JO'S STORY

Darcey is a much longed for child. To cut a very long story short, it took several years to get pregnant and there were occasions when I wondered whether I would ever be lucky enough to have a baby of my own. I had invested such a lot of time and energy in just getting pregnant that I didn’t give any thought to what being pregnant might be like or what decisions we might have to make. Hence deciding on whether to have ante-natal screening or not came as a bit of a shock. I remember an emotional discussion with Andy in which I clearly said that I couldn’t cope with a disabled child but neither did I want to risk such a precious pregnancy. In the end we chose not to have any screening and I don’t regret that decision. I thoroughly enjoyed being pregnant and I wouldn’t have wanted to have known what was come to next.

It never occurred to me that my baby might have DS. In many ways mine was a textbook pregnancy (no morning sickness, no weird cravings, and just regular scans because of a small baby which was felt to be familial as neither Andy nor I is very big) , followed by a textbook birth (short labour, gas & air and lots of deep breathing learned at pregnancy yoga). And at 07.47 on 3rd December 2009, our gorgeous little girl was born – weighing in at a slight 4lb 14oz!

Andy knew something was different straight away (he’s a midwife) but I had about 30 minutes of glorious ignorance (which included a brief but fabulous first cuddle) before his colleagues (he works at the Maternity Unit where we had Darcey) gave us the news that they suspected she had DS and, more importantly, she had bowel problems which meant she needed urgent surgery. It is no understatement to say that I went into ‘meltdown’. It felt as if I spent most of the next 24 hours crying. My overriding concern was whether she would live – I asked anyone and everyone we came into contact with in terms of medical staff and I repeatedly asked Andy. I guess I didn’t really understand what was wrong with her so it was not at all clear to me that she would survive. I am not at all religious but felt the need at that moment to have her blessed so whilst she was hooked up to a myriad of machines on the SCBU at Harrogate Hospital, a chaplain said a short prayer over her.

My head was whirling with all sorts of emotions from the sublime to the ridiculous and back again. I blamed myself for having done something wrong during pregnancy. I left it too late to have children. I’m too old. I shouldn’t have had IVF. Do I love her? Do I want her to survive? Do I want to take her home? How will I cope with a disabled child? In particular, I became obsessed by the idea that my partner of almost 20 years would leave me. Andy had wanted children for years and I felt enormously guilty for having given him an ‘imperfect child’.

Before she was transferred to Leeds General Infirmary for emergency surgery I got to hold her again for a short time and I remember feeling as though a wave of unconditional love hit me. As I stared at my tiny fragile child I knew in my heart that I would do whatever it took to give her the best possible life.

By the next morning, I was in stubborn ‘we can do this’ mode. We spent a lot of time talking to each other in the following days and we agreed to be honest with each

other about how we felt and not to hide our true feelings. I do believe this openness helped us both to come to terms with the diagnosis although we dealt with it in very different ways.

Again to cut a very long and not particular pleasant story short, Darcey had her first bowel operation at 1 day old and then spent 2 hellish weeks in the Surgical New Born section of ICU. She was eventually transferred to SCBU at York so that she could gain some weight before coming home. At the time, I just wanted to bring my baby home - hopefully in time for Christmas – and I was not thrilled about spending more time apart from her. In hindsight, the time spent in SCBU was invaluable and did loads to help us come to terms with the DS diagnosis. The SCBU Team were fabulous from the word go and by the time we came home (on 23 December so I got my Christmas wish!) we knew lots more about DS and had been referred to what felt like every Health Professional in York!

Most of the next few months were spent caring for our still very small baby and taking her to a plethora of hospital appointments. Her bowel problems meant she required outreach care from the specialist team at LGI and 2 further operations at 8 and 24 weeks. Both involved a stay of about 5 days on the Children’s Ward at LGI . Thankfully Darcey is a fighter and she made good recoveries from all her ops.

By the end of her first year, she was making good progress but her health was still fragile and it felt as though we spent much of that first winter lurching from infection to infection. It took its toll as I began to wonder if this was what our future looked like. I struggled to cope and sought support from HomeStart and with the help of our fabulous volunteer, got a little perspective back.

My overriding memory of the first year is my negativity. I focussed on what she couldn’t or as I thought wouldn’t ever be able to do. When grandparents looked forward to buying her her first bike, I dismissed it saying that she would never be able to ride a bike so what was the point! I had read somewhere that children with DS can struggle with balance and co-ordination so learning to ride a bike can be difficult. If someone said that to me today, I would immediately start working out how we could break down riding a bike into small steps to be able to teach Darcey how to do it and I would continue to try to teach her until she could do it - or for as long as she wanted to try. There isn’t anything she won’t ever be able to do. She has no limits. The limits are mine and my perceptions of what’s possible. If having Darcey has taught me anything, it has taught me that anything is possible. With the right support Darcey can do anything she sets her mind to and my job as her Mum is to help her do that.

Stuff I would like other new parents to know…

My pet hate is when people refer to her as a “Down’s girl”. She is NOT a Down’s girl. She is a girl who has DS. She is not defined by her disability. It is not the beginning and end of who she is, either now or in her future. She is Darcey - determined, cute, sociable, happy, laid back, loves music, loves books, loves singing and dancing – my beautiful daughter.

My top tip for new parents of children with DS is if you choose to learn and use Makaton which I would strongly encourage, don’t give up. Persevere. We have signed consistently to Darcey since she was 6 months old (I went on a proper 2 day Makaton course and then taught Andy) but it wasn’t until almost a year later that she signed back. Once she started she didn't stop until speech took over and being able to sign meant she can communicate whilst her speech developed. She doesn’t get as frustrated as she might if she couldn’t tell us what she wants.