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

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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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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

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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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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

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