And so it began, the journey ahead … all starting from the line on that little white stick. Did I dare to be excited? Riley was our rainbow baby; at one, he was our third child and I’d already learnt not to take this pregnancy lark for granted … we had lost his sibling at 14 weeks gestation. The horror of seeing that little image on the screen with no heart beat will never ever leave my own beating heart. That loss took away the joys and naivety of pregnancy … but here he was my beautiful healthy one-year-old. Now back to that line …
Those three months were like torture, waiting for the loss. I felt sick … my tummy was growing and then there on the scan was our little bean … heartbeat beating away. The anxiety lifted like a bright cloud on a rainy day. Everything was going to be fine … but then came the phone call.
I was in McDonald’s about to order happy meals for my three little pickles … (life was busy but fun. My eldest Luc at five years old was like a little old man – diagnosed with congenital Myotonia he moved like one too, but was a happy soul. Reece was not far behind at four years old. He was the joker of the family) And the phone rang … The phone call that changed everything with just 10 words … hardly a full sentence … it changed just like that in McDonald’s … I stood there with my heart racing … my head spinning … now what? I worried about what Dwayne was going to say. I begged for baby number four … he wasn’t sure, but then agreed a big family would be great. Was this all my fault?
Those words in McDonald’s …
‘You have a high chance of Down’s syndrome. One in 62’, I was told.
Yes, in McDonald’s it all changed.
I sat numb as the words whizzed through my head … over and over like a washing machine … the children’s laughs and giggles were like muffles in the wash … Down’s syndrome … now that’s a scary word … ‘we would like to offer testing’ seemed even more scary … risk of loss … but I was showing I was clearly pregnant with our baby number four … round and round the words swirled … faster and faster as the setting on the wash changed to drain and spin …
Dwayne … what was I going to tell Dwayne?
Now let me tell you as weird and as odd as it sounds little did I know that ‘Down’s syndrome’ was going to be the thing I prayed for most.
Little did I know a diagnosis meant everything in the world.
Little did I know I would pray … ‘please be Down’s please be Down’s’
All will be become clear soon. How could this mad mummy want her baby to have Down’s Syndrome?
Testing was off the cards. This baby was ours … then the bleeding started at 17 weeks gestation. The horror … our world just got that little bit scarier.
Extra scans, hospital admissions, bleeding, extra scans, hospital admissions was now our new routine.
Large head, swollen tummy, ergonomic bowel – Down’s syndrome markers became the norm to hear at the scans and then before we knew it the labour pains started.
Our journey was about to start … our baby with no name and no confirmation of whether it would be health, was about to enter the world.
Little did I know I would beg for the Down’s syndrome diagnosis … the weird mummy begging for her baby to be sick … how could a mummy think like that?
Let me explain. Labour was quick but wasn’t easy. I had Myotonia myself so the contractions were hell – my body not having time to breathe in between the contractions, the muscles not releasing their fine grasp on my body. I was scared. I begged for pain relief but was told my labour hadn’t progressed enough. The feeling of dread overwhelmed me as I nearly passed out. I then came round to the words ‘breathe Serena, take a breath.’ I came back to this scary room, I took a deep breath and pushed out my little miracle. Was he breathing now? Why was he quiet? Is he ok? Oh my god why is he so red? What’s wrong with his eyes? My little miracle with no name screamed, but none of my questions were answered. Could no one hear me? Why is my baby covered in a burning rash?
A blood test to confirm Down’s was done … He clearly has Down’s, he looks so odd … two days for results, are you serious?
Oh an infection? Strep b? Intravenous antibiotics … monitored in hospital … and the results … all clear? Wait what? All clear you say? Are you sure? But my baby looks odd …the baby with no name doesn’t look like my baby … he doesn’t look like me and he certainly doesn’t resemble Dwayne. (later this will become a family joke) and he is most definitely different to his siblings. He isn’t well, he doesn’t look right, how can he not have Down’s, I thought? Is my baby with no name going to die because they can’t treat him if they don’t know what it is? Oh please, please tell me has Down’s. I don’t want him to die. You see Down’s syndrome was no longer scary … the unknown was scary.
And so the new phase of our journey began; I became the neurotic mother watching every move, listening to every sound and asking, ‘is that normal? Should he be doing that?’
Honestly, I became a joke … a mother of four? Are you sure? More like first time mum not having a clue what was ‘normal’ any more …
A name … our baby with no name needed a name … something apt of course.
Baby with no name became Cayden … a name chosen with care by his doting daddy. It means ‘fighter’ and fight is exactly what this little wrinkled, red thing did, from conception to birth and beyond.
‘Do you realise your baby doesn’t blink?’ I was asked.
‘The medicines for his severe reflux are making his spasms worse,’ I said.
‘Cayden has muscle weakness on one side.’
‘Let’s wait and see’ said the doctor.
If a doctor tells me to ‘wait and see’ one more time, I swear wait and see won’t be in their vocabulary anymore.
I don’t want to wait and see, I thought. I don’t want to sit and watch. I don’t want to Google every single symptom and come up with a ridiculous ailment I’m so sure he has. I don’t want to be scared. I don’t want to be this neurotic mummy, I want to be Cayden’s mummy. I want Cayden.
Blood tests from his head didn’t even seem a big deal anymore. I’d read parents post on Facebook about how upset they were because their little darlings have had their immunisations. I was screaming inside: ‘A jab, you’re child has had a simple jab, my child has just had blood taken from the top of his head. He can’t breathe when he cries.’ My world had just become different; normal parental woes weren’t part of my world now.
Our world revolved around days at hospital, the ‘wait and sees’, the tests and the all clears, but my baby was still very sick and no one knew why.
His list of conditions included Myotonia, Hypermobilty, spasms, reflux, Hemihypertrophy, Spina bifida, protruding eyes and unusual features, bow legs, no speech and reduced fine motor control. Our lives became a world of physio and portage and special needs groups.
I also discovered a world of caring therapists and beautiful mummies and daddies – mummies who could look at you and without a word could read your mind and understand exactly at that moment how you felt, how your day had already been (yes at 9am it had been ‘that day’ )
It was a world I would never have discovered had it not been for our beautiful fighter, and actually I kind of liked it. I had more friends that I could have ever imagined.The support and understanding only another special needs parent can give was truly precious, and then there was the inspirational children; oh my all these beautiful children!
And there was SWAN UK.
How did I find SWAN UK? I have no idea if I’m truly honest. My life was a blur. Cayden’s first year had passed and I felt like I didn’t know him. I had missed out on my baby as I was continuously looking for what was ‘wrong’. Google had become my life.
But SWAN UK changed all that for me. I realised I needed to see beyond the symptoms, beyond the medical tests; I needed to see Cayden.
I felt guilty about the way I felt but I was so desperate to keep him ‘alive’ it was all I could think about.
I needed answers and SWAN UK saved us.
I ‘saw’ Cayden for the first time – how his beautiful big wide eyes lit up every time I walked in the room and how everyone adored him. There was something about Cayden that charmed everyone he met.
And then he walked …
We began to focus on the positives and Cayden began to thrive – more slowly and not in the same way as his peers but thrive he did. Oh how I wished I hadn’t worried in those early days, how I wish I had just ‘waited and seen and watched and waited’.
And as Cayden thrived, something happened, something happened we never expected and our world was about to change again.
I had only just got to grips with Cayden’s health and little did we know the brown stuff was about to hit the fan.
You see not all conditions appear at birth, some don’t appear until a few years later. I felt this was worse – watching my healthy nearly three-year-old become ill. The ‘wait and see and watch and wait’ began all over again .. but this time it wasn’t Cayden.
As Riley’s health deteriorated I had learnt one thing – sometimes ‘wait and see’ really is the best thing to do and so with the support of SWAN UK and those precious special needs mummies our journey has been eventful and also quite fun.
Cayden is due to start school (oh my) and Riley is about to start his genetic testing. Both are still undiagnosed but with baby number five on the way (boy number five eek can you believe it) I feel rich, very rich and I wouldn’t change a thing. I love our different world. I love my different boys and actually I also now love me.
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