Raising Amelie

My daughter is a thief. Everywhere she goes, she steals little pieces of hearts.

She is only two, nearly three, but she also has the most amazing talent of making everyone she meets smile – everyone. My beautiful, funny, engaging, easy-going, determined and hugely independent little miss of a girl – it’s not surprising people barely recognise me when she isn’t with me. My daughter is Amelie.

When she was born, I knew the second they put Amelie on me and she looked up at me and screamed blue murder at the indignity of being dragged out into the world via a ventouse delivery. I knew, despite the 24hr labour, gas and air induced haze and exhaustion that I was going through. The wonderful moment I had played over and over in my head for the many years of trying and waiting for Amelie did not play out as I had expected it to. My worst fear at what should have been the best moment in life happened in that second. That fear seared through my heart.

‘Is she ok? She looks like…’ Apparently no-one heard the second sentence. Apparently I didn’t say is out loud.  That moment always confuses me because it sounded so loud to me. ‘She looks like she has Downs Syndrome’.

Amelie 2 days old (l) & Bringing Amelie home (r)

My ex-husband and I had celebrated when, after the 12-week scan, I was told that I was ‘low risk’ of having a baby with DS; a 1/600 chance. This was a fear of mine, as I was the grand old age of 37 when I finally got pregnant after a third round of IUI treatment. I knew I wouldn’t be able to cope with a child who had a mental impairment, learning difficulties, developmental delays – whatever you want to call it, I didn’t want it. I didn’t want it for my child, I didn’t want it for my family – I didn’t want it for me. The thought was terrifying. I just wanted a ‘regular’ baby.

Amelie hid her diagnosis from us until her arrival. I’m glad that she did. If I’m brutally honest, I’m not sure what I would have done if she hadn’t. Almost three years on, this is a horrifying thought, but in my defence, I didn’t know what I know now; I didn’t know how much happiness Amelie would bring. I just knew the fear that is perpetuated in society at having a child with DS. I know from others’ stories the automatic assumption, and therefore pressure, that there is to have a termination. I’m glad I didn’t know. I’m glad she hid it from us and I didn’t have to think about making that decision. I’m glad Amelie came into my life with all the joy she has brought with her.

Amelie, 6 weeks old (l) & First photo shoot – 8 weeks old (r)

Don’t get me wrong; it’s not all been a fairy tale bed of roses – not by a long shot. The first weeks and months were a struggle for me; I cried a lot, worrying about what would happen to her, worrying about how she would develop, how she would look, would she get bullied, would she be able to work, would she be an ‘adult child’ I would be walking around with at the age of 70, what would happen to her when I die. Things I wouldn’t have thought about had she not got DS. I was so angry at myself and distraught for ‘giving her’ Downs Syndrome, not making her ‘right’, as I saw it then and I couldn’t change it; I couldn’t take it away from her or ‘make it better’. I grieved for the child I thought she should have been and, if I’m honest, there was some jealousy there of the other mums in the group who had has such an easy ride having their ‘regular’ babies.

But I loved her; immediately and totally.

And those days are mostly gone. I now realise some of those early thoughts and feelings were based on emotion and fear without foundation. I knew nothing. I still have days when I get worried about her future, but I can’t do much but prepare the practical things as much as possible and support Amelie as much as she needs, as any parent would whatever the circumstances. The rest will be down to Amelie.

And Amelie has had heart problems and required a heart operation the day after her first birthday. She recovered well, but has pulmonary hypertension. The result of this, in layman’s terms, is that her lungs don’t work too well when faced with coughs and colds that turn into chest infections. Not very well at all. Last Christmas, I lived at Bristol Children’s Hospital for a whole month whilst Amelie battled bronchiolitis, mainly in intensive care. On day three, she had a severe pulmonary hypertensive attack and had to have CPR – if I had thought Amelie having Downs Syndrome was my worst fear, that moment, the moment I thought I was actually going to watch my precious baby girl die in front of my eyes, made me realise that her extra chromosome was nothing. After they got her back to a manageable level, the doctor came over and said, ‘it’s not been as bad as it could be. Next time there is a chance her heart could stop completely’. I remained standing upright, frozen to the spot, but inside, I was a crumpled heap on the floor. I could hardly breathe. I just wanted my girl back.

30th Dec-15 – managing to hold Amelie for the 1st time since going into intensive care 2 weeks beforehand

Fortunately, after a few weeks, Amelie rallied round and recovered, although she missed a second birthday whilst staying in hospital – an awful day and night she spent being terrorised by some unknown horror as she hallucinated whilst being brought off all the drugs she had been on. She did well over the summer months, but winter is approaching and I have become a paranoid mamma; scared of every cough and sniffle. Asking people to stay away from me, stay away from Amelie if they are ill – an anxious person I don’t want to be. But I have to work and I can’t keep Amelie locked up in the house, so she goes to a childminder a few days a week and to the special needs nursery for a day and a half a week, both of which help her to develop in other ways. A week into the September term, we noticed she had a runny nose and a bit of a cough. After 24hrs of this and noticing that her saturation levels [oxygen in her blood] were becoming consistently low, I took her to A&E to be checked and we spent another ten days in hospital whilst Amelie was kept on oxygen. Luckily, we had caught it before the virus got to its worst; we just about managed to keep her out of intensive care this time.

However, health issues aside, having Amelie has been nothing short of a delight; she is full of character and lately a lot of mischievous fun. She’s very determined and independent and likes nothing more than being able to accomplish something by herself – woe betide me if I try and help her at all when she’s on a mission to achieve something on her own! I love these traits about her and they will stand her in good stead as she grows. Ok, so she’s not walking completely on her own or saying much yet, but she understands everything you say to her, communicates rather effectively and is starting to walk holding just one of my hands, which she has been more inclined to do since she now gets to wear funky winter boots which provide her with a little more stability.

Most days with Amelie are like everyone else’s who has a toddler; a routine of meals, naps, trips out, going to the shops, playdates, nursery and so on. I love spending time with Amelie; she is an awful lot of fun and when the stresses and strains of a busy life get to you, she’s the one you want to hang out with to lift your spirits back up. There are a few extra hospital visits thrown in, but these are getting fewer and further between as she gets older.

Amelie was the first in her group of ‘regular’ peers, to roll over; since then she hasn’t been the first to reach certain milestones. She’s been taking the scenic route, but that’s fine by me.

It’s given me the chance of extra time with her before she runs off and doesn’t need me anymore and I know full well that she will get where she needs to be eventually; after which time, no-one will remember exactly when she started to walk or talk or anything else anymore….except me. I’ve shed an awful lot of tears since Amelie came along; tears of absolute despair in the beginning that she was born with that extra chromosome, tears of fear that I was going to lose her when she was ill, but mainly tears of sheer love and pride that I feel for my girl and all the little accomplishments she has along the way. And when the times comes for her to be able to run away from me, I’ll be like every other parent screaming after her to come back, but secretly delighted that she’s finally found her feet.

I wanted to write this in response to the announcement that the NHS were going to start funding blood tests for pregnant women to enable them to be 99.9% certain if their unborn child had Downs Syndrome. I watched with tears the programme that Sally Phillips made, ‘A World Without Downs Syndrome’, where she spoke about the new blood test and her life with her own 11-year old, Ollie, who has DS. How every single unborn child in Iceland had been aborted whose parents had received a positive result after having the test since it was introduced there five years ago. About how the medical industry seems so hell-bent on eradicating this ‘terrible condition’ I wanted to write something that told what ‘my reality’ of having a child with Downs Syndrome is, although everyone’s story will be different.

I have mixed feelings about it all. I understand why parents abort their unborn children; I’d like to think not, but that could have been me; who knows what decision I would have made if faced with it, the terrifying ‘facts’ about having a child with Downs Syndrome what might mean [note, ‘might’], the pressure not to have her.

What I don’t understand [now I know what it’s like first-hand] is why DS is portrayed as the big bad wolf it is made out to be.

Apart from her health issues and time in hospital, [and nearly all of the children in intensive care and on the cardiac ward with Amelie did NOT have DS, which tells you any child can have problems of any sort] having Amelie has been pretty much like I hoped raising a child would be like. I’ll admit it’s been slightly more complicated on occasion. I’m not pretending that Amelie’s Down’s Syndrome hasn’t made and will continue to make a difference to our lives, of course it has, but whilst parents decide not to continue with pregnancies because they think they know what it will be like and ‘don’t think they’ll be able to cope’, I can assure you of two things; you will be able to cope and you won’t know what it will be like. No-one truly knows what it will be like to raise their own child until they arrive. No-one knows what challenges life will throw at them through their children. No-one knows what they will have to cope with as a parent. But becoming a parent seems to enable you to find an inner strength you may be thought you never had; a titanium coat, if you will, that you shield your child with to protect them as much as you can.

And it’s worth it, so worth it. It’s been a fascinating and fulfilling journey that has brought this little person into my life that I love with a love more fierce than I ever thought it possible to have – and we’re only at the start!

Amelie now

So what for our future? Well, I’m trying to start a new business that will mean I can work from home/close to home so that I can be there more for Amelie; simple things like be able to take her to school when the time comes, pick her up again and be at home if she is poorly or by her side if she needs more hospital time, but still be able to earn some money.

I’ve named the business ‘Ameliebump’ after her.

It is early days, but I’m hoping that, should it be successful, it will be something that Amelie can get more involved in in the years to come and give her a place to work in and maybe manage one day. Although, if I know my girl, she’ll probably be desperate to make it on her own without her mamma’s help! Still, it will be there if she needs it.

As for everything else…well, who knows. When I was pregnant, I had pretty much planned out Amelie’s life before she even arrived, but after all the curve balls she has thrown into the mix, I don’t plan things quite so much anymore. We’re working on getting Amelie walking and talking and learning how to do new things and I hope to finally get a normal birthday for Amelie’s third birthday in January, but I take each day as it comes. I am thankful if it is a good health day and if I get another curve ball thrown at us, I will just try and deflect it with my ‘titanium coat’.

By Jennifer Gretton [otherwise known as ‘Amelie’s Mum’] x