Angels, Aleppo and Appreciation

**I wrote this last year but discovered it again this morning. I wanted to share it, even if it's somewhat out of date & a slight departure from what I normally focus on **

Today has been a game of two halves - two polar opposites of emotion. I went to bed last night consuming the news coming out of Aleppo and as my head hit the pillow, tears rolled down my cheeks. With each new tweet the horrors unfolded...medics being murdered, those loyal servants to their people who have worked tirelessly to protect & mend their fellow human beings, women and children reportedly being executed on sight and hundreds of men missing. I watched videos of Syrians begging, yes begging, for international support, for salvation, for our aid. This is not new - they have been calling more intensely on us for several months now but government after government around the world have put their hands over their ears and eyes. Members of the public who have become so used to these images, Tim Farron described it as 'compassion fatigue', have become beguiled by fanatics telling us these children, these families needing our help are terrorists wanting to harm us.

I can openly admit that I have become somewhat obsessed with Syria, with Aleppo. I feel no shame in that - my obsession comes from a place of disbelief that we have not helped, that genocide is taking place yet we, humanity, has become so isolationist, so self absorbed that we have idly sat back and allowed this massacre come to pass.

This morning as I brushed my eldest daughter's hair, I tried to imagine what my fellow parents were enduring in Aleppo. With each brushstroke I pictured the devastation of not being able to protect your child, knowing that your life was likely to be lost and I wondered the fury that must be racing through their veins knowing the whole world knows what is happening and is simply ignoring it. As we walked to school I felt a sense of both sadness and appreciation. Sadness at being so utterly redundant to help, so pathetically incapable of making a difference. Appreciation that we were free and safe to live life - to criticise our government without fear of reprisal, to question decisions, to walk in our town without threat of violence. I felt an overwhelming sense of guilt at that feeling - why should some of us be lucky and some not.

I then attended my youngest daughter's first Nativity...it was a beautiful cohesion of shambolic loveliness. Little people singing, dancing, forgetting their lines, pulling their skirts up over their heads and yet it was entirely peaceful. As I watched Bean, again I felt total appreciation for seeing her fulfilling the role of angel. Three years ago, I wondered if my little baby who was skin and bone, floppy and desperately unwell, would make it to her first birthday, let alone the joy of her first show. As that sense of gratitude washed through me and I listened to the Priest's words about reminding ourselves to be kind, to care for others and protect one another, I felt both hope and despair. Hope that Bean had achieved so much and despair of the world she was growing into.

The juxtaposition of those emotions reminded me to never stop thinking of those people in Aleppo, to not remain silent & pretend it isn't happening. To shout from the rooftops that we must do more to be kind, to care for, to protect. I've lost my faith in God, in fact I'm very angry with him, but I do hope that the messages I heard today disseminate. For every awful atrocity that we hear of, it is a scar on humanity. It should hurt every single one of us because the day it doesn't, we are truly lost. With every cruel act we are consistently seeing both the negligence & then the beauty of mankind. Men and women running to help, people donating time, money, possessions to those in need. If that behaviour, that spirit, could be channeled up to government what a difference we could actually make.

Bibi 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 :)

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 

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 :)

Friday Favourites...COLOUR!

So apparently "the purest and most thoughtful minds are those that love colour" (according to John Ruskin, an art critic from years & years ago...I only know this thanks to Google). Well, I absolutely do not possess a pure mind, although I hope at least it is thoughtful; but I simply adore colour...the brighter the better & if it clashes then we've pretty much hit the jackpot!

Over the last few years I have become obsessed with bright, bold & brash colours - I basically want everything around me to bring a splash of rainbow. I think my husband is relieved that this passion didn't spring when we were decorating our house four years ago...otherwise I dread to think what I would've done! I seek out anything that is colourful - from utensils to art work*...I might even have bought myself four luminous cleaning cloths this week (I know, ridiculous, but if I've got to clean I might as well be holding something vaguely cheerful - this is what I'm telling myself anyway). 

Our utensils pot and cutlery drawer kind of represent a clown's approach to accessorising & furnishing a home but I am unashamedly proud of my choices ...the husband is pretty good about my love for all things vibrant. I do sometimes wonder what he thinks as he delves in to grab a knife & fork and is greeted with a crazy menagerie of hues, tones & tints! Can I just add that the picture of my cutlery is after a major spring clean…it normally does NOT look like that.

I adore Cath Kidston, so my tableware is a full on chintz overdose, mixed with random coloured cutlery. I can almost see my mum squirm when I hand her a mismatched knife and fork!! But I love it - sitting down to a vivid table, all agleam with oranges, yellows, pinks... perfection. I've now invested in coloured glasses, champagne flutes & everything else you can imagine. Today, I excitedly (yes, I'm embarrassed for myself) bagged a little bargain from Tesco...a pack of 4 plastic garden tumblers for £1.50. Though, I have zero intention of waiting for a sunny day to enjoy these beauts...they are already stashed in the cupboard waiting for the girls to enjoy. 

For me, colour represents feeling - the more sumptuous the tones I am enveloped in, the better I feel and these days I truly believe that you need to do whatever it takes to keep smiling and positive. The more colour I inject into my home, the brighter my soul feels.

Happy Friday and hoorah for the Bank Holiday weekend...yea!

Bibi xx

Follow my blog on Twitter @BibiMac3

*My pictures are from: 

Nick Prints - Beatles, London Rocks & London Calling

Yoni Alter via King & McGaw - London, Paris & Rio

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

Please follow my blog on Twitter @BibiMac3

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

Please follow my blog on Twitter @BibiMac3

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