Today is Not the Day...why I'm not ready to tell my daughters.

I'm starting this post with a little dose of trepidation...I'm usually not one to worry about people's opinions but this subject makes me feel somewhat uneasy and I'll explain why. One of the questions I frequently struggle with is when and how I will discuss my daughter's diagnosis with her and her sibling. Yes, two years in and I still haven't talked about it with my eldest. She understands that her little sister was unwell during her first year but since then she has thrived in lots of ways, so it has never felt necessary. When we discovered that our daughter had a genetic deletion, I remember thinking how much better life would have been if we didn't know. How we would have allowed her to develop at her pace, without the constant scrutiny, notes and discussions. Whenever I start to go down this route, I remind myself how immensely beneficial the diagnosis has actually been to her and us...it's given us a head start - we've been able to work on targets, focus our minds on what we need and have to do to open up all those neural-pathways. This intervention has worked and I'm grateful for it...but it doesn't stop me from querying the what ifs and if onlys. 

Without doubt, the knowledge has had two major effects - positive in the sense that I'm aware of how to support her and negative in the sense that it's easy to 'blame' the condition. I have a tendency to fixate on the characteristic traits e.g. being over friendly or a 'cocktail personality', as it's so eloquently described. Over recent months I have obsessed about this and worried intensely about its potential. I've allowed myself look too far ahead, that hazy future none of us have control over but we desperately want to organise and manage. It's taken me to a whole host of scenarios that leave me in a cold sweat. A few of my lovely friends of late have recognised that I'm worrying and have reassured me...they've reminded me that plenty of 2 year olds wave and say hi to people...that my incessant stopping of this is almost squashing her vivacious personality, something she inherits from my husband's side of the family, not necessarily just from her deletion. She certainly doesn't say hello to everyone and can become very shy if someone talks to her - all totally appropriate for her age; but I've allowed her label dominate my reaction to this. Obviously, my intention is to keep her safe and to teach her about boundaries; but my knowledge has affected how I've responded to her behaviour. 

My fear is that by telling Bean, by telling Beebs (her sister), they might respond in the same way that I have. I might limit their expectations of what my gorgeous girl is capable of. Will they read this long list of traits and allow it colour every decision they make? Will it propel them to live in fear? Will it make my daughter see herself as a label, rather than an individual? Of course, these are all unanswerable but they can become tormenting if I allow.  

The truth is, at some point we will have to have that conversation. We will have to tell her about her condition, as there can be health risks attached to it and consequences if she goes on to marry or want a family. I suppose what I'm trying to say is, I want her to have a life unburdened by a diagnosis. I want her to live without the worry that 'different' can bring...but that's just not possible. I don't want her sister to be sad, to suffer guilt (something I know many siblings can feel), to feel responsible for anyone but herself. These, though, are the cards that we have been dealt and we have to face them as a family - us against the world. I would love to keep it a secret to allow her to just live life like everyone else but I suspect that this is unrealistic and would be unfair to both my girls. In fact, they might not react like me - they might embrace this knowledge and champion it, something I want to do too. I'm sure, they would probably teach me the right way to digest the emotions and concerns.

Diagnosis doesn't stop when the doctor utters the words to a parent...it can be a torrid journey that shows no mercy to its traveller. Every step forces us to make a new decision, to manage a situation/emotion, to find the best way to cope. We won't always get it right, in fact we often get it wrong. Ultimately, my main reason for not telling either of my girls yet is that I want them to live a life beyond limitations. I want them to uncover their strengths and weaknesses first, rather than be presented with a list of who you are or, rather, who you might become. Life's joy is discovery, freedom and evolving into an individual...both of my daughter's deserve that. So, for now, I'm going to allow them the peace and quiet to do just that...when we need to we can talk, explain and work through it all together... but I don't believe that day is today. For the time being, I want them just to enjoy the here and now...something I'm learning to do too. 

Bibi xx

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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

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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

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*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

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

Happy Monday All...Random acts of kindness!

One of the most wonderful things you can do for anyone is be kind. As the saying goes, it costs nothing...it has real power to makes us feel loved & cared for. Today when I arrived home from the school run I found a little posy of tulips on my doorstep. I instantly knew they were from my next door neighbour, as we regularly play flower-tag! We've both had a very tough few years but we've still had to plod on as mums and as women. Whenever there has been a problem we've known that we are only a knock away...this gives me such a sense of wellbeing, it's untrue. I'm a big believer that the simplest thing can make someone happy and feel protected.

I've been lucky to always have a really gorgeous circle of friends - they all bring something unique into my life and I hope I do to theirs. I simply couldn't function without my friends...I never understand women who say 'I don't get on with girls' - I find that totally unfathomable. The women in my life are so wonderful - each and every lady I know is special to me. I love the conversations we have, the laughs, the tears, the nights out, the long lunches (when we actually get the time!!), our moans about family stresses, the times we lean on one another...every ounce of them enriches my life. If you don't 'get on with women' then I urge you to have another go. A female friendship is a wonderful thing. 

Happy Monday!

Bibi xx

Follow my blog on Twitter @BibiMac3

Be Brave

In February last year my youngest and I were invited to join a Child Development Group…it was sold to me as a ‘Family Support Group’ and, if I'm honest, the prospect made me feel uneasy. I couldn't visualise what this group would look like - would we be expected to bare our souls? to share the finer details of our children’s woes? I attended nervously…I almost backed out at the last minute but decided to brave it and welcome the opportunity.

What I didn't realise when I opened the door is how much it would transform my life, let alone the progress my girl would make. I walked into a preschool setting but one that was totally unique. Instead of the hustle and bustle, noise and chaos of most groups, this was an educational play session that catered for a select group of children and families. We were all, despite our varying diagnosis, in the same boat. There were no judgements, no insensitive questions, no boasting about possessing a genius child…rather, it was etched on the face of every parent that we were here to support our children, to give them a safer and more secure environment to work within. What a relief! 

Each Mum was at different stages of the diagnosis process: some were seasoned pros, a few were in the initial stages of assessment and one or two were consumed with a sadness that was palpable. As each week passed we got to know one another more intimately. We shared our stories, gave advice where we could, we laughed, complained...but, above all, we supported one another. I have learnt so much from each and every one of these women…I've realised that, more often than not, Mums are at the coalface of these groups. My husband works. A lot. I'm fortunate that he does but the end result is that I attend all these sessions or appointments alone, just like most of the women in this group. You have to staple on your brave face, breathe in the fear you feel when you attend a meeting, swallow the emotion as it wells up each time you have to express information about your child’s condition, strengths or weaknesses. It's all consuming and takes courage - sheer grit and determination. Every woman I have met at this group is endowed with an inner strength that they probably didn't know existed, until they were faced with these challenges. 

I'm a big believer that the right support is essential - it cannot simply come from your family and close friends. Whether it is portage, local services provided by your council/borough, charities…wherever it is, you have to tap into it. The group that we attend has given our children the skills, resources, time and care to find successes. They have given us the tools to support, engage and manage our children. Most of all though, it has allowed us to create a network of women who can lift one another up, strive for each other and cheer each other on. We can sob openly if we are having a bad day and we can laugh heartily when the better days are upon us. 

Many of us have overcome the grief now, whereas others are in the midst of it…some days you can almost see the ‘black dog’ walking beside them, nuzzling their legs and demanding their attention. This has made for painful viewing - anyone who can empathise with this experience knows that this sorrow, although ever present, minimises and the gloomy fog clears so you can begin to see the horizon again. When I see some of my now dear friends so consumed by this sadness, I want to do anything I can to reassure them that the diagnosis is a start pointing, not a shackle. It ‘should’ open doors and it ‘should’ promote the start of a new journey (I use should because I know we have been lucky - not everyone is). It won't always be a smooth track but your eyes have been opened to what you need to do and hopefully, with guidance, who can help. 

The advice I would give to any newly diagnosed parent is be brave - channel that heartache into proactivity. Push every ounce of your sadness and anger into seeking out support. When I opened the door to the Child Development Centre I anticipated all the negatives, I was so wrong. What a mistake if would've been if I had allowed fear take over and stayed home. Being brave leads you to face things head on - we fight for our children to make their life better, we fight to keep ourselves afloat, we fight because we have no other option. I made a decision when my daughter was diagnosed that I could either lay down and die or I could champion her. She is my life’s work now, just like so many of the Mums I have met. 

The group that we have formed now transcends our CDC - we are now a team, a united force working together to support our children, to sustain one another. Starting a simple Facebook group for these ladies is one of the proudest and best things I have ever done. I was nervous suggesting it but I am so grateful I took the plunge and did it. No-one should walk this journey alone. It troubles me to think how many parents might be at home or at work each day feeling abandoned, isolated and trapped. I would urge anyone in this position to reach out. Send a friend a message, explain how you feel. Search your local authority's website for local services. Contact Mencap, Scope, the charity that supports your child's diagnosis. Do whatever it takes to challenge the status quo. There is no shame in feeling sad, there's no shame in asking for help. You can't control the diagnosis but you can absolutely control how you personally deal with it. Above all, be brave and believe that you can do this, because you can. 

Bibi xx

Follow my blog on Twitter  @BibiMac3 

What a week!

This week has, quite honestly, been fabulous. A month ago I officially resigned and became a stay at home mum. I knew this was the right decision for my family, particularly for my daughters, but it was extremely painful. I left a school that I have worked at since my early 20s...during my time there I met some of the most incredible children, parents and teachers. Walking through the school gates felt like opening the front door to my home. I felt safe there, inspired there and part of a community. So, as you can imagine, finally saying goodbye was sad. Beyond sad in fact. It seems though I'm not alone in this - lots of my friends who have resigned also feel like extricating yourself from your job is almost like closing the door on who you used to be. It's the end of your life as a professional, as a worker, as your younger self. This feeling has lingered with me...until two weeks ago and particularly this week. 

Starting this blog was something I've longed to do since I completed the 100 Happy Days challenge in 2015. So to finally achieve it (and to have people reading it!!) has given me some direction and purpose beyond my motherly duties! I need that. Professionally I'm a driven person, so this is giving me targets...what shall I write about? How will I come up with ideas?!! It's making me notice things a little more, which surely has to be a good thing :) 

I've also been fortunate enough to be invited into a SEND bloggers group - I'm hoping to learn lots from more experienced writers, to improve what I'm doing and make it the best that it can be. 20 months ago I couldn't see a way out of the heartbreak, the diagnosis that I thought was going to colour every moment of my life...I wish I had realised then that it would propel me to try new things, allow me to meet such brave parents (who are now gorgeous friends) & to relinquish all the nonsense that once obscured my vision. C.S Lewis was spot on - the hardships have given me a fresh start and I'm relishing it. 

So, to anyone that has taken the time to read or comment on my posts over the last few weeks, THANK YOU. Thank you from the bottom of my heart. 

Bibi xx

Follow my blog on Twitter  @BibiMac3

Don't Forget...

My first foray into motherhood was in 2009 when I gave birth to a big beautiful girl. She was quite honestly the most divine baby...please don't hate me when I say this but she was one of those babas that slept through from around 6 weeks *runs for cover as people start to shout at their screens* and took to milestones like an Olympic athlete. Nothing challenged her, she just whizzed through the first year like a champ. I totally adored every moment of my maternity leave with her...I only wanted to be by her side and when I wasn't (when I returned to work part time after 10 months) it felt as if someone had cut off one of my limbs, such was the loss I felt. 

What I didn't realise then, that I do now, is just how good I had it. Sure - I knew she was a contented baby but I was blind to how much motherhood would change for me as the years passed. My eldest has taught me what true patience is - she has never complained about the time I had to devote to her younger sister during her first, tumultuous, year. There was an unspoken understanding that I had to focus on this fragile little being that had invaded her home...somehow, even in her fledging years, she had embraced this truth and accepted it. Without question, she missed out on things and this pained me (it still does)...but at that point there seemed no other way.

As the years have elapsed, I have been determined to put this right. When I write things like this, I always feel a bit silly...I obviously don't get it right all the time - I make mistakes everyday but I'm trying to make a conscious effort to enjoy quality moments just us. We had 4 years being a little double act, so whenever it's our time we instantly slip into our old ways...and I love it. Last week, because of the Easter holidays and my husband taking some time off work, my mini-me and I spent lots of time together. A cheeky cinema trip to see Zootropolis (which, by the way, is brilliant!) and then a lovely hot chocolate (obviously I had coffee - I pretty much have an IV of coffee plugged in at all times) with chats about everything & nothing. 

Just being with her makes my life richer - she reminds me of my wonderful first moments of becoming a mum, she made me a much better person and I will be eternally grateful that she is mine. I know that her journey as a sister differs from most and for that I feel guilt that is beyond expression. The future is hazy and I know we have so many difficult conversations ahead of us. The grief, that we have come to terms with now, is yet to be digested by her. I would give anything to take that away from her but I can't. So instead we have to face it together and savour the gorgeous moments - the days out, the hot chocolates, the giggles and her incessant love of spending my money!! 

Having a child with complications, whatever they may be, makes life challenging but I'm working hard not to forget that it's equally hard for their sibling...so don't forget to catch the simple opportunities to let them know they are still your darling. 

Bibi xx

Follow my blog on Twitter  @BibiMac3

Happy Monday All!

Since becoming a SAHM I secretly love Mondays...it's normally a quiet day in my house - we get jobs done and generally enjoy the peace after the whirlwind of the weekend. 

I thought I would start a little diary of our week...I will endeavour to include what we do, places we visit and talk about the child development group that we attend. So here is today's xxx

Back to School:

Today marks the end of the Easter Holidays (sob sob) and the start of the summer term (yea!). I adore the holidays with my girls - I love the feeling of having no ties, having long leisurely brekkies & making our own plans without restrictions. My eldest made a list of '10 Spring Things' that she wanted to do over the hols...and we pretty much did them all. It ranged from a PJ day to the beach. It really was a gorgeous two weeks :) 

So when the alarm screamed at me this morning at 6.30am, I felt pretty miserable. Suddenly you're back to the grind...back to school runs, pack lunches, racing around all day trying to get stuff done in time before pick up. My big girl, on the other hand, was thrilled to return to school. She skipped all the way down, eagerly telling me about how excited she was to see her friends and her teachers...to be honest, as much as I love having her home, I equally love hearing her delight at returning to school. 

Potty Training...aghhhhhh! 

My youngest has been telling me for some time when she has gone to the toilet...she's just over 2.5 and despite her diagnosis, I've always treated her exactly the same as my eldest. I have no idea if that's what I should be doing but it feels right to me, so I'm going with it. I decided this weekend to take the plunge and just start. I'm going to level with you - potty training is my absolute least favourite stage...I know the end goal is amazing - no more nappies (well in the day at least), one less thing to spend my money on & just the awesome sense of achievement that getting your child dry gives you.

So far today it's been one long wee-athon. She has managed to wee everywhere (& I mean everywhere) except the potty. She's a total pro at telling me where she's done a wee but just doesn't seem that bothered to get it in the potty!! I think I need to invest in a whole batch of them to dot around the house to get the odds more in my favour. If anyone has any foolproof tips for me, then please feel free to share...I always welcome comments or tips. I know we'll crack it - fingers crossed over the next few weeks...well, here's hoping anyway. However, this pretty much sums up how I feel this evening!

Wishing everyone a Happy week...may tomorrow bring wee to our potty and not my carpet!! 

Bibi xx

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I am Somebody...

Last year I watched a Ted Talk by Ruth Pierson. called 'Every Child Needs a Champion'...I found it so inspiring and uplifting that I wanted to write about it. For my entire twenties & my early thirties I was a teacher, who also worked within the Inclusion team. I adored teaching, I was enthusiastic to get out of bed every morning - eager to get to school to make an impact on the children's lives. Now, I'm not for one second suggesting that every single lesson I wrote or delivered was outstanding, of course not, but I did truly believe in my profession and the children in my class. 

Being a teacher is a privilege - you can enable children to excel and achieve, you witness lightbulb moments when something just clicks & you share in their discovery/enlightenment. But not every child gets to make these leaps as instantaneously as others. You can see the prospect of learning is exhausting - mentally, physically & emotionally. Imagine how that must feel? That every day is a chore, a battlefield even. You have to fight to stop yourself drowning & yet you are still expected to fit into a rigid school environment that only bends & flexes if you are fortunate enough to have a passionate teacher, Head, Inclusion team & LSA. All of those individuals play an integral part in keeping a child with additional needs buoyant & successful...they are the child's champion.

Having been at the coal face of education, it is logical then that I face the prospect of my youngest's steps towards school with rather a high dose of anxiety. I feel frustrated that so many factors need to align in order for her experience to be fruitful. For the last 2.5 years I have been her champion: I have fought for her, I have knocked down Drs offices, pestered Consultant's secretaries, I've worked on every target set, attended endless appointments on her behalf, brought myself to my knees at times because I am determined to see her succeed. Relinquishing the reins is a challenge, but I hope that the school of our choice will echo my feelings and champion my daughter - in her strengths and her weaknesses. 

Rita Pierson said: "I am somebody. I was somebody before I came and I'll be a better somebody when I leave. I am powerful and I am strong. I deserve the education that I get here. I have things to do, people to impress and places to go. If you say it long enough, it starts to be part of you." These words are true - every child is a somebody. Every child deserves their education. I hope that all teachers watch this video & take note. To hold a child's education in your hands is a precious gift. You get one chance to make a difference, one opportunity to make an impact and one year to show a child that they are important, worthy & valued. It is irrelevant if the child before you is surpassing all expectations or not...the responsibility is yours & you must respect it. Thank goodness for teachers like Rita Pierson...may other educators take her lead. After all, as it has been said many times before "To the world you may be one person but to one person you may be the world." Every child needs to be treated as an individual & every teacher has the power, in fact the duty, to empower them to reach their goals. We are all Somebody. 

Bibi xx

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In a bubble...

One of the overwhelming sensations I've had since my youngest was diagnosed is this sense of being in a bubble, one that's segregated from everyone else and their own perception of the world. I feel totally separate and apart from everyone else. It's not that anyone has done anything wrong or that I think I know better but I simply feel my world is divided from the masses. One of the feelings that often creeps into my mind is 'I wonder what the future holds' - this has so many connotations that it would be impossible for me to articulate where that question can take me. 

Then today, I was confronted with what my future might be. It was like opening a window into possibility...no certainties exist but I'm always intrigued when I see someone else who I would consider 'part of the club'. I stopped into a coffee shop to grab a quick drink to go. As I waited in the queue I noticed a mother and daughter in front of me. I instantly sensed something was different - simply by the body language and how her mother was talking to her. As the girl turned to me it was clear she had DS. I felt an overwhelming sense of connection to this mother and daughter. I wanted to talk to them but that probably would have made me look crazy but I almost wanted to say 'Help! How do I navigate this path to where you are now? How do I make sure my daughter is happy? Safe? Living life?' Obviously I wasn't brave enough to voice all those thoughts but I'm sure if I had the mother probably would've taken pity on me and shared some of her wisdom, or at least I hope she would have done.

As I waited for my coffee I watched them find a table, sit opposite one another and have a conversation. The girl kept her head bowed most of the time - perhaps she was shy, maybe embarrassed or maybe that was simply how she preferred to sit. Her mother got up from the table to use the bathroom and I noticed that this young lady virtually tried to disappear in her seat so people wouldn't look at her. I could've cried. I wanted to tell her to hold her head up with pride - she was a beautiful girl. Lovely long hair, a gorgeous face, definitely not one to vanish from the world. I wondered instantly whether that would be my daughter in the years to come. Whether she too would feel the need to shy away or feel out of place in this very, at times, hostile world. It opened up worries and anxieties that are ever present but rarely shared. 

Coffee in hand & thoughts stowed away, I left that little window behind me. I closed it for the time being but I didn't lock it. The future is the unknown and although I was able to paint words from this simple little scene, there's every chance this young lady was having a quiet day - maybe she didn't want to go for coffee with her mum (she was a teenager after all!), maybe she'd been out with her friends the night before and was feeling delicate or maybe she was having an off day. You see, every moment that you capture and fill in the gaps, can either be accurate or inaccurate. You can chose whether to see the negatives or find the positives. Although this little moment tugged at my own insecurities about the road ahead, I might not have been seeing it clearly. The fog clouds your own thoughts that sometimes you project your own concerns on to others. I might never be able to fully lock away those troubles but I can try to always balance them against what could be. What could be is a mystery but it might be wonderful...wherever our bubble takes us, we will (like the mother and daughter I observed) be there together. 

Bibi xx

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Waiting for the call...

In 2013 I gave birth to my second daughter. It was simply the most spectacular day of my life - I pushed my heart out and was rewarded with a beautiful little girl. She sat on my chest, opened her eyes and I was besotted.

Immediately though, something didn't feel right. She was well over 1.5lbs lighter than my first and seemed tiny in all proportions. The midwives examined her and apart from a tongue tie she was deemed 'normal'. No heart murmur, no distinctive features, all in all she was classed fit and I was sent on my way within hours of delivering her. 

And so the battle began...nothing ever clicked for my little lady. Feeding was a disaster, endless hours of screaming, having to be constantly upright and none existent weight gain. She was prescribed milk and slowly things started to improve. Hooray I thought, I've cracked it...oh how wrong I was. 

By Christmas she was napping like a pro, hitting milestones and I felt I was getting into my stride. Within a few months, everything was to go sour. By Easter, she was severely ill with every feed, cascading down the percentiles and all health professionals seemed oblivious to the downward spiral I and my precious girl were on. I was practically door-stopping the GP and insisted she be seen by a paediatrician. Finally, we were seen. Bloods were taken and the start of our genetic journey was to begin. 

Following my first appointment with a simply gorgeous Dr, we were sent on our way with hypoallergenic formula (I'll be honest, I knew this was nonsense and wouldn't make the slightest difference). Within a week, she was even worse and could barely keep a drop of water down, let alone milk. My husband was working abroad and I was starting to crumble. She was now becoming desperately unwell and was struggling to wake from her naps. My limit had been reached - A&E was our next stop. 

Finally a Dr started LISTENING...she heard my concerns and started saying the things I had been thinking 'why isn't she growing? Why has she suddenly started missing milestones?'. The second set of blood tests, along side the first set taken, showed that she had raised calcium in her blood... hypercalcaemia. She was admitted to hospital and suddenly all hope started to disappear. It wasn't simply reflux, we were now facing cancer, a genetic syndrome or the unknown. 

Moments like this leave you feeling in such pain that you can't possibly find the words to do it justice. As Beckett wrote 'words can only say but never mean'...I could pluck a million adjectives from the ether but I would never be able to capture the fear, hurt and devastation that my husband and I felt that evening as we held our lovely, defenceless girl in our arms. The image of my sobbing husband holding her will remain with me until I depart this life.

We would have to wait a further 8 wks for final confirmation. That day would come on a beautiful sunny day in August 2014. The specialist called...I knew as soon as he said my name that the news was bad. I knew he would say that my sweet girl had genes deleted, that her whole life would be changed forever because for some reason her little body worked against her when she was forming in my womb. 

On that day it felt as if everything stopped. All happiness and hope for the future had been sucked from the world. No more could we hope for weddings, grandchildren, school party invites...normality...the future was hazy. In reality, nothing had actually changed, just our perception. None of us know what's in the future - where or how our children will end up, but we paint a picture in our mind. We convince ourselves that our version is the one that's real, when in truth there are no certainties. Her specialist made this abundantly clear to me as I listened to his voice over the phone..."the only difference for your family is you have a diagnosis, something that means you can preempt and prepare for the future". At the time this seemed blasé but now I hold on to this. I believe in his words.

Over the last few months and years I have spent every day playing with my daughter - watching her develop and seeing her come on. On many occasions I have felt overwhelming sadness when I've looked into her eyes, I see the battles ahead, of which she is oblivious. I have to work very hard to repress those feelings and to focus on the positives. I have also spent vast amounts of time (every day in fact) waiting for the call...you know, the one where they tell me they've made a terrible mistake and it's not true. I'm sure this is part of the grieving process and is 'normal' but it's like a cruel trick. Deep down you know that phone call isn't coming but yet somehow you tell yourself it will happen and you imagine how you'll feel once you know this episode is over...how you'll phone your husband, your mum, to rejoice or tell your friends that you're back in their club, the one without complications. It's a callous stage and one that slowly chips away at your resolve. You're no longer part of that group who look forward to the future - it's just too hard to contemplate. I catch myself feeling such anger towards total strangers who appear to just be free to live, without the concerns and pain that we feel. My patience for the day to day moans and gripes of others makes me want to scream. Of course, the truth is, we are all fighting and facing our own demons, but when you have a child who has a diagnosis or difficulties you can't help but feel in a very solitary and lonely little world. 

But as each day passes, and no call comes, then you start to realise that it is true. That your perfect imperfect baby has a condition and it's never going away. That the love I felt as she lay on my chest after I pushed her from my body is still present and grows stronger every single day. Having a baby is a lifelong commitment, with or without a genetic diagnosis. Yes, we expect our children to move out and pursue their own lives, but my expectations for my daughter will not alter despite my new found knowledge. I will still strive for her to achieve independence, love, joy, relationships, friendships, fun, employment and a future filled with happiness. I refuse to embrace this diagnosis with a heavy heart and lower my expectations. She will achieve because she has an army of people surrounding her that will expect and enable her to do so. 

So my parting thought is this...stop waiting for the call. The likelihood is, it isn't coming and by spending your days waiting for it you will be distracted from the beautiful human being that's in front of you. Nothing in life is certain, nothing is perfect and even in your darkest moments there will be another soul somewhere feeling desperate and hopeless in a situation more grave than your own. It is a diagnosis - a tiny part of your child, not them it their entirety, it's not a life sentence. Your little person would not be who they are without it. So, stop waiting for your phone to ring, breathe in & out and start living life again. 

Bibi xx

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