She’s so beautiful

“She’s so beautiful, she doesn’t even look like she has Down syndrome”. I hear this a lot. It’s meant as a compliment and I take it as such because she is beautiful. And she looks like she has Down syndrome. The two are not mutually exclusive.

I sometimes wonder why people like to tell me Scarlett doesn’t look like she has Down syndrome. It’s not true, I know enough children with Ds to be able to recognise the shared characteristics and we’ve seen enough Doctors who have known just by looking at her that she has Trisomy 21. I like way Scarlett looks and Down syndrome is part of that.

You see, if Scarlett didn’t have Down syndrome then she wouldn’t have those beautiful dark almond shaped eyes which seem to sparkle when she smiles. She has her Daddy’s eyes for sure, a quick look at Simons baby photos and you see it instantly. She has his nose too. And his hair. Or at least his hair before he lost it.

She has my Dads smile. A Jones smile. It’s warm and kind and pulls wide with thin lips. And because of her lower muscle tone, her little tongue pokes out, sometimes resting on her bottom lip when she’s tired. And when she’s feeling cheeky she tips her head to one side, smiles that beautiful smile with her tongue poking out and eyes sparkling and it just melts me.

She giggles when I kiss her neck. It’s a little shorter and wider than some other babies and it is as soft as velvet.

Scarlett always has her sleeves rolled up, her arms and legs that little bit shorter. It always makes me smile, she looks like she’s rolled them up to get down to some serious playing. I might have to learn to sew as she gets older, another skill to add to the many I have learnt through being Scarlett’s Mum.

The palms of her hands have the single crease, common in those with Down syndrome, and her fingers are a little shorter. She has beautiful hands, in those first few weeks I would marvel at how tiny and yet perfectly formed they are, tracing my finger across her single line.

Several years ago, a friend told me that he would be disappointed if people couldn’t tell he was gay. He felt it was an important part of who he is, a part of him he felt proud of, he didn’t want people to mistake him for a straight man because that isn’t who he is and why would he want to hide who he is? I think perhaps that’s how I feel about Scarlett. It’s not the 1960’s, homosexuality is no longer illegal and we do not hide people with Down syndrome away in institutions. We are out and we are proud. Disability is no longer something to feel uncomfortable about, we should talk about it, acknowledge it. It’s part of life. It is part of our life and it brings so many wonderful unexpected positive dimensions to our life, how could we possibly ever see it as a bad thing?

So you see, to me, Down syndrome is just one of the many things that make Scarlett who she is. I don’t see it as separate. She looks like Scarlett, like Simon, like me, like a little girl, like she has Down syndrome. They all sort of mix together to make Scarlett. Beautiful, perfect Scarlett.

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Not that different

Like many expectant parents we took part in anti-natal classes in preparation for the birth of our daughter and as I was new to the town I was keen to meet other new Mums. At the beginning of the first class we each had to talk about our pregnancy, due date and such as an icebreaker. Each expectant Mum took their turn and talked of how they coped with pregnancy and their excitement and nerves about the birth. I wasn’t sure what to say when it came to my turn. Should I tell them about the complications? That we knew there was a possibility that our baby might be born with some problems? Would that make everyone uncomfortable? Or should I just skip over that bit? I opted for a brief explanation without too much detail but to focus on how excited we too were about the arrival of our baby. I’m not sure how well I pulled that off, I was feeling pretty nervous at that point and we already knew there was a good chance Scarlett would have to be brought early.

We only made one class, I was induced a couple of days later due to complications and Scarlett was the first of the group to be born. We emailed the other couples a day or two after Scarlett’s arrival to announce her birth and also to tell them that she had Down syndrome. It was a difficult email to write. We didn’t really know these people but we were intending on meeting up with them once all the babies were born. We wanted to share our delight at the birth of our beautiful girl but felt it was best to say about the Down syndrome diagnosis by email rather than when we met up with them. The telling people bit in those early days was something we both found difficult – how to do it, what to say. It was difficult to choose the words that conveyed how we felt when we didn’t really know how we felt and how we felt seemed to change from hour to hour. We wanted people to know how very much in love with Scarlett we were, that although we were scared and overwhelmed we did not feel sad. We didn’t want people to feel sorry for us, we had lots of feelings but sorry wasn’t one of them.

Those first few weeks for us were tough as we tried to understand Scarlett’s diagnosis of Down syndrome and her heart condition. We felt like we had a mountain to climb but didn’t really have the right equipment or expertise to do it. We were so wrapped up in our own story it was difficult to comprehend that life was still going on outside our Down syndrome bubble. The first few times I met with the Mums from the anti-natal group was difficult for me. As they discussed the challenges they were facing in feeding and sleeping I wanted to scream “at least your baby doesn’t need open heart surgery”. As they talked over the pro’s and con’s of reusable v’s disposable nappies I wanted to shout “it doesn’t matter what nappies I use, Scarlett has Down syndrome”.

I persevered. I could have slunk away and mixed only with other Mums facing the same challenges as me, but something made me stay. And over the following weeks and months I learned something very important from this wonderful group of ladies. I do not have exclusive rights to worrying about my child. We all worry. We all watch closely for clues that our children are going to be alright, we all read crap on the internet we shouldn’t do and we all worry our babies are developing at an expected rate. We all had the same anxieties about leaving them with a sitter for the first time or starting them at nursery. We all have insecurities about if we are doing a good enough job (we are, all of us, we’re brilliant Mums) and we all struggle to manage our often complicated lives filled with work, relationships, housework, family, paying bills and all the other things that are part of life. We all worry, we are Mums and that’s what we do. And even though some of my worries and challenges are different, they are not any more significant or important than anyone else’s.

And I realise more and more that Scarlett isn’t always the one falling behind, she has strengths and weakness just like all the other babies. While she may be the last to crawl and she isn’t as sophisticated in her play yet, she is one of the best sleepers in the group – and a good night’s sleep cannot be underestimated. She is also a fantastic eater, willing to try almost anything despite her mother being a less than proficient cook. She gives the best cuddles in the world, she wraps her arms around tight and pushes her little nose into my neck in a way that makes me never want to let her go. Her speech is also coming along nicely, she babbles away and even understands a few words. And while the other babies are off exploring with their new crawling or walking skills, Scarlett spends her time focused on people and faces (as is quite common for babies with Down syndrome). I often hear that people with Down syndrome can be more emotionally developed than the rest of us, more in tune with others feelings and moods and so while she sits, less mobile than the others but still taking it all in, she is laying the foundation for important social skills later in life.

So in this last fifteen months, this wonderful, diverse, laugh out loud, kind and sensitive group of wonderful women have become some of the best friends I’ve ever had. We swop tips on feeding, weaning, recommend toys and online sources of lovely baby clothes. We talk about how motherhood has impacted our careers, relationships, bodies and social lives. We laugh at our poo stories and cry when it all get too much. We get drunk on girls nights out. We celebrate each and every success our babies achieve – as they learn to sit, crawl, walk and talk.   Yes, sometimes I feel a little pang that Scarlett is often the last to learn some of these skills, but that short little stab is far outweighed by how happy it makes me to see her playing with the other babies as just one of the “gang”. And I love those other babies, I feel happy when they reach another milestone and I look forward to seeing them grow and learn and spread their wings. The fact that this group of friends do not completely understand what it is to have a child with a disability, for me, is a positive thing. They remind me and allow me to focus on just being a Mum, having a family, doing all the things that everyone else does.

So as much as I hate to admit it because it isn’t very interesting or very glamorous …. It turns out we’re really not that different. We’re pretty ordinary, my wonderful family and I. And I might not have realised that quite so easily if it wasn’t for my awesome Mummy friends.

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The very, very, beginning

Scarlett was born at ten past ten in the morning by caesarean section three and a half weeks early.   The moment I saw her, as they lifted her up over the sheet and I reached out and touched her tiny leg, I knew I was in in trouble. Crazy, mad, deep in love, trouble.

They took her to the other side of the room to clean and weigh her and Simon went with her so she wasn’t on her own. She came back to me wrapped in a blanket with a little pink hat on. I felt like I already knew her, we’d already had such a journey together. I felt like I’d seen her face a million times before. She was perfect.

It had been a difficult pregnancy. They call it morning sickness but I call it all bloody day, all bloody night sickness. I struggled to cope with anything that didn’t involve lying on the sofa eating crisps. I had previously had an ectopic pregnancy and so spent the first few weeks terrified, but a six and then twelve week scan allayed any fears I had. We chose not to have the nuchal translucency (NT) screening offered to all pregnant woman at twelve weeks which gives a probability score of the likelihood the baby will have Down syndrome. For Simon the decision was an instinctive one, he simply didn’t want or need to have it.   The decision wasn’t so straight forward for me; I researched the screening process and the results it gave, discussed it with friends and family and subjected Simon to endless scenarios of “how would we feel about this result?”, “how would we feel about that result?”. For me, in the end, it came down to this: the NT screening does not give a definitive diagnosis of Down syndrome, it simply gives a probability. We may have been given a 1:1,000,000 or a 1:70 or a 1:4 but it would never give us an actual answer. So for an Accountant who prefers to deal in absolutes, the test seemed meaningless to me.

With hindsight I went to our twenty week scan naively. I was excited to see our baby again, we were pretty sure she was a girl and had been referring to her as “her” for weeks, but I was keen to know for sure…I wanted to start shopping! It didn’t really occur to me that there would be a problem, that it would be anything other than another lovely chance to see our girl. But this scan felt different, I watched the sonographers face rather than the screen. Something was wrong.

Ventricularmegaly. It took me hours of practice to learn how to pronounce this. Ven-tric-ular-meg-aly. It felt important to be able to correctly say it. It basically means big ventricles. The little spaces in Scarlett’s brain containing fluid which should measure 10mm measured 11.5mm; classified as ‘mild ventricularmegaly’. The Doctor explained that we would need regular scans to check if the ‘vents’ were getting bigger and putting pressure on the brain and that while in most cases big vents didn’t mean anything in some cases it could be an indicator of a disability or learning delay.   I was devastated. I cried for days, I could barely get out of bed. And then I started researching. I read everything I could find on the condition and learned that there is a possible, but unproven, link to Down syndrome. Perhaps it was instinct, I don’t know, but I had a feeling and even discussed this possibility with a Paediatric Doctor – my “feeling” without a clear diagnosis, however, was not considered enough to go on so my concern was quickly dismissed. We were offered an amniocentesis, where a needle is inserted into the tummy to test for chromosomal conditions, but we declined. The idea of a giant belly needle (I’m sure the reality was nothing like this) terrified me, as did the risk of miscarriage at 1%.

Scarlett’s early arrival was not linked to the brain condition, but because we were having so many scans to monitor this, another issue was picked up at around 32 weeks that the umbilical cord was not working efficiently. We were told that we would now need to have weekly scans and that I should keep my hospital bag with me as they would be making a decision each week if Scarlett was safer “in or out”.

I panicked. My first thought was that we didn’t have a pram. Or cot sheets. And the nursery wasn’t finished. And that I had absolutely no idea how to look after a baby and I thought I had a few more weeks to read the baby books and suddenly I might only have a few more days…. How do you change a nappy?!?  Our trip to Mothercare that Saturday was like a mad episode of Supermarket Sweep, I was frantically grabbing stuff off shelves and throwing them into the basket shouting at the sales assistant “the baby might be coming next week!”.  We chose our pram because, well, it had four wheels and space for a baby and would probably be ok … that night Simon showed me how to change a nappy with our newly bought tiny baby nappies and a teddy bear. I felt a little calmer. If she came early, we were ready. Kind of.

Our final scan was a Monday. It was time. Scarlett would be safer out now as the cord was not working well enough. Time to choose; a caesarean section later that day or be induced. The choice was mine. With hindsight, knowing what I know now, I should have opted for the C Section. But I still had that romantic idealistic notion that all first time Mothers have of how I wanted my birth to be. I had been practicing my breathing and had my hypno-birthing CD in my bag. My birthing ball was in the car and I had spent several hour working on my birth plan. My birth would be natural, with my choice of music playing in the background. Simon would help with the delivery and Scarlett would be immediately placed on my chest for skin to skin contact and feeding. It would be beautiful and my hair and makeup would be in place for the photos afterwards….

Four days, three rounds of induction and very brutal procedure from a robust midwife later and I was walking into theatre with Simon for a C Section. It wasn’t the birth that I had planned but it was beautiful. Simon was with me, holding my hand, reassuring me and making me laugh. The Doctor who had carried out all our scans and knew the journey we had been on the last few months delivered Scarlett. It was calm, relaxed and we have some wonderful photos and memories of those first precious minutes with Scarlett.

I will always be grateful for how the team in the room behaved. While they must have all known immediately that Scarlett had Down syndrome, not a word was said and the mood was happy and excited. I have heard terrible stories of Mothers being given the diagnosis while still on the delivery table or the atmosphere being subdued or sad. But our team celebrated the birth of our beautiful daughter with us, they congratulated us, took pictures and allowed us to enjoy the moment.

The events of the rest of the day are hazy in my mind but there are two things I remember very clearly. First that when Scarlett was born it did not enter my head that she may have Down syndrome or any condition or disability for that matter. Which is strange given the pregnancy that I had just had, the scans, the worry, the daily discussions Simon and I had about how we felt about our baby potentially being born with a disability. The moment I saw her I just forgot it all. She was here and she was perfect. My only instinct was to feed her and keep her close. I also remember being given the diagnosis later that day. The Doctor who talked to us was wonderful and did her very best to follow the “tell it right” protocol. She first asked who we thought Scarlett looked like. And without hesitation I said “oh she looks exactly like her Dad when he was a baby! Simon’s a quarter Chinese and I can see this in Scarlett – she has beautiful almond eyes and a broad bridge to her nose”. I was absolutely right, of course, Scarlett is very like her Daddy especially around the eyes and nose. But to the Doctor, I suppose, I was describing Scarlett’s Down syndrome features and just not realising it. The Doctor gently guided us toward understanding that she thought Scarlett may have Down syndrome, she explained about the single crease across Scarlett’s palm and smaller low set ears. I asked her if she was ever wrong and she answered that she would be very surprised if she was but that they would confirm with a blood test. She then left us to be alone for a while.

We had a little cry for a minute or so, we hugged and then we looked at our daughter and knew very quickly that while this was a lot to take in and there would certainly be some challenges ahead and, yes, we were pretty scared, we could handle this. We loved her. We loved each other. Scarlett was perfect and whatever the future may hold, our immediate priority was to feed her, keep her warm and love her. And that’s what we did.

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