JACQUELINE'S STORY

My beautiful daughter Florence had her 3rd birthday the day before I sat down to write this account so it seemed a perfect time to reflect on the journey we have been on for the past 3 years.

I was lucky enough to restart a relationship with the love of my life after 12 years without contact; we lived in different parts of the country so I moved to Derbyshire from York to resume a life together. After a year I was lucky enough to fall pregnant, sadly at 12 weeks I had a missed-miscarriage followed by 4 traumatic days in hospital.  After that I was unable to get pregnant and 4 years later we went through IVF and were amazed to find it worked first time and I was pregnant with twins.  I was so excited. 

We opted to have all the nuchal tests as I was 37 at the time and was aware of an increased risk of Downs, I was someone who couldn’t have coped with anything different and would have decided to not continue however my husband thought completely different so we agreed not to discuss unless we had to, I was so relieved when all the tests came back low risk.  I just enjoyed my pregnancy and imagined these two perfect little babies in matching outfits, we named them early on so I could visualise how life would be.

At 32 weeks I spontaneously went into labour, all went smoothly and I had a natural birth which was wonderful.  Although the babies were small, Zach at 4lb 1oz and Florence at 2lb 8oz they were gorgeous and all appeared well.  They were taken straight away to special care and I was left to recover and share the news with my family.  After a few hours we got to see the babies, they were just wonderful and I was so happy, they were truly beautiful babies and showed little sign of being prem, particularly Florence. 

When I couldn’t sleep I went to see the babies again and whilst looking at Florence she pulled a very alarming face, I thought I was mistaken as the first thought that sprung to mind was Downs but it couldn’t be, our tests were fine.  I checked all the notes and there was nothing there so I assumed I had imagined it and said nothing to anyone.

The following evening the paediatrician came to see us to discuss the twins, he went over Zach just growing and getting stronger and then said I need to discuss your little girl, the second he said it my heart sank and I started to cry, I knew what he was going to say before he did, my husband didn’t have a clue, it was just a terrible, life changing moment for me.  I was devastated, why my beautiful little girl.  She looked perfect; I couldn’t tell by looking at her, the majority of the nurses said they would be doubtful as they couldn’t see it so the tests may come back clear but I knew they wouldn’t, one of my worst fears had happened.  I cried and sobbed constantly, I was just inconsolable, everyone was being so positive and giving me such reassuring stories but I didn’t want to hear them, they didn’t understand because it wasn’t their child who had this label it was mine.  I felt I was expected to just get on with it and be happy but I couldn’t, I was so angry and sad, why our baby after everything we had been through to get her, why us when there seemed to be so many other people with perfect babies who I deemed less deserving.  I was asked by my sister if I loved her and I stupidly said my honest reply of I didn’t know, she was horrified I think which added even more to my guilt and sadness.  The hospital gave us so much literature but I couldn’t even look at it, the stereotype in my head was so strong I didn’t want to see it on paper and relate it to my daughter.

My husband had such a different view, he just loved her and accepted her and one day left a DSA magazine on the coffee table, looking up at me was a black and white photo of a beautiful little baby, I never expected Downs could mean beautiful, even though my own little girl was I thought I was just not seeing straight.  From that day I started to open up more and gradually started seeing lots of pictures that were just of children, nothing scary, just children.

After 3 weeks there started to be problems with Florence’s feeding, she wasn’t digesting anything and after many scans etc. she was found to have a blockage in her bowel.  She was rushed to Nottingham where she had major surgery the following day.  I thought the hardest day was her diagnosis but seeing her whisked off in an ambulance with the realisation she was so tiny to come through such a thing I was petrified, my little girl, I was just filled with love and worry for her, she was so fragile to deal with so much.

In true Florence style she was a fighter and recovered amazingly, she was transferred back to derby and just went from strength to strength, she was discharged after 8 weeks, still only weighing 4lb but I was so happy my beautiful little girl was coming home to be with her twin brother where she belonged.

I don’t think I ever accepted the diagnosis until I thought I might lose her and then I didn’t care about any label so long as she survived.

Florence has been, and is an amazing little girl; she sat at 10 months (8 months corrected) and started crawling at 11 months despite only weighing 12lb by her 1st birthday.  She started walking at 2 and now, at 3, words are starting to come together, slowly I admit but I can cope with that. I don’t say every day is easy, I very rarely even remember she has downs but there are occasions where somebody or something reminds you, I no longer even care.  I used to get angry about all the clichés and comments everyone feels they need to make about special babies for special people, how we cope when they couldn’t, how loving ‘they’ are but now I just ignore it.  I was one of those people who just didn’t understand and I am ashamed to say now was very single minded and blinkered about anyone ‘different’.

Florence has truly enriched our life and I think made me a better person for it.  I have met some wonderful people through having Florence and I now have an understanding and empathy for situations that I would have previously to my shame never thought about.

A year after the twins birth I had another little girl Matilda.  We have a very busy house with 3 toddlers but they get on wonderfully and already have such a close bond that I am reassured that Florence will be safe and protected as she grows up.

I can honestly say I do have 3 wonderful, beautiful, amazing children and I don’t differentiate between them, they are all equally special and equally loved.

 

I am only writing this in such a frank, open way that I appreciate doesn’t paint me in the best light at the time of Florence’s birth but I am sure I’m not the only one who felt like that and I thought it was important for new parents to understand it’s okay to be scared, have doubts or be angry, time changes things and it doesn’t seem half as scary 6 months down the line.

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