EDUCATORS, choose your words wisely...

As an ex teacher (of many many years), I write these words from both the perspective of a parent and a teacher...

This week has been wonderful, well until today. On Tuesday I watched on as my youngest, Bean, took part in her first Nativity. She was an angel, both figuratively and literally. With each new song, she sang the words, did all the actions and remained on stage despite a lot of her little comrades needing to be comforted by their parents. I left on a complete high - she had finished her first term of preschool, developmentally had come on leaps and held her own on stage. Her targets from October had been met and she had made it into the 30-50 month development bands (she was 3 in September).

Then today, I came to collect her from the Friday session to be greeted by a rather stressed looking Preschool Manager. She, LOUDLY, asked if I could stay behind and give her tips on how to "manage" my daughter. Rather unfortunately I had my eldest with me too, so the impending conversation had to be done while trying to keep both girls calm and sensible. She proceeded to tell me that they were "at the end of their tether" with her as she was emptying boxes repeatedly, had scribbled in books, had broken a few items belonging to the preschool - today she took the keys off their laptop keyboard, which was presented to me in front of onlookers of both staff and parents for maximum levels of embarrassment.. "We're short-staffed", "we can't accept this if it's costing us money". So, I questioned what the sanctions were for a child who is repeatedly disobeying their rules. This question seemed foreign - the reply left me rather dumbfounded  "no, we've never put her in time out, we just tell her not to do it again". We leapt from never instilling sanctions to "we think she should have a 1:1".

As any good educator knows, management of behaviour is a series of steps. Setting out expectations, finding a hook that can get buy in from a child to want to follow the rules and creating a pathway that works for both the child and school. Bean's keyworker has been away for approximately a month now - she has targets from her portage teacher and the preschool follow them. She has really missed her keyworker, frequently asking me where she is. Yet, none of this was taken into account. Instead I left feeling humiliated, that they didn't want her there and that a lack of staff planning had resulted in a rather difficult day.

Now, before anyone says I'm simply shifting blame or responsibility...I'm not. I believe if she misbehaves there should be a consequence - there always is at home. I even made this point in our initial meeting, reiterating a number of times that they would need to be firm. Instead I feel they've made no attempt to put in place basic, yes basic, measures to ensure she knows what is allowed and what is not. I respect that we often have to hear (or say, when we're on the other side!)  unpleasant things but it is the manner in which we deliver that information that leaves a parent feeling safe, secure and reassured that the child needs help, rather then they are a burden. It is also essential to keep a parent informed. Until today, I was under the impression that Bean was doing fabulously. She was attentive, making excellent progress and was kind. So today came as a shock. 

Being an educator gives you enormous power, with profound responsibility. Every word you utter provokes a reaction and a parent doesn't simply hear and forget; rather, they swallow it, digest it and frequently feel the need to regurgitate it over and over again. You are responsible for how difficult and sensitive information is delivered - you find a way to communicate that in an honest yet supportive manner. By conducting this in an open environment you are leaving a parent to feel exposed - you are laying bare all the inner concerns or worries that keep them awake at night. Privacy and compassion are essential - ask a member of staff to tend to the children so that you can speak with the parent, to allow them to cry (if they feel compelled to do so) without fear of upsetting their offspring; or simply schedule a meeting at an appropriate time where an open debate can take place and you move forward united in the best interests of the child. 

Anyone who has worked in the classroom knows that the end of term often brings out the worst in children who are tired, facing chaotic changes to their routines and are excited for the imminent arrival of the big guy in the red suit. Today, has left me feeling despondent and disappointed. After a term which has radiated such success, I move towards next week feeling like I want to pick Bean up and never go back.

So finally...Educators, teachers, keyworkers, please choose your words carefully. They have an impact and when a parent already has what feels like the weight of the world on their shoulders, you can make or break them. 

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

Follow me on twitter @BibiMac3

Thank you and Goodnight...

This week a very lovely lady that I know died. She was 42, a mother, a wife, a daughter and a professional. Her worklife was devoted to supporting and helping adults with learning disabilities- ensuring they had a safe home, access to work and an environment that met their needs. Her home life was one of happiness - she had longed for a child and had 3 years ago been been blessed with a beautiful little baby. She was a vivacious, enthusiastic, hilarious, dynamic, intelligent woman - her company made you feel confident, heard, understood and, as one friend described it, lighter.

When my daughter was diagnosed I sought out those who I had faith in, those whose experience or understanding meant I could talk to and who I believed would give me solace in our time of need. I will never forget the advice she gave me. She told me to just carry on as normal - to treat her like anyone else, not to suddenly see her as 'different'. Instead to embrace any of her nuances and expect nothing less than I would have done when bringing up my eldest. If my eldest got to have swimming lessons, do that with her. If my eldest sat on the step when she misbehaved, so should my youngest. She told me never to be embarrassed, never to worry what others thought/think, to focus on our road ahead and keep walking towards our goals.

I listened, digested & followed her advice and I truly believe my family is healthier for it. What she taught me was acceptance, not tolerance. She showed me that diagnosis is positive and it's not the label that counts but how you approach it. I wish I had let her know more vigorously what an impact she made on my life, her words entirely changed my approach and my reaction to our news. For the short time I knew her, she altered the future path my family would take and there simply aren't enough adjectives to describe the gratitude I feel for her wisdom and advice. It seems painfully unjust that her entire family is now bereft of such a lady. It made me realise how fortunate we often are as women to have these encounters, these friendships and how, in such a short time, we can share so much.

So thank you, thank you, thank you. Every conversation we had changed my perspective and opened my eyes to the very real possibility of hope and happiness. I wish that your time on this earth had been longer - you gave so much to so many and I know that you will always be remembered. 

Goodnight my friend xx

Dear Kindness...where did you go?

Dear Kindness 

"No act of kindness, no matter how small, is ever wasted." Those words were written by Aesop, an Ancient Greek writer who lived in the 6th century BC in Athens, Greece. It's true isn't it? An act of kindness, whatever that looks or feels like, is profound. It can be life changing in fact. So I'm wondering where you've gone? What happened for you to abandon us? or perhaps, what have we done to sacrifice you?

Over the last two years, specifically since 20 August 2014 (the day my daughter was diagnosed with a genetic deletion), you have become one of the most significant words in my life. I've clung to your importance, I've sought you out through professionals, friends and family. I've been disappointed when it feels you're absent, when I've heard people use painful words to describe individuals like my child. When I read a letter from a mother who lost her child to suicide, begging for you, for kindness from others. When I watched a documentary (A World Without Down Syndrome) that suggests the medical world wants to eradicate a type of person based on their genetic profile. I wonder when we lost all sense of direction and became so cruel - surely it's not who we want to be or should be. 

Kindness, to me, you are about suspending judgement - thinking before we speak, choosing our words, our language carefully. No-one wants to live in a hyper-sensitive world, where we cannot talk openly but we must also recognise the power of our words. They can damage us, they can limit us and, sadly, on occasions they can destroy us. Kindness, you are generous, warm, patient, forgiving...so often these days we choose aggressive, blunt, curt and pernicious language to assert ourselves. Why? Why have we cultivated this behaviour? From the snappy 'I don't care' slogans on our t-shirts, to our keyboard warrior antics on social media. 

Kindness, you invite us to take a breath, to pause, to consider others. To take the time to be thoughtful and just. I've been acutely aware of that need to be gentle, to be respectful, since my daughter was diagnosed. Ive seen people become uncomfortable by her (she's 3), yet still I have witnessed people feeling unsure or uneasy by some of her mannerisms. It would take nothing just to be kind, a few minutes of your time to smile, to say hello 50 times if necessary. Remember Aesop's words, no act of kindness is wasted. Truly, it is not.

Every action has a reaction, every word has an effect, every wound leaves a scar, every smile lifts the spirits and every act of kindness has an impact. In a world, which at the moment seems bereft of positive stories, we need you Kindness...we need you to shine a light on us all. We need to bask in the glorious truth that kindness has power, it breaks barriers and it unites us. So, Kindness, if you can hear me, please come back. 

Yours sincerely,

Bibi xx

Please comment below, follow me on twitter @BibiMac3 or here on Blogger 

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

Please follow my blog on twitter @bibimac3 or here on blogger. Don't forget to follow my blog by clicking the link to the side :)

On the eve of your 3rd Birthday...

Dear Bean...today marks the eve of your 3rd Birthday, a day I feel delighted to reach. This time three years ago I headed in for an induction - they began the process and warned me that I would be in hospital for at least 48 hours to allow the meds to take effect. Your Daddy decided he would nip off for some lunch and assured me he would be back quickly. He was true to his word & within 10 mins he was back in the room and rather surprised to see that I was in full blown labour, being told to walk down to delivery. In a further 50 mins you arrived. There was no time for epidural (despite me assuring the numerous doctors & nurses that I could definitely stop you coming out - clearly I was not thinking straight!). 

I was so proud to have given birth to you - you were a dinky bundle of love and joy to our family. It was without doubt one of the most momentous days of my life. I returned home a few hours after your birth, climbed into my own bed and the next morning your big sister, Bibi, came into meet you for the first time. It was truly magical. 

The next year brought so many heartaches and strains that this beautiful day soon faded - it became too painful to even think about and by the time we reached your 1st birthday I was almost defeated. I was so sad that I'm ashamed to say I spent most of the day in tears - I desperately tried not to be this way... being negative is really not in my nature but it was overwhelming & overpowering. I couldn't even face making you a cake. I know that must sound appalling and I feel terrible guilt about this but sadness makes you do silly things. I remember watching Bibi being so excited for you - I was so proud of her for how patient and kind she was when you were so unwell.

Within weeks of your 1st birthday you were amazing me...you caught up on so much, you were getting stronger, gaining weight and your character was blossoming. Over the course of the last two years you have become the most wonderful little person - nothing scares you, you meet every new day with relish and constantly want to learn. The bond you and Bibi share brings a smile to my face every day. 

This year I can look back on your birth with a smile & feel pride in how far you have come in three years. I truly believe you are destined for wonderful things - we, your family, will help you to achieve everything you wish for and all those loved ones who are no longer with us will forever watch over you. How I have missed their advice, support and company over these years.

Today also marks a year since I concluded my 'Happy Days' - it worked wonders for me. It made me focus on the positive people and things in my life. I realised that more good than bad happens on a daily basis, and those who court negativity have no place in my life. When I scroll back through my posts the thing I've learnt is that it's the simple things that make me happy - my family, my friends, my home. 

Without sounding melodramatic the last three years have changed the way I approach each day. Through all the challenges, pain and tears, I feel now I am truly awake, truly able to see what I need to do to make a difference. The last three years have been the hardest but best years of my life. You inspire me every day and I'm excited for the year ahead. 

So as the sun sets on your last day as a 2 year old, I wish that your 3rd birthday be as beautiful as you are.

Bibi xx 

Friday Favourites...Being a bit Crafty!

As a caveat to this post, I would like to say that I (by no means!) rate myself as a crafter...in fact 9 out of 10 things I attempt go seriously wrong!! I class myself as a trier, with more failures than successes. But I do quite enjoy tinkering and having a go. So a few weeks ago I got a little idea in my mind & thought it'd be fun to paint some glass jars, bottles etc to be used in my (soon-to-be) new garden. I thought it would be nice to have some bits that we'd made to feature in it. I also thought it'd be fun to use some passata jars as vases for the flowers I buy each Friday...you've got to love a 2 for £5 bargain at M&S ;)

So...I saved a few glass containers and grabbed me some paint...a few went disastrously wrong and a couple turned out ok. I simply poured some glass paint into the bottles & then rotated them to get lines of colour all the way to the bottom. I used two colours - orange and yellow. To be fair, the paint mixed up A LOT, so it didn't really end up the way of envisaged in my head...but they'll work for my house :) 

The girls and I have turned a few glass jars into candle holders too and we're going to keep doing a bit of trial & error until we really get the hang of this crafting business! 

Happy Friday All...enjoy the Bank Hol ☀️

Bibi xx

Please follow my blog here on blogger or on Twitter @BibiMac3 

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

Please follow my blog here on Blogger or on Twitter @BibiMac3

Happy Monday All...Snacks & Shopping

I've just returned from a rare but successful shopping trip with the dinky one...normally it's a case of racing round as quick as possible, supermarket sweep style grabbing of clothes off the rack, with my inner voice telling me I can return it if it doesn't fit (clearly there's no time for trying on...I'm lucky if I get time to find the right size!!). 

But today was awash with calm serenity - amazing I know. We cruised round the shops - took time finding the little summery bits we needed. I also found these really cool little foldaway shoppers for £1...which I'm in love with & know my eldest will totally adore too.

It was all thanks to an abundance of snacks and goodies I'd prepacked in my bag. It was bliss...the sun was shining, I had coffee in hand, sunnies on my face & the Bean's mouth was full of mini cheddars! Definitely a great way to start the final week of this half term, plus we got a big bag full of cool clothes to enjoy :) 

Happy Monday All! 

Bibi xx

Please follow my blog here on Blogger & on Twitter @BibiMac3 

This blog has been verified by Rise: R7a46f2835b70094fa377d580211f94bd

Friday Favourites...Williams Syndrome

Today is Williams Syndrome Awareness Day...I'm sure some of you will be wondering what on earth WS is. Well, let me enlighten you...or rather, let this quote taken from the WS website do the job for me! 

"Williams syndrome (WS) is a genetic condition that is present at birth and can affect anyone.  It is characterised by medical problems, including cardiovascular disease, developmental delays, and learning disabilities.  These often occur side by side with striking verbal abilities, highly social personalities and an affinity for music." (Taken from: https://williams-syndrome.org/what-is-williams-syndrome)

It is, essentially, a micro deletion of part of chromosome 7, which includes the elastin gene & others too. Clinical diagnosis can be reached with a FISH test, a blood test that shows the deletion. It can also be identified by certain traits such as facial features (sometimes described as 'elfin' - blue eyes, wider smile, flattened nasal bridge), symptoms such as hypercalcaemia (raised calcium levels in the blood), excessive vomiting (often mistaken for reflux), poor growth and a heart murmur. 

When I read that back to myself it sounds rather terrifying & it certainly can be. This condition has taken the lives of many children and adults due to serious cardiovascular issues. Developmental delays can be challenging too, learning to find methods to unlock skills & manage any health complaints. But not everyone is affected in the same way.

My daughter has Williams Syndrome, she has had it since conception. It is not a disease, she doesn't suffer from it, she just has it. We have been incredibly fortunate (so far) - Bean doesn't have the heart condition, which makes us feel enormously grateful. She did have hypercalcaemia and that was incredibly difficult to manage, as every GP I turned to dismissed it as reflux. We were hospitalised as a result of it, almost two years ago. We had to give her a very specific formula (Locasol) and a restricted diet until she was 18 months old. This also involved weekly blood tests, which, as you can imagine, was very trying and upsetting.

So, what does William Syndrome mean to our family? It means we are the luckiest four people in the world. We have been allowed into a world of wonder...we no longer worry about the petty and absurd things that troubled us before she was diagnosed, we have a daughter who has taught us more in 2 years then we ever thought possible & we have found comrades on our journey that have kept us buoyant & championed us in our hour of need. I can remember holding her in my arms when a consultant first uttered the words 'Williams Syndrome' and through the tears I thought, I wonder how many men & women would swap places with us right now, just to feel the joy (& sorrow, sometimes) of being a parent. How many women who have empty wombs and arms would give anything to love this precious little girl that we have? It made me silence the voice in my head telling me to be consumed by the sadness of why and the apparent injustice. 

Williams Syndrome is a tiny (and I mean tiny) part of my daughter - she is so much more than a label, a diagnosis. Of course, it will influence her character and, in some ways, the course her life might take, but it is not her in her entirety. It doesn't define her. She is clever, funny, mischievous, engaging & inspiring. She has propelled us to want more and to do more for other families with children with additional needs.  Without her we would never have met some of the most courageous people & fascinating experts - the ones who battle every day to keep their children,  themselves & their patients afloat. These people are the light in my life on any of my weaker days. 

So, my Friday Favourite today is Williams Syndrome. It is a life changing diagnosis and one that I probably wouldn't have chosen, but now I would never wish it away. In fact, I love and cherish it. If your child has WS or you, like me 2 years ago, are awaiting official diagnosis, then my advice to you is be brave and be patient...you are about to be given the most incredible gift. Even if your heart is breaking for your little person right now, they will sew it back together again for you. Your child is not a list of characteristics, they are not a set of predetermined traits and they are not all the same. WS doesn't have to mean an inability to live, to be independent or be happy. All of these things are achievable in many different forms - believe in your child, believe in yourself and they will inspire you in every way. 

There is life beyond a diagnosis and it will be more wonderful then you ever imagine. 

Happy Friday All...

Bibi xx

Please follow my blog on Blogger or on twitter @BibiMac3

http://www.williams-syndrome.org.uk/node/3 (UK SITE)

https://williams-syndrome.org/what-is-williams-syndrome (USA SITE)

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

Please follow my blog here on Blogger. You can also find me on Twitter @BibiMac3. Feel free to tweet me, comment or share my posts. 

Happy Monday All...Sunshine & Support

It's pretty hard to beat a beautiful day - the sun in the sky and, even more importantly, the time to enjoy it! It's been a Happy Monday for lots of reasons... playing in the garden with my Bean, watching her climb up the ladder to the slide (without any help from me - clever girl!), our new outdoor furniture arrived *yea!*, coffee & goss with my gorgeous next door neighbour. Just a perfect way to start the week. 

Today has also been significant because a truly beautiful friend has been brave and voiced her worries. This is no mean feat...I'm so proud of her for saying "I'm not ok" and now we, her friends & family, can put our arms around her and do whatever she needs to get back on track. It's what she would do for us & has done for us in the past. Friends come into your life for a season, a reason or a lifetime and I know that she will be by my side for life. She is kind, selfless and wonderful. As mums and women we rarely ask for help but we all need it from time to time. Admitting it is hard but it is the first step to moving forward. 

Happy Monday All! 

Bibi xx

Please follow my blog here on Blogger or on Twitter @BibiMac3 

Friday Favourites...Coffee breaks!

Yea for Friday...so despite the fact that I'm a SAHM (stay at home mum!) I still get that Friday feeling. One of the main reasons I get it is because it's the one morning a week that I get to myself. My little Bean goes to her child development centre on her own for two hours each week and this means that I get time to hit the shops or do some jobs. 

I never do anything glamorous or particularly exciting but I do grab a cheeky coffee & have a wander round. If I had told myself in my 20s that a solo walk round a supermarket each week would fill me with joy, I would've laughed at myself (or cried at the prospect of what my life was to become!!)...but it really does 😂. It's that sense of freedom that gives me a little lift each week. I simply adore being with my girls but it's definitely therapeutic to spend a little alone time sipping on some coffee and taking the world in, without worrying about any child related crisis!! 

I'm a firm believer these days that simple pleasures are the most valuable and this little coffee cup in my hand symbolises a teeny bit of freedom. It's just an hour or so of peace & quiet to relax...it's bliss. By the time it comes to pick up, then I'm dying to go get my girlie. Being greeted with big kisses and cuddles just makes my Friday all the more special. 

So my final thought is this - grab the simple gorgeous moments & enjoy them. They really are wonderful :)

Happy Friday All! 

Bibi xx

Happy Monday All...Roses!

What a perfect sight to be greeted with on my return from the school run...my lovely pink rose has started to flower. I have two roses at the front of my house... we planted them nearly five years ago in memory of my in-laws. A pink one for my Mother in law and a white one for my Father in law. 

I look forward to them coming into bloom every year and seeing one little pink bud today made for a great start to the week. I've said it before but I'll say it again, planting something in memory of a loved one is therapeutic in my opinion. Seeing these lovely flowers cradling my porch reminds me to smile and think about them with love and happiness. As much as I wish they were here to see these lovely blossoms, I always feel grateful that I had time with such lovely people. 

Happy Monday All! 

Bibi xx

Please follow my blog here on Blogger or on Twitter @BibiMac3

Friday Favourites...Black Nail Polish!

After all my talk last week about how I love bright colours, this week might seem a bit hypocritical. But my all time fave nail polish colour is black...I totally adore it and it's pretty much the only colour I will use on my nails (feet and hands!). 

I love when I first paint it on - it's shiny and beautifully dark. It kind of feels a bit rebellious - the sort of thing you would slap on as a teenager back in the 80s/90s!! 

The only issue I have is it chipping all the time because of using baby wipes etc, which lets face it, is not a good look. I've now got 2 different versions...I'm hoping one is going to withstand the nappy changes & day to day grind of mummyhood. 

Something about having my nails painted, a bit like having my hair done, makes me feel like I'm making an effort & lifts my spirits. Every little helps to keep a smile on your face :) 

Happy Friday everyone...enjoy the sunshine this weekend!

Bibi xx

Please follow Chromosomes and Coffee here on Blogger or on Twitter @BibiMac3 

Moving Mountains...One Day at a Time :)

Last night I read a post celebrating the successes of a fellow blogger's family*. It was full of love and joy at her children completing tasks that often can cause distress. As I read each line & witnessed each experience unfold in front of me, it made me realise how important it is to capture the beautiful moments when they happen. 

Last year I completed the 100 Happy Days challenge (yes, I know I've mentioned this before - I am slightly evangelical about it!!). What this aims to do is to get you to be more observant - to notice something that made you smile. It can range from enjoying a bar of chocolate to a special occasion. Each and every one forms part of your happiness awakening (so to speak - ha ha!). What this did for me personally was to focus my mind on the good and not tune into the negatives. This is no mean feat and certainly was not always easy. As time passed on this challenge, I learnt that far more good happens on a daily basis than I had previously realised. Since the completion of my 'happy days' last September, I have tried (not always successfully) to notice the positives. It's incredibly easy when you have children, with or without needs, to get trapped in the work: the washing, cleaning, school runs, homework, appointments...need I go on?! But just as this blogger did last night, she caught the good in her day and by doing so, reminded me to do the same.

As my daughter napped over lunch, I took myself into the garden and thought. I thought about how much we achieve on a daily, weekly, monthly basis and how many of these stepping stones are lost in the day to day flurry of activity. I started to ponder how far we've come and how much we've overcome. Each day we get little victories - they aren't necessarily life changing but they are meaningful. The simplest moments spent in idle pleasure are successes but not always given recognition. Spending the morning playing playdoh, cutting stars, rolling out wiggly worms...seeing the happiness beaming from her face as each squishy creation came to fruition is & was beautiful. That's worth celebrating. A walk round the shops listening to her gabbing away as we collected everything we needed for the week, seeing her play a matching game while saying and signing the word 'same' - gorgeous self satisfaction etched on her little face! Again, this is worth celebrating.

But it's not just the little moments...today my little Bean asked me to "blow the balloon". Although she's had lots of single words and even two word phrases for a while, starting to hear mini sentences appearing and the delight on her face when she gets the reaction she wants is sublime, in fact it makes me feel quite emotional. This time two years ago, she was losing weight, being sick constantly (I'm not exaggerating-she was sick with EVERY feed and even when not feeding there was a constant clear liquid being expelled from her little mouth). It was hell on earth - we were weeks away from hospitalisation. These were some of my darkest days. Then, this time last year, she had been walking for around a month, she was growing in strength, gaining weight, saying words and sounds. She was hooked into portage, a child development group and her hypercalcaemia had finally disappeared. These were all major achievements - huge successes but I'm not sure I ever celebrated any of them. Life was too busy, life had been too hard that perhaps this rising out of the ashes felt almost too good to be true. That by celebrating these beautiful moments, it was like tempting fate, like you were begging destiny to knock us down again. 

Despite every obstacle she has faced, she has fought like a little tiger. Nothing has dampened her spirit - if anything it has only served to exacerbate her determination. It is often my eldest that reminds me to notice the simplest successes - she has a lovely way of cheering her on. She, unlike myself, recognises that we move mountains every day, if only we took the time to notice and give ourselves permission to celebrate it. 

Bibi xx

Please follow my blog Chromosomes & Coffee on Twitter @BibiMac3

*The blog I was inspired by was the fab @Ojosworld 'Celebrating Successes' - beautifully written and reminded me why capturing these moments is so very important. Have a read :)

Happy Monday All...We ❤️ farms!

What a gorgeous bank holiday weekend! We've been incredibly lucky & had mild, sunny weather over the last three days...it's been bliss. 

Today we decided to don our wellies* and head down to one of our local farms. We're pretty fortunate to have a number of beautiful estates close to home, so we often take a little trip to see the animals and have a walk in the fresh farm air.

This is obviously the perfect time of year to visit your local farm as they are bursting at the seams with divine lambs, kids & piglets. I love lambs & kids but my all time fave is the piglet...I just love these little guys. Their little curly tails, their little snouts snuffling around in the mud, their short little legs dashing about after their mummy (Bluebell to give her her correct title!). Both my girls have joined the piglet crew and were desperate to give them a cuddle... thankfully there was a gate between them or I think my youngest would have been all over them! 

Once we'd exhausted feeding & petting all the animals, we ventured to the playground...the girls dived between swings, slides, riding tractors, racing on the zip wire (the big girl, not my little one!) and running around the sandpit. Despite the woodchip flooring (I swear this stuff is the devil's work), our little lady did pretty well getting around.

The smell of the food being cooked in their cafe was pretty intoxicating...but sadly we didn't try any. Next time though I won't resist. 

All in all, it was a truly lovely way to spend our bank holiday as a family. Plus, it always feels good to support a local business.

Happy Monday All! 

Bibi xx

Please follow my blog on Twitter @BibiMac3

*My wellies (magenta field welly) are from Joules . I've just checked online and found them for only £20 on this website - wish I had seen this before I bought mine a few years ago!! My big girl's ones are from Hatley - amazingly comfy, bright and gorgeous :)