In 2013 I gave birth to my second daughter. It was simply the most spectacular day of my life - I pushed my heart out and was rewarded with a beautiful little girl. She sat on my chest, opened her eyes and I was besotted.
Immediately though, something didn't feel right. She was well over 1.5lbs lighter than my first and seemed tiny in all proportions. The midwives examined her and apart from a tongue tie she was deemed 'normal'. No heart murmur, no distinctive features, all in all she was classed fit and I was sent on my way within hours of delivering her.
And so the battle began...nothing ever clicked for my little lady. Feeding was a disaster, endless hours of screaming, having to be constantly upright and none existent weight gain. She was prescribed milk and slowly things started to improve. Hooray I thought, I've cracked it...oh how wrong I was.
By Christmas she was napping like a pro, hitting milestones and I felt I was getting into my stride. Within a few months, everything was to go sour. By Easter, she was severely ill with every feed, cascading down the percentiles and all health professionals seemed oblivious to the downward spiral I and my precious girl were on. I was practically door-stopping the GP and insisted she be seen by a paediatrician. Finally, we were seen. Bloods were taken and the start of our genetic journey was to begin.
Following my first appointment with a simply gorgeous Dr, we were sent on our way with hypoallergenic formula (I'll be honest, I knew this was nonsense and wouldn't make the slightest difference). Within a week, she was even worse and could barely keep a drop of water down, let alone milk. My husband was working abroad and I was starting to crumble. She was now becoming desperately unwell and was struggling to wake from her naps. My limit had been reached - A&E was our next stop.
Finally a Dr started LISTENING...she heard my concerns and started saying the things I had been thinking 'why isn't she growing? Why has she suddenly started missing milestones?'. The second set of blood tests, along side the first set taken, showed that she had raised calcium in her blood... hypercalcaemia. She was admitted to hospital and suddenly all hope started to disappear. It wasn't simply reflux, we were now facing cancer, a genetic syndrome or the unknown.
Moments like this leave you feeling in such pain that you can't possibly find the words to do it justice. As Beckett wrote 'words can only say but never mean'...I could pluck a million adjectives from the ether but I would never be able to capture the fear, hurt and devastation that my husband and I felt that evening as we held our lovely, defenceless girl in our arms. The image of my sobbing husband holding her will remain with me until I depart this life.
We would have to wait a further 8 wks for final confirmation. That day would come on a beautiful sunny day in August 2014. The specialist called...I knew as soon as he said my name that the news was bad. I knew he would say that my sweet girl had genes deleted, that her whole life would be changed forever because for some reason her little body worked against her when she was forming in my womb.
On that day it felt as if everything stopped. All happiness and hope for the future had been sucked from the world. No more could we hope for weddings, grandchildren, school party invites...normality...the future was hazy. In reality, nothing had actually changed, just our perception. None of us know what's in the future - where or how our children will end up, but we paint a picture in our mind. We convince ourselves that our version is the one that's real, when in truth there are no certainties. Her specialist made this abundantly clear to me as I listened to his voice over the phone..."the only difference for your family is you have a diagnosis, something that means you can preempt and prepare for the future". At the time this seemed blasé but now I hold on to this. I believe in his words.
Over the last few months and years I have spent every day playing with my daughter - watching her develop and seeing her come on. On many occasions I have felt overwhelming sadness when I've looked into her eyes, I see the battles ahead, of which she is oblivious. I have to work very hard to repress those feelings and to focus on the positives. I have also spent vast amounts of time (every day in fact) waiting for the call...you know, the one where they tell me they've made a terrible mistake and it's not true. I'm sure this is part of the grieving process and is 'normal' but it's like a cruel trick. Deep down you know that phone call isn't coming but yet somehow you tell yourself it will happen and you imagine how you'll feel once you know this episode is over...how you'll phone your husband, your mum, to rejoice or tell your friends that you're back in their club, the one without complications. It's a callous stage and one that slowly chips away at your resolve. You're no longer part of that group who look forward to the future - it's just too hard to contemplate. I catch myself feeling such anger towards total strangers who appear to just be free to live, without the concerns and pain that we feel. My patience for the day to day moans and gripes of others makes me want to scream. Of course, the truth is, we are all fighting and facing our own demons, but when you have a child who has a diagnosis or difficulties you can't help but feel in a very solitary and lonely little world.
But as each day passes, and no call comes, then you start to realise that it is true. That your perfect imperfect baby has a condition and it's never going away. That the love I felt as she lay on my chest after I pushed her from my body is still present and grows stronger every single day. Having a baby is a lifelong commitment, with or without a genetic diagnosis. Yes, we expect our children to move out and pursue their own lives, but my expectations for my daughter will not alter despite my new found knowledge. I will still strive for her to achieve independence, love, joy, relationships, friendships, fun, employment and a future filled with happiness. I refuse to embrace this diagnosis with a heavy heart and lower my expectations. She will achieve because she has an army of people surrounding her that will expect and enable her to do so.
So my parting thought is this...stop waiting for the call. The likelihood is, it isn't coming and by spending your days waiting for it you will be distracted from the beautiful human being that's in front of you. Nothing in life is certain, nothing is perfect and even in your darkest moments there will be another soul somewhere feeling desperate and hopeless in a situation more grave than your own. It is a diagnosis - a tiny part of your child, not them it their entirety, it's not a life sentence. Your little person would not be who they are without it. So, stop waiting for your phone to ring, breathe in & out and start living life again.
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