Happy Monday All...Random acts of kindness!

One of the most wonderful things you can do for anyone is be kind. As the saying goes, it costs nothing...it has real power to makes us feel loved & cared for. Today when I arrived home from the school run I found a little posy of tulips on my doorstep. I instantly knew they were from my next door neighbour, as we regularly play flower-tag! We've both had a very tough few years but we've still had to plod on as mums and as women. Whenever there has been a problem we've known that we are only a knock away...this gives me such a sense of wellbeing, it's untrue. I'm a big believer that the simplest thing can make someone happy and feel protected.

I've been lucky to always have a really gorgeous circle of friends - they all bring something unique into my life and I hope I do to theirs. I simply couldn't function without my friends...I never understand women who say 'I don't get on with girls' - I find that totally unfathomable. The women in my life are so wonderful - each and every lady I know is special to me. I love the conversations we have, the laughs, the tears, the nights out, the long lunches (when we actually get the time!!), our moans about family stresses, the times we lean on one another...every ounce of them enriches my life. If you don't 'get on with women' then I urge you to have another go. A female friendship is a wonderful thing. 

Happy Monday!

Bibi xx

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Be Brave

In February last year my youngest and I were invited to join a Child Development Group…it was sold to me as a ‘Family Support Group’ and, if I'm honest, the prospect made me feel uneasy. I couldn't visualise what this group would look like - would we be expected to bare our souls? to share the finer details of our children’s woes? I attended nervously…I almost backed out at the last minute but decided to brave it and welcome the opportunity.

What I didn't realise when I opened the door is how much it would transform my life, let alone the progress my girl would make. I walked into a preschool setting but one that was totally unique. Instead of the hustle and bustle, noise and chaos of most groups, this was an educational play session that catered for a select group of children and families. We were all, despite our varying diagnosis, in the same boat. There were no judgements, no insensitive questions, no boasting about possessing a genius child…rather, it was etched on the face of every parent that we were here to support our children, to give them a safer and more secure environment to work within. What a relief! 

Each Mum was at different stages of the diagnosis process: some were seasoned pros, a few were in the initial stages of assessment and one or two were consumed with a sadness that was palpable. As each week passed we got to know one another more intimately. We shared our stories, gave advice where we could, we laughed, complained...but, above all, we supported one another. I have learnt so much from each and every one of these women…I've realised that, more often than not, Mums are at the coalface of these groups. My husband works. A lot. I'm fortunate that he does but the end result is that I attend all these sessions or appointments alone, just like most of the women in this group. You have to staple on your brave face, breathe in the fear you feel when you attend a meeting, swallow the emotion as it wells up each time you have to express information about your child’s condition, strengths or weaknesses. It's all consuming and takes courage - sheer grit and determination. Every woman I have met at this group is endowed with an inner strength that they probably didn't know existed, until they were faced with these challenges. 

I'm a big believer that the right support is essential - it cannot simply come from your family and close friends. Whether it is portage, local services provided by your council/borough, charities…wherever it is, you have to tap into it. The group that we attend has given our children the skills, resources, time and care to find successes. They have given us the tools to support, engage and manage our children. Most of all though, it has allowed us to create a network of women who can lift one another up, strive for each other and cheer each other on. We can sob openly if we are having a bad day and we can laugh heartily when the better days are upon us. 

Many of us have overcome the grief now, whereas others are in the midst of it…some days you can almost see the ‘black dog’ walking beside them, nuzzling their legs and demanding their attention. This has made for painful viewing - anyone who can empathise with this experience knows that this sorrow, although ever present, minimises and the gloomy fog clears so you can begin to see the horizon again. When I see some of my now dear friends so consumed by this sadness, I want to do anything I can to reassure them that the diagnosis is a start pointing, not a shackle. It ‘should’ open doors and it ‘should’ promote the start of a new journey (I use should because I know we have been lucky - not everyone is). It won't always be a smooth track but your eyes have been opened to what you need to do and hopefully, with guidance, who can help. 

The advice I would give to any newly diagnosed parent is be brave - channel that heartache into proactivity. Push every ounce of your sadness and anger into seeking out support. When I opened the door to the Child Development Centre I anticipated all the negatives, I was so wrong. What a mistake if would've been if I had allowed fear take over and stayed home. Being brave leads you to face things head on - we fight for our children to make their life better, we fight to keep ourselves afloat, we fight because we have no other option. I made a decision when my daughter was diagnosed that I could either lay down and die or I could champion her. She is my life’s work now, just like so many of the Mums I have met. 

The group that we have formed now transcends our CDC - we are now a team, a united force working together to support our children, to sustain one another. Starting a simple Facebook group for these ladies is one of the proudest and best things I have ever done. I was nervous suggesting it but I am so grateful I took the plunge and did it. No-one should walk this journey alone. It troubles me to think how many parents might be at home or at work each day feeling abandoned, isolated and trapped. I would urge anyone in this position to reach out. Send a friend a message, explain how you feel. Search your local authority's website for local services. Contact Mencap, Scope, the charity that supports your child's diagnosis. Do whatever it takes to challenge the status quo. There is no shame in feeling sad, there's no shame in asking for help. You can't control the diagnosis but you can absolutely control how you personally deal with it. Above all, be brave and believe that you can do this, because you can. 

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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