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 I wanted to share it, even if it's somewhat out of date & a slight departure from what I normally focus on **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

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

Brighton ☀️

What a beautiful day! Today we decided to head down to the coast...we are beach mad in this house. If the sun shines then there's no finer place to be...I adore the sound of the waves, the smell of the sea, the light bouncing off the water...I honestly could wax lyrical about it for hours. 

One of my favourite things is the simplicity. There's nothing fancy about it - we can just enjoy walking, collecting stones/shells & being together. As I've got a bit older, & with my experiences over the last few years, I've started to appreciate how beautiful these simple moments truly are. 

We also tried out a Vegan restaurant (http://www.vbites.com) - my husband (a T1 diabetic) is dipping his toe into this world for health reasons, so we thought we'd give it a go. I'll be honest, I wasn't overly enamoured with the idea but it was amazing! The place was beautiful - funky and welcoming. The food was lovely - both our girls lapped it up. We will definitely be going back. 

The entire week has been filled with family time and I feel very grateful for that. We don't often get these opportunities but when we do, we absolutely make the most of them :) 

Bibi xx

Follow my blog on Twitter  @BibiMac3

Easter...

So for some reason, we never seem to get much luck around Easter...someone always seems to fall ill and nothing ever goes entirely to plan. This year my littlest lady came down with a double ear infection...resulting in her needing a hospital trip, antibiotics & a truck load of calpol (can't live without that stuff!!). Thankfully she is truly on the mend & has managed to gobble up plenty of chocolate...as have I.

But with any holiday season, it provokes a tendency to reminisce and I've done my fair share of that today. I've thought about those gorgeous ones who should be here but aren't...it reminded me, as the weather starts to warm up a little, that soon the roses we planted in memory of my lovely mother & father in law will be in bud & then in full bloom. I simply adore 'their' roses...their strong branches envelop my porch; it feels like their arms wrapping around my house & our family. They welcome every visitor and, although I miss them terribly, their presence feels very real every time I see the pink and white of these beautiful flowers. 

I also thought about how far we've come over the last 12 months...my youngest, was just starting to walk this time last year. Now she's running, jumping, chatting...every day feels like a step forward :) My eldest seems to have grown up so much...the school years are flying by in a flash and I'm trying to savour every moment I get with her. Like this evening, we watched 'Inside Out', while she brushed my hair and attempted all sorts of crazy styles! Rare little moments just the two of us are so precious. Looking back reminds me what we've overcome - the triumphs and the lessons. Each and every one is important to me. 

So, from my family to yours - I hope your Easter weekend has been full of fun, chocolate & memories past and new. 

Bibi xx

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