Loving Life with Lucinda

Introducing me, I am Nikki,

I live in North Somerset, and I am mum to Zack (7), Evan (nearly 6), and Lucinda (3). Lucinda has Down syndrome – or how I like to see it – designer genes!

Abseiling for Ups and Downs Southwest

Can I begin by saying there is nothing ‘down’ about Down Syndrome If only the man who founded it had been called Mr. Sparkles (or something like that) instead of Mr. Down. Sparkle syndrome would have such a more positive vibe and sparkle my Lucinda does. She is the sparkliest of sparkles, and along with her brothers are my entire world. She has the most amazing eyes which look like deep pools containing sparkly little galaxies. But she sparkles not just from her eyes, from deep, deep within and when she snuggles with me she kind of melts into me – when I wondered what low muscle tone was, I obviously feared all the worst things, but this melting into me thing is amazing!

Ok, so our story, Lucinda was a much-wanted baby. Having lost two pregnancies before her, it was extra special to finally be, successfully pregnant. I didn’t have any screening as knew I would want her no matter what. I had a strange feeling looking at my 12-week scan photos that my baby had Down Syndrome – I remember telling my mum my thoughts, and she simply replied ‘what will be, will be, she will be loved, and if she does have it then we are all here with you’. How true that was.

At my 20 week scan, my world fell apart. The sonographer detected a heart defect and referred me for more detailed scans. There are literally no words on this earth like ‘I think I can see something wrong with your babies heart’. They are the hardest words I have ever had to hear. We hadn’t wanted to know the sex of our baby, but once they said they could see a heart defect, I felt like I needed to know ‘who’ we were rooting for. Every part of me wanted it to be my heart, not hers – I still do. The sonographer wrote our babies sex on a piece of paper and stapled it shut so we could decide later, back at home whether to look or not. Back at home, we asked Zack to open it for us, and we learnt that we were expecting a baby girl 💗. I will cherish that ripped (thanks, zack, I know you were only 4 but carefully would have been fine.) piece of paper forever.

As time went on, we learnt that our babies heart condition was called a Complete AVSD, and was often linked to babies with Down syndrome. We were given a 1:3 chance of Down Syndrome, although I’m sure they said ‘1:3 risk’ which instantly makes you feel like there is something to fear. Words can be so powerful – change the terminology grrrrrrrr! – Anyway, I digress. We were informed about how to recognise heart failure and to expect it within the first six weeks of life, poor feeding & weight gain, breathlessness, and the need for heart medication until she was big enough for surgery. Although I always knew I wanted her this was incredibly hard – it wasn’t quite the experience I had dreamed of – I was extremely worried and stressed – one minute about down syndrome, the next about her heart. We were told she would require open heart surgery within the first six months of life, and possibly earlier if she did indeed have Down syndrome.

Fast forward through a stressful pregnancy to May 2014 – my beautiful baby girl was born! She entered the world a healthy 6lb 3oz – designer genes intact and absolutely perfect! I can’t lie; I did feel disappointed that she had Down Syndrome. It took a few days, and I still hate myself for that. I loved her so much, that bit was never in question but I was scared. She breastfed straight away like a trouper – I had been told this would be highly unlikely – what a little star! (and she continued to be exclusively breastfed – I only stopped when she was 14 months old, purely due to the arrival of more teeth!)

Abseiling for Ups and Downs Southwest
Abseiling for Ups and Downs Southwest

Lucinda continued to do well. She didn’t go into heart failure, and she had good weight gain. We were booked in twice for her open heart surgery – the first time was canceled and we were sent home due to no beds. Second time with all consents signed they made a last-minute decision that due to her doing so well she could wait until she was older – our lives are thrown upside down once again we were sent home. I knew it was good news, and I was supposed to feel relieved, but I didn’t – I really, really struggled with this.

Fast forwarding again, Lucinda is now 3. She has done so well that she still hasn’t had her heart surgery. She will still need it one day and that day is going to floor me – but for now she keeps good health, is happy and healthy – so it’s appreciating every single day of that which is how I keep going!

Lucinda attends two preschools. She goes to Springboard, which is for children with additional needs – here she is in a really small group of children and gets lots of intense and specialist intervention from the staff to support her with her learning. She also goes to our village mainstream preschool where both her brothers went – here she is one of many children, and together with her 1:1 worker she gets the ‘typical’ preschool experience. She loves and thrives at both. This time next year she will be starting school, I am hoping this will be our village mainstream school where her brothers go. She is part of her community, and I see no reason why she won’t thrive in the mainstream – I fully believe in her abilities. With the right support, she can be whatever she wants to be. I will ensure she can grab every opportunity open to her with both hands.

Lucinda is delayed in her learning compared to her peers (doesn’t the saying go ‘comparison is the thief of joy’?) but she is progressing every single day, and I am proud of her every single day. She is now walking and getting stronger with this all the time, she uses Makaton brilliantly, and her speech is emerging. Yes she has lots of appointments, but I really don’t mind this – lots of people keeping an eye on her health and development is fine by me. It means I get lots of opportunities to sit for ages and talk purely about her, and with her being my favourite subject – this is no hardship. I am lucky that I have lots of people around me that believe in her, and are as passionate about this journey as much as I am. For the amazing times and for the tougher times – my whole family is amazing, my friends, the staff that support her, and Ups and Downs Southwest – who have been there since day one.

Lucinda literally loves her life, a cliche maybe – but the truth absolutely. When she laughs, her whole body shakes from within – its truly infectious. She is adored by me (you may have got that bit by now) and all her family, and often lots of strangers too! Sometimes I am driving along, stressed by life and I catch her little face in my mirror – her perfect little smile, usually bopping away to some awful song her brothers have flicked the radio over to – she is my calm. Her brothers adore her, and their lives are enriched by her being their sister, as they enrich her life. Having two big brothers, she has, on tap lots of love and support. She learns so much from them (ok, so I am in two minds about this.), and I truly believe she is already one of lifes best teachers herself – she has taught me to slow down and take things a day at a time, which I never could do before having her. She has taught me to live in the moment and celebrate things I took for granted before. She learns a little slower than her peers but so what? She gets there, and she has made me question why on earth are we as a society are always in such a rush anyway? Childhood is precious, why not take our time with each stage and enjoy each stage for longer? She is teaching everyone that meets her – challenging perceptions daily.

Abseiling for Ups and Downs Southwest
Abseiling for Ups and Downs Southwest

I truly think that her extra chromosome is stuffed to the brim with magic. I say that because I find it hard to put into words (despite having written a full essay here) to describe how amazing she actually is. She lights up the lives of everyone around her. I literally don’t know how a person does that? It’s a mystery to me. So it must be magic. She absolutely IS pure magic 💗💗💗

(I feel a bit like it bursts into a Take That song at the end)…

Nikki (Lucinda’s Mummy)