Hope Is A Waking Dream

Yesterday evening I had one of those awful moments where something happy led to a wave of sorrow. We'd had a great day - fab news from Bean's observations from her keyworker at preschool; things like that always lift my spirits and make me feel confident in the approach we're taking. We'd come home, played some games, sang a few songs and laughed a lot. As I held her in my arms and looked into her smiling eyes, I felt a tsunami of emotions hit me. 

In an instant I'd leapt forward 10 years imagining having to discuss the difficulties she might face...the major one being sustaining relationships or having a family. I pictured this beautiful person suddenly having a whole wealth of problems and anxieties firmly being sewn to her shoulders...and my heart broke. Knowing that it would be me, my voice, sharing that news with her and being aware that I'd be watching her innocence evaporate as each word would be uttered.

You see, the every day doesn't frighten me. We live and breathe genetics and the impact it has on our lives - for the most part we've been incredibly lucky and she has been quite the enigma, rarely possessing the vast traits of WS. But the future? That has the power to send me into a quivering wreck. I get moments where I wish I could place her in a little bubble and prevent her from facing any of the potential hurt and sadness that's round the corner. I would happily share my home with her for the rest of our lives but I know that wouldn't be enough for her. She has a zest and power for life, for new experiences. It's those awful glimpses into the future when I abandon my normal positivity and begin only seeing negatives. 

It's in moments like this that you have to take a breath...catch yourself and say that the only thing that counts is right now, this minute, this second. Guarantees and certainties simply don't exist for any family but perhaps those of us with children with SEND know this or feel this more than most. Today is the focus and tomorrow should be viewed with hope. As Aristotle said 'Hope is a waking dream'. Hope is the vessel that will guide us to tomorrow and great things can & will be achieved. As long as hope fires our core, the conversations of the future, the moments of sadness can be vanquished by the joy, love and dream of all that she is and will be capable of. 

Bibi xx

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Chromosomes, Coffee and CANADA ❤️🇨🇦

This summer we were fortunate enough to visit family in Canada. We hopped a plane to Toronto from London...I'm not going to lie, the prospect of a 7 hour flight with a 6 & 2 year old was not exactly thrilling but they were angels. Seriously - total angels! We had lots of food, a couple of glasses of wine (not the kids obviously), some strong coffee, a ton of Disney and suddenly we were touching down in this vibrant city. As soon as we disembarked I had a wish that I'd visited before children - we would've had so much fun!! 

A yummy dinner, a good sleep & before you knew it we were greeted with a new day. We took a quick wander round the city...a little spy of the CN Tower, the Rogers Centre (Go Jays!), Ripley's Aquarium, the cool orange signs, the immaculately clean streets...I could go on. As we stepped I looked at my girls and thought how lucky we were to be sharing this moment together. Such a cool trip & it had barely begun. 

Later that day we jumped in our hire car and headed towards Lake Huron. 3 hours zoomed past and finally we arrived at a little piece of heaven. Have you ever found somewhere and immediately felt at home? As if all those times of questioning where you fit in, why you've always felt the odd one out, suddenly seemed to dissipate. It was incredibly freeing, in fact it made me quite emotional. Now, before anyone says it, I'll do it for you...we were witnessing Canada (Lake Huron to be exact) in all its blissful summer glory. I know that come winter this place transforms into a sub zero winter wonderland...but perhaps with less of the wonder if you've endured Canadian winters for a lifetime! But, despite those nagging thoughts in the back of my mind, I loved it. I adored how polite people were, the extraordinary level of kindness extended to us, how welcome we felt (despite our British accents - trust me, that isn't always the case when you travel) and the relaxed nature we continually encountered. 

During our stay we went to a Celtic Music Festival...one of the beautiful things about Canada is the diverse community. So many families travelled far & wide to North America, to settle, to make it their home. It's what my family did - Irish born but London based, my relatives left for a better life and they found it. For 40 years they have carved out careers, relationships, homes...a new way of living that they have fully & unquestionably embraced, but their Irish roots remain apart of who they are. I saw that history of birth running through the veins of the towns I visited. The Celtic traditions: the music, song, poetry, was evident to see and hear. It was, without sounding crass, magical. All these many nationalities embedded together under one flag, it made me feel proud to be there...& made me feel a million miles away from all the negativity, hate filled problems Brexit has caused in the place I call home. It made me want to stay there forever. 

My aunt described it as a 'kinder community'...as a parent of a child who faces the potential of a lifetime of challenges and obstacles, this was deeply appealing. I'm sure if there are any Canadians reading this they will think I'm being too idealistic or viewing their country with rose tinted glasses, and maybe I am but something about it clicked. It felt right. And surely that's what it's all about, finding somewhere that you feel passionately about. 

So what now? Do we take the plunge and try a new life? I'm certainly nervous at the prospect, the million and one things I would need to do to make it happen but if there is even the slightest hint that we could give my girls, Bean especially, a kinder and more understanding future then I want to grab hold of that & not let go. It's hard for others to understand that...unless you have a loved one who has an uncertain future then all this might seem silly but I know that we have to do everything & anything in our power to improve and enhance our lives but more importantly the future for our girls. 

So...although nothing is certain yet, I hope we have the opportunity to try something new & give us all reasons to be positive for the future.

Bibi xx

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WE will keep your head above water...

I came across this quote today and it instantly rang a chord. I've mentioned before that I'm part of a fab little group for parents of children with additional needs/disabilities. We have become a tight knit group of warriors in this dog eat dog world of SEND. For all of us this is a new experience and one that is taking us varying times to come to terms with. They are my comrades on this journey and I thank my lucky stars to call them friends. 

One of our members though is struggling...in fact that word doesn't do it justice. She's sad, hurting and unable at this point to remedy it. We all feel the depth of her anguish and, in truth, we are all in pain for her. She has just received a diagnosis and instead of it opening doors, as she had hoped, they seem to be slamming in her face at every turn. Support doesn't seem readily available & now she is left in fear. I'm not using that word to be melodramatic - imagine not knowing how best to support your child, being bombarded by daily anxieties about what the future holds, knowing that your life has changed irrevocably and there is nothing you can do to change course. 

Witnessing this has been like turning the clock back two years ago...I feel like I'm watching myself, desperately trying to tread water while gasping for breath. Although I can't know how she is feeling, I empathise. I recognise that sudden loss of control, the loss of carefree, the loss of who you used to be. You are reborn into a new way of thinking and existing. You're expected to learn quickly - every abbreviation, term, strategy sounds like a foreign language and you can often feel overwhelmed or on the back foot. The pain that she is in right now is palpable - it is almost radiating out of her every pore. We all remember those first brutal months after diagnosis & although we can encourage, reassure and advise that things will improve...we can't promise anything. 

As I read that quote today, from a poet I adore for her painful yet beautiful lines, it made me realise that all these wonderful ladies that I've met consistently put an arm round one another - physically or virtually. We can help our friend try to keep her head above water by listening, caring & giving her our time. One day, she will be doing the same for others & these darker days will be locked away in her memories. I'm sure that she cannot imagine that brighter days are ahead for her but they are...the challenges, the despondent moments will still happen but her resolve will be greater. 

Offering kindness to another is one of the most beautiful things you can do. Having a group of ladies who deliver it so unconditionally, when their own lives are complex, is a truly humbling thing. Knowing these women has altered the path my life has taken &, although we have all lost a part of who we used to be, we can carry one another through our sadder moments & cheer each other on through our better days. Right now we all want to keep our lovely friend afloat and offer her hope that all is not lost...she may not recognise who she is today but as the tide ebbs & flows, she will discover that she can not only keep her head above water but she can do so with a smile on her face. 

Bibi xx

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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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Undiagnosed Children’s Day - 29 April 2016

Today is the 4th #undiagnosedchildrensday. Often the word SWAN (Syndromes Without A Name) is used - it is essentially an umbrella term for a child or young adult who is believed to have a genetic condition or rather an undiagnosed genetic condition. This can impact on a child and their family in enormous ways. There is no designated medical path to follow - no exact treatment plan. Sometimes it can involve guess work and fighting fires, instead of a preemptive strategy. 

For anyone who has read a few of my posts, you will know by now that diagnosis came relatively quickly for my daughter. She had a very precise symptom, which lead her consultant to carry out a FISH test (I’ve attached a link as I wouldn't dare to attempt to give an exact translation of this!). They were able to administer this test to look at a specific chromosome - number 7. Within 8 weeks we had a diagnosis and a plan. I have frequently said that it is easy to become blasé about having a label, a name for why your child is developing in a particular manner. As time has passed I have started to fully appreciate what it means to ‘know’, to be able to map out and consider the future. To know the organs of the body that need to be monitored or observed. The methods that might unlock or support your child to achieve. 

When my lovely girl was diagnosed we had genetic counselling (one of the most fascinating meetings of my life). This incredible man enlightened us on what we had in store, what we would need to be aware of but more than that he offered us hope and support for the journey we were beginning. At the end of this session he handed me a booklet, which contained around 50 pages. This outlined every stage of my daughter’s life and what medical checks would need to be done. I can remember casually putting this in my bag and walking out. I had no real appreciation at that point how valuable & fortunate we were to be carrying this paperwork. I feel completely ashamed writing that today but I do it to make people realise how grateful they should feel to have a diagnosis, even when it hurts to your core. 

I know a number of children & young adults who have yet to find a diagnosis. I have witnessed first hand the struggles, worries and apprehension this can cause. The not knowing must be deeply painful but yet they continue to put one foot in front of the other - determined to give their all to their child. Studies like the 100,000 Genomes Project are working towards finding diagnosis and treatments plans for those who need them. I have met one of the Drs involved in this and he is simply the most dynamic man I have ever met - he is passionate about discovery and changing the lives of families. The support he offered my family post diagnosis will never be forgotten. 

So, this is my plea to you. Please support #undiagnosedchildrensday - retweet, Facebook, tell your loved ones, tell everyone about the importance of it. For the friends I know who live this every day, life without diagnosis is complicated and unforgiving at times, but their child is just as loved, valued and significant as your own. 

Bibi xx

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You can make a difference - if you would like to support SWAN then please find the details below:

“If you would like to make a one off donation you can also do this via Just Giving or Virgin Money Giving or text SWAN11 plus the amount (up to £10) to 70070.” from https://undiagnosed.org.uk/get-involved/

I am Alison...The A Word (from my perspective)

So, full disclosure...my child doesn't have an autism diagnosis. She has a genetic deletion, which presents a range of distinct traits with strengths & weaknesses. Hence why I've added the ‘my perspective’ to the title of this post. I cannot and do not claim to understand the experience of raising a child with autism. Despite this, ‘The A Word’ resonated with my own life. Alison often felt like gazing at my own reflection. Seeing her attempting to silence the use of the 'label', being overly assertive (pushy!) with professionals, fearing the stigma, grasping onto breakthrough moments only to be crushed by reality once again, scrambling for support to 'unlock' your child to enable them to access life, like everyone else. When I say these words I am not speaking on behalf of anyone else - I'm not suggesting that everyone feels this way, but I'll admit that I did, or, maybe more accurately, that I do.

Many of the episodes rang true for me - I kept catching glimpses of myself on screen and this made me shudder. I recognised Alison's plight - yearning both intervention but the need for privacy. The final episode felt like a culmination of these emotions. Witnessing Alison being dragged to honesty was acutely painful to watch...particularly as I feel I'm edging ever closer to that epiphany or fate. Alison was pressed to describe her son - to expand on his personality (essentially to reveal his autism)...this brought me to tears. Observing Alison stumbling over synonyms & euphemisms spoke volumes to me. Right there I was watching myself...nearly two years post diagnosis and yet saying the words, the label...hurts. Each solitary letter causes me pain, physical pain. Diagnosis, labels, your child being different ("but not less") is an enormous thing to digest. It's a strange paradox that I find myself in - I envy people's openness. Those who fight, campaign and champion their child's condition. I want to be those people but I’m not, yet. 

The truth is I have told my parents, my sister and a tiny number of very close trusted friends. When people have questioned why my daughter was in hospital, if she is 'better now', I'm ashamed to say that I've twisted the truth. I dress this up as my way of protecting her - I frequently hear myself saying "it's her diagnosis", that I want to maintain her privacy and dignity. Part of me believes this, the other part thinks I'm just not ready to face the enormity of my daughter's future and her sister's too. Acceptance is a marathon, not a sprint. It is a path laden with broken glass, each step can cut and scar. Eventually the road clears and you begin to find beauty in it, but that doesn't necessarily mean you have crossed the finish line. The irony is, I embrace my daughter’s diagnosis - I have no desire to take it away, she is who she is because of those words I struggle to utter. I do though have days where I wish I had a magic wand to ensure she has a happy and fulfilling life.

Alison wasn't always likeable - she could be defensive, defiant & often desperate…desperately in pain, desperate to awaken the child she thought she had and desperate for a professional to empower her and her son. She, at times, neglected to notice her eldest child. The truth is that this can and does happen - it makes you feel terribly guilty but when you have enormous complications, you don't always get it right.

'The A Word' was, just like my own situation, perfectly imperfect and that for me was its beauty. It touched upon painful and poignant issues, revealing the pathos felt by parents coming to terms with a diagnosis - from denial to the first steps in acceptance. The word ‘grief’ was used…”It feels like grief to me” said Dad, Paul. It can, for some, feel like a bereavement. They shone a light on the stigma sometimes felt by individuals with additional needs - the scenes where Ralph, a young man with DS, was suspected of doing something untoward. These moments made me sob - the injustice, victimisation and down right ignorant attitude of some of the characters made me want to scream, but I am so glad that Bowker showed this, because it can and does happen. 

For me, personally, I thought it was a triumph - it opened the door for people to see that parenthood isn't always simple, it can be a lifelong challenge that doesn't always repay you in love and kisses; remember too, for many of us, it won't always end with children flying the nest and our freedom being regained. It conveyed the intense pain, joy and fight felt by Mums and Dads. Bowker revealed a world that still needs fine tuning to fully welcome and accept our differences. If it engaged people in conversation, if it makes someone think twice before they sneer at a parent in the supermarket who is dealing with a meltdown, if it encourages someone to offer a kind word or take the time to be a little more understanding, then it has done a truly beautiful thing. I hope it has achieved this. 

Finally…I want to end with an Edgar Allan Poe quote from ‘To My Mother’. Alison's actions were not always easy to rationalise but were those of a Mum learning to navigate this new ship, gripping on for dear life. I share her heartache, anxiety, determination and imperfections because I am Alison and I wonder how many other Mums felt the same:

“Because I feel that, in the Heavens above, 

The angels, whispering to one another,

Can find, among their burning terms of love,

None so devotional as that of a ‘Mother’”

Bibi xx

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NOTE: I have written this from my perspective of a mother, hence the quote. However, I know that there are a wealth of Dads who are fighting for their children day in day out. I know that because my husband is one of them. I truly believe a father is equally as devoted to championing and advocating for his child xx

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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