had stopped.

How to describe a Trisomy pregnancy? I really don’t know…. Can you even do that to someone who hasn’t had one…..?  I made up my mind to try and enjoy it and do ‘normal’ stuff like buying clothes and going to antenatal classes.  But it was scary…… holding your breath every time they popped that doppler on. …. And the fighting…… fighting with doctors to let us have a c-section, fighting with paediatrics to remove the DNR…. And the not knowing whether to be excited or devastated… or both… at the same time.  It wasn’t easy.  But those are absolutely treasured and precious memories of the only time I had with my gorgeous boy and the time of my life that made me who I am.

That’s what I try to remember now, 18 years on.  My son and my experience being his mother created all the rest of where I am today and my wonderful family. 

Connor was born asleep on the 13th June 2001.  I was scheduled to have an elective c-section on 12th June, but had felt no movement on 11th and attended the Maternity Unit.  Unfortunately it was too late.  The umbilical cord had prolapsed and failed. We had argued over my dates a LOT, I believed myself to be 41 weeks, they thought I was 38.  It is a source of regret that I wasn’t successful getting an earlier section.  But perhaps it was kinder than putting myself through the experience of a hospital who said they wouldn’t care for my son?  It hurt badly at the time that I couldn’t just have had those few minutes with him, but it is not something I have carried with me as pain through the years. It was not meant to be. 

The first year was unbearable and in all honesty I have little memory of it.  I decided I had to take a sabbatical from life to try and find some sanity and went to live in Peru for 8 months. It was tough as I was an emotional mess, but it really helped me get some sort of perspective back and realise that perhaps I could actually make it through this and come out of the other side.  I also sat my finals for my BA degree that year, another thing I don’t clearly recall but I passed!

When I came back I decided to retrain and applied to be a social worker, hoping to specialise in disability. Fast forward a few years, a lot of exams and a lot of special little people, I somewhat decided to take the job home with me and adopted my sons Matthew and Ryan.  Both boys have developmental difficulties and life is full of challenges and crises!  But those early battles with neonatal and paediatric services stood me in good stead!  I do better research than the FBI and am not afraid to fight! We completed our crazy family in 2016 with the somewhat surprise addition of little Marlowe!  Having a rainbow pregnancy 16 years after my first was still fraught with all the fears and emotions associated with a pregnancy loss!  But we survived and she’s now a bouncing 2.5 years old!

Throughout the past 18 years, SOFT UK has been a massive part of our lives.  I attended my first Family Day while I was expecting Connor and have a strong memory of the beautiful Annie sitting on my knee and me thinking how wonderful it would be if my child survived too!  I went on to volunteer for SOFT as a fundraising administrator and eventually became a Trustee for several years. We’ve always attended the Family Days here in Scotland and feel very fortunate to call the families here our close friends.  It feels just like a family and our children have all grown up together.  Marlowe attended her first family day at 1 month old! In 2018 I returned to SOFT UK as Project Manager.  It feels lovely to be back, catching up with all the familiar faces and meeting all our new youngsters!  There have been so many developments in medicine, care and research.  I really hope that my contribution in this role will be to continue moving things forward for our families, so our children get the very best chance to thrive and parents receive a better standard of care than we did all those years ago!

Demi x 

 


Created: 22/01/2019 16:18

Back to family-stories

Registered Charity: 1002918 (England and Wales) SC043341 (Scotland). Copyright © 2005 – 2017 SOFT UK. All rights reserved.