Today is Not the Day...why I'm not ready to tell my daughters.

I'm starting this post with a little dose of trepidation...I'm usually not one to worry about people's opinions but this subject makes me feel somewhat uneasy and I'll explain why. One of the questions I frequently struggle with is when and how I will discuss my daughter's diagnosis with her and her sibling. Yes, two years in and I still haven't talked about it with my eldest. She understands that her little sister was unwell during her first year but since then she has thrived in lots of ways, so it has never felt necessary. When we discovered that our daughter had a genetic deletion, I remember thinking how much better life would have been if we didn't know. How we would have allowed her to develop at her pace, without the constant scrutiny, notes and discussions. Whenever I start to go down this route, I remind myself how immensely beneficial the diagnosis has actually been to her and us...it's given us a head start - we've been able to work on targets, focus our minds on what we need and have to do to open up all those neural-pathways. This intervention has worked and I'm grateful for it...but it doesn't stop me from querying the what ifs and if onlys. 

Without doubt, the knowledge has had two major effects - positive in the sense that I'm aware of how to support her and negative in the sense that it's easy to 'blame' the condition. I have a tendency to fixate on the characteristic traits e.g. being over friendly or a 'cocktail personality', as it's so eloquently described. Over recent months I have obsessed about this and worried intensely about its potential. I've allowed myself look too far ahead, that hazy future none of us have control over but we desperately want to organise and manage. It's taken me to a whole host of scenarios that leave me in a cold sweat. A few of my lovely friends of late have recognised that I'm worrying and have reassured me...they've reminded me that plenty of 2 year olds wave and say hi to people...that my incessant stopping of this is almost squashing her vivacious personality, something she inherits from my husband's side of the family, not necessarily just from her deletion. She certainly doesn't say hello to everyone and can become very shy if someone talks to her - all totally appropriate for her age; but I've allowed her label dominate my reaction to this. Obviously, my intention is to keep her safe and to teach her about boundaries; but my knowledge has affected how I've responded to her behaviour. 

My fear is that by telling Bean, by telling Beebs (her sister), they might respond in the same way that I have. I might limit their expectations of what my gorgeous girl is capable of. Will they read this long list of traits and allow it colour every decision they make? Will it propel them to live in fear? Will it make my daughter see herself as a label, rather than an individual? Of course, these are all unanswerable but they can become tormenting if I allow.  

The truth is, at some point we will have to have that conversation. We will have to tell her about her condition, as there can be health risks attached to it and consequences if she goes on to marry or want a family. I suppose what I'm trying to say is, I want her to have a life unburdened by a diagnosis. I want her to live without the worry that 'different' can bring...but that's just not possible. I don't want her sister to be sad, to suffer guilt (something I know many siblings can feel), to feel responsible for anyone but herself. These, though, are the cards that we have been dealt and we have to face them as a family - us against the world. I would love to keep it a secret to allow her to just live life like everyone else but I suspect that this is unrealistic and would be unfair to both my girls. In fact, they might not react like me - they might embrace this knowledge and champion it, something I want to do too. I'm sure, they would probably teach me the right way to digest the emotions and concerns.

Diagnosis doesn't stop when the doctor utters the words to a parent...it can be a torrid journey that shows no mercy to its traveller. Every step forces us to make a new decision, to manage a situation/emotion, to find the best way to cope. We won't always get it right, in fact we often get it wrong. Ultimately, my main reason for not telling either of my girls yet is that I want them to live a life beyond limitations. I want them to uncover their strengths and weaknesses first, rather than be presented with a list of who you are or, rather, who you might become. Life's joy is discovery, freedom and evolving into an individual...both of my daughter's deserve that. So, for now, I'm going to allow them the peace and quiet to do just that...when we need to we can talk, explain and work through it all together... but I don't believe that day is today. For the time being, I want them just to enjoy the here and now...something I'm learning to do too. 

Bibi xx

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Waiting for the call...

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. 

Bibi xx

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Welcome

Hi...

Last year I completed a challenge called '100 Happy Days'. It was, quite honestly, life changing for me. I needed something to cling to and I found this experience acted like a life raft for me during (& after) some exceptionally difficult times. By writing about one good thing a day, I recognised that despite all the traumas I had endured, my life was still a rich blanket of wonderful things. It almost re-wired my brain and my mindset. It made me focus on the positive, rather than dwell on the negatives. Don't get me wrong...I still love a good moan and complain about insignificant things but I try not to allow it fester for too long. 

As a result of this I decided to start two things. One - a group for myself and parents whose children have additional needs/disabilities, which I did at the end of 2015; and Two - create this blog. I'm not sure exactly what direction this blog will take...my intention is just to write about the things that I see, experience & feel. 

So let me introduce myself...I'm an ex teacher, who is now a full time mum to two gorgeous girls. Being a SAHM was never really my intention but my second daughter put paid to any thought of a return. Since her arrival my life has changed paths...I've had to adapt to a new life, one that absolutely terrified me initially but now I fully embrace & actually feel grateful for it. I'm passionate about supporting children and families with additional needs/disabilities, I actively try to support parents who are going through diagnosis and try to use my knowledge of eduction to help in any way I can. I love books, fashion (even though mine has become seriously lazy), family, friends, music, prosecco, Italy, France, laughing & lots of coffee...in truth I love life, with all its pitfalls and worries. I hope anyone who takes the time to read this will enjoy it. So, welcome to Chromosomes and Coffee...xxx 

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