I’m delighted to be on the blog tour today for Our altered life and welcome Charlie to my blog for a a very special guest post!
After a healthy twin pregnancy, Charlene and Mark were shocked to be told that one of their boys had been born with half of his face undeveloped. In seconds, the happy family future they had been planning disintegrated into turmoil and uncertainty.
Laugh out loud funny in places, heart-wrenchingly sad in others, and refreshingly honest at all times, Our Altered Life is Charlene’s wonderful account of how she struggled to forgive herself and bond with a baby she didn’t expect. Follow her transition through grief and anger, challenges and triumphs, loss and acceptance, to love for the life she has now with two children she wouldn’t change for the world
This is a truly wonderful story of hope, love and laughter. Charlie takes you through the family’s story from just before the birth of the twins.
Although sometimes bittersweet, Charlie finds the light in every situation and readily admits there have been dark days. The love Charlie has for her boys shines out from within the pages of our altered life and for me, made it an ‘unputadownable’ read!
I loved Charlie’s brutal honesty and sometimes hilarious recall of events, I think I went through every emotion whilst reading Our altered life, I cried, I laughed and I could relate to a lot of what the family went through.
Like every expectant Mum and Dad, Charlie and Mark were excited about the future, Charlene was” proud to be having twins, blessed and privileged”. After a text book pregnancy at 32 weeks gestation Charlie’s waters broke. The boys were born by emergency cesarean as one of the boys was breech. Harry and Oliver had made their entrance into the world albeit slightly earlier than they were expected but they were here. Being so premature they were whisked off to the special care baby unit.
A couple of hours later, Dr Mona, the consultant explained to Charlene and Mark that…
”one twin (Oliver) was fine, but twin two (Harry) had some problems, I can still see the way Dr Mona drew an imaginary line down the centre of his face with his hand and swept it across to the left side as if I were dreaming. His voice was muffled like he was talking to me under water. I could hear the odd word, dulled by my delayed understanding and the pounding in my ears. At the same time, he was mentioning something about no eye, a small, under -developed ear, no nostril, a short and slanted jaw. He mentioned Goldenhar syndrome and Hemifacial Microsomia – different terms for similar conditions. Associated with his condition are heart defects, spinal problems and brain damage, but it was too early to know how severely Harry had been affected. He’d also been born with only one artery in his umbilical cord instead of two and the implications of this were, again, unknown at that time”
Charlie went through guilt, fear and a rollercoaster of many other emotions that so many parents who have children with SEND go through. ”Did I do something wrong during pregnancy” ”could I have stopped this” ”what if” ”Why us?”
Harry was later also diagnosed with ASD -Autism Spectrum Disorder, this affects his communication skills, social skills and causes rigid, repetitive and obsessive behavior and sensory issues.
Our altered life documents the trials and tribulations along the bumpy path of life within a family who has a child with SEND. It shows first hand the effect it can have on the family, siblings and relationship between the parents. We have an insight into the hurdles that you come up against when looking for a nursery, then a school. Balancing work life and home life.
This is definitely not a story of doom and gloom but a story of achievements, and most importantly how there is always a light at the end of the tunnel, no matter how small.
In Charlie’s words…
”If I have learned anything on this journey, it’s to laugh as often as possible. Yes, there will be days that you’ll cry, but try to find the humor where you can. It makes for better memories to look back on through the tough times”
Our Altered life is inspirational I’d recommend any parent who has a child with extra needs or a disability should have this by their bedside. As a parent of a child with ASD and also a SENCO I know first and second hand how lonely it can be for a Mum and Dad along their journey.
Our Altered life will help parents to realise they are not alone and everything they are feeling is normal. It will also be a great book for professional’s to signpost families to for guidance and reassurance.
I’m going to end this review by quoting a toast that Charlie raised to her Facebook community after a trip to Blackpool, for me, it sums up Our Altered life and made me feel emotional but in a happy way!
”Here’s to Blackpool, to *motes, to rides, to the tram, to my boy laughing his head of, to so many cuddles, to memories! I know everyone thinks I’ve always got my shit together 24/7, but sometimes, doing things like this with a boy who needs structure and routine, I’m scared. Here’s to being brave, to doing it for my boy and with my boy, for the Mum he’s created, the love I have for him and all the Mum’s of unique children who worry that they can’t…until they know they can”
*Harry has a fixation on remotes and calls them motes
I never really noticed people staring at each other before I had a baby with half a face (yes, I’m blunt). The reaction we got in the early days almost made me a recluse. I was hyper sensitive to every glance and whisper. They may not have even been aimed at us but I was convinced that they were. I ‘knew’ that people were talking about my son and the terrible mother who had failed him. Read more about my initial reactions to the news that Harry had been born with Goldenhar Syndrome in the moment that life changed forever.
Over the years I have developed some strategies that make it easier for me to cope with the stares, the sideways nudges, the pointing and the whispering (and even some crying from infants!). I’m not saying I don’t notice them, or that they don’t hurt sometimes but I no longer dread taking my son out of the house. Hopefully, they might help (or simply interest) you too.
Don’t take it personally
Harry is not the sort of child people see every day. He does look different. As do people in wheelchairs, with amputated limbs, with birth marks or injuries. Curiosity is natural. I am not excusing staring here. Some people stare discretely while others will gawp with eyes as big as saucers. It’s hard not to take it personally but I can absolutely guarantee that if those people were to meet your child or loved one, they wouldn’t stare a second time. They are not staring at the person. They are staring at the condition. Their ignorance and curiosity intensifies that moment where their gaze rests for 30 seconds longer than it should and feels like an eternity of pain for you. But the vast majority of people mean no harm. In the same way that cars slow down to rubber neck at a collision on the opposite side of the road. No-one is hoping those passengers have died, it’s the very opposite in fact, but we all have a morbid curiosity to wonder and stare. It’s not your fault but equally it’s not theirs. It is not an attack on your child. It is not a judgment of you as a parent. They simply don’t understand.
This simply has to be one of the most under rated tools of defence that we have. A smile in the direction of a staring pair of eyes will have one of three results.
It may have no effect at all. From experience, this is rare. If I smile at someone (usually a teenager) and they ignore me or simply continue then yes, I want to punch them in the throat. (I said I had developed techniques to cope – not that I was totally immune to the occasional urge for retaliation!) However, more likely is that people will either feel incredibly awkward and look away (result!) or they feel comfortable enough to then approach you. Yes, I know this is terrifying but bear with me…
Be prepared to answer questions
I am pretty much a walking FAQ these days. “What happened to your boys face?” “Where is his eye?” “Will he have a new one?” The questions have changed as Harrys face has evolved but I still have a bank of standard responses and am rarely caught off guard by a random question. Although, the little girl who pulled my sunglasses off at the park to see if I had one or two eyes a few years ago took me my surprise, and did make me laugh. Once you accept that people stare because they don’t understand what they are looking at, you can pre-empt the sort of questions they will have and you can be ready to answer them. The alternative is feeling a surge of adrenalin the minute anyone tries to engage you in conversation and feeling like your mouth is full of cotton wool. I’ve been there and its not healthy for anyone. Take some time to think objectively about the things you would want to know if you saw a child or person like the one you love and get comfortable with answering them.
Control your self-talk
Ok so in the early days my mind went something like “Everyone is looking” “They all think he’s ugly” “They all think you caused his problems and you’re a terrible mum” “They’re laughing at us”.
This self-talk totally overrode any rational internal dialogue and if I didn’t take a shopping list and a pen with me when I went food shopping then the chances are I wouldn’t buy anything we needed because I was physically unable to think clearly. Self-talk is massively powerful. It becomes the reality we create and it can hold you captive or set you free. Again, I’m not saying this is easy but working on the things you say to yourself is absolutely crucial to your resilience and mental health. Now, if I find myself in a situation where lots of eyes are on us – like a recent visit to a huge swimming attraction where I knew there would be lots of curious children – I tell myself “Its natural and fine” “Just smile” “Focus on Harrys happiness” “A few stares will not spoil our day”. Don’t let the things you say to yourself spiral out of control. Even just being aware of your inner dialogue is a great place to start.
This is a tough one and took me a long time but by a mile it’s the strategy that leaves me feeling the most successful. When I see children staring now I will smile back and ask Harry to wave. Or I’ll introduce him. At this point, I usually get all the questions and can use my FAQ responses that I rehearsed at home. Yeay for preparation! Sometimes people scurry away but often they will chat for a little while and leave us a little bit more educated than they found us. Mortified parents who have caught their child staring or pointing and dragged them off by the arm to be reprimanded are my favourite to speak with. I tell them it’s ok and not to worry. I introduce Harry and although the parent clearly wants to crawl up their own arse I know it’s helping their child so I feel that it’s worth a moment of discomfort on their part. Here, the control is mine and let me tell you, it feels so good not to be passive in your own life.
Don’t go looking for it
This one is more proactive than reactive but from experience I know that I used to leave the house expecting people to stare. I think now that I almost eyeballed them first, daring them to stare at me and prove me right. Not healthy.
If I tell you to count white cars on the road then suddenly you’ll see loads. The brain is amazing at honing in on what you need it to. You don’t need the starers but you do fear them and so the same principle works. Focus on having fun yourself. Just don’t go looking for the stares and whispers or I guarantee you’ll find plenty.
Notice the times when you are a starer too (Yes, you do it too!)
Oh the irony! I would hate people staring and yet the minute I saw other children with facial disfigurements or disabilities I was all about the staring. Not because I was judging or rude. I might simply wonder if they’d had any procedures like Harry had, or what device they were wearing and how it helped them. My friends son is in a wheelchair and often she says she catches herself staring with ‘wheel envy’ at a more up to date model of a chair. Like I say, its natural and you never know the motives of people when they are staring.
There will always be people who stare. Some will be naturally curious, others will be wondering what you have been through and it’s a sad fact that some will just be plain rude. You can either spend time worrying and wondering or you can accept that it will happen, be prepared with your strategies and decision to enjoy the day.
It’s always a conscious choice and sometimes it takes practice but if I can do it, anyone can!
All about Charlie
Hi, I’m Charlie, mum to twins Oliver and Harry and I am blogging about life as a parent of a child with special needs at Our Altered Life. I chronicle the highs and lows of a life less ordinary and the challenges and adventures we all face. When I’m not writing or working you will find me drinking gin, eating my own body weight in cheese and laminating stuff (you can take the girl out of teaching but you cant take the teacher out of the girl!)
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Our altered life will be available to buy from 29th September.