Friday 27 May 2016

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 

Wednesday 25 May 2016

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

Monday 23 May 2016

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 

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Friday 20 May 2016

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)


Wednesday 18 May 2016

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. 






Monday 16 May 2016

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 13 May 2016

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

Monday 9 May 2016

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 6 May 2016

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 

Wednesday 4 May 2016

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 :)


Monday 2 May 2016

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 :)