Angels, Aleppo and Appreciation

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 I wanted to share it, even if it's somewhat out of date & a slight departure from what I normally focus on **

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

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

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

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

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

Bibi xx

Hope Is A Waking Dream

Yesterday evening I had one of those awful moments where something happy led to a wave of sorrow. We'd had a great day - fab news from Bean's observations from her keyworker at preschool; things like that always lift my spirits and make me feel confident in the approach we're taking. We'd come home, played some games, sang a few songs and laughed a lot. As I held her in my arms and looked into her smiling eyes, I felt a tsunami of emotions hit me. 

In an instant I'd leapt forward 10 years imagining having to discuss the difficulties she might face...the major one being sustaining relationships or having a family. I pictured this beautiful person suddenly having a whole wealth of problems and anxieties firmly being sewn to her shoulders...and my heart broke. Knowing that it would be me, my voice, sharing that news with her and being aware that I'd be watching her innocence evaporate as each word would be uttered.

You see, the every day doesn't frighten me. We live and breathe genetics and the impact it has on our lives - for the most part we've been incredibly lucky and she has been quite the enigma, rarely possessing the vast traits of WS. But the future? That has the power to send me into a quivering wreck. I get moments where I wish I could place her in a little bubble and prevent her from facing any of the potential hurt and sadness that's round the corner. I would happily share my home with her for the rest of our lives but I know that wouldn't be enough for her. She has a zest and power for life, for new experiences. It's those awful glimpses into the future when I abandon my normal positivity and begin only seeing negatives. 

It's in moments like this that you have to take a breath...catch yourself and say that the only thing that counts is right now, this minute, this second. Guarantees and certainties simply don't exist for any family but perhaps those of us with children with SEND know this or feel this more than most. Today is the focus and tomorrow should be viewed with hope. As Aristotle said 'Hope is a waking dream'. Hope is the vessel that will guide us to tomorrow and great things can & will be achieved. As long as hope fires our core, the conversations of the future, the moments of sadness can be vanquished by the joy, love and dream of all that she is and will be capable of. 

Bibi xx

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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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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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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

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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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