I often open my blogs by explaining that I didn’t cope particularly well with Harrys diagnosis at birth but I have realised that I haven’t really explained what that looked like for me.
On the surface I looked like I had it all together and everyone thought I was coping really well but inside I was imploding.
What did that look like?
I was consumed by guilt and grief both day and night. You could be talking to me and I would watch your lips moving but only hear my own voice as I repeatedly asked “what did you do to your son?” I would struggle to sleep and wake up early and restless in the way that you do when you have a big day ahead and are convinced you have forgotten something. Only my big day was just ‘getting through the day’ and the thing I had forgotten was who I was only weeks before the arrival of my boys. I was drowning in emotion.
You would see me nodding and smiling in all the right places; with the nurses, the pediatrician, the consultants but I felt detached inside, as if one half of my brain couldn’t reach the other half and was grasping frantically to no avail. It was constant and exhausting.
My head was full of questions without answers, accusations without evidence and deafening silence. I know what loss sounds like and it’s a dark hole of nothing.
I had an acute awareness that I needed to step up and be more than the mother I had planned to be and at the same time I was terrified that I wasn’t up to the enormity of the task. I felt that I had already failed my boys this far – what sort of mother would I be moving forwards? I was afraid more often than I was content.
And still I smiled.
I had a crippling fear that I would bond with Oliver who was at the hospital with me but not with Harry who was miles away and as I had time to process what had happened I worried that I simply wouldn’t be able to love a baby that needed me more than anyone else in the world. What would happen then? When would people discover that this mother was a fraud? I simply was not coping with the overload of a capsized life.
I was scared of the wires that were attached to the tiny frail people that I had created and when the time did come for me to pick them up, I was terrified to wash their hair as I held them, imagining them slipping out of my hands like a bar of soap. I held my breath with every touch in the beginning as the voice in my head told me that I might drop the boys whose lives I had already ruined. The internal verbal abuse was relentless.
I can’t remember feeling happy or excited. I don’t remember feeling proud of myself as a woman or looking forward to our future as a family. I felt like a deflated ‘congratulations’ foil balloon that was sinking in the corner of the room under the pressure of air alone.
And still I smiled.
If you know a mother who has experienced a traumatic start to motherhood please don’t always be fooled by a smile.
A friend once told me about her lovely colleague who had almost died in child birth but who she knew would be ok because “she’s such a strong mum”. As true as that might be, even strong mums need the permission to crumble at times and not live up to the idea that everyone else thinks they are superwoman.
All I needed was people to acknowledge it was hard for me at that time. That the cards I had been dealt weren’t what any of us had expected and that it was ok to feel lost. I might have allowed my smile to slip from time to time and that could have prevented a much darker and scarier reality that I created for myself years later. Only therapy and anti-depressants could reach me by then.
Of course, our story has a happy ending. It’s not the ending I dreamt of when that line turned blue on the pregnancy test and life changed forever and I didn’t deal with it in a way I would have liked to. Do I regret that? Yes, sometimes. I feel that I robbed myself of some very precious moments in the early months. Am I embarrassed or ashamed? Absolutely not. I defy anyone to predict how they would cope in a situation like mine. I do wish I could go back in time and talk to the mother I had just become, to shake some sense into her guilt-ridden head and to hug her fiercely to keep the broken pieces from falling apart. (I wrote a letter to the lost mother I once was if you wanted to read it)
But all I can do now is to be as honest as I can and hope that the new mums and their families read my advice and realise they are not alone. They say ‘the truth shall set you free’ and there is no failure in admitting that you are struggling. Save your smiles for when you really feel happy and they will soon become a true reflection of a life you love and not simply a mask.
And now, I smile.
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I am Fiona from India.My youngest daughter is born with Goldenhar Syndrome.She was born with upper eye lid coloboma(with left eye lid coloboma bigger than right),with multiple ear tags around her left ear and also with dermoids on her eyes.She has undergone an eye lid repair surgery at the age of 3 months.Other than these anomalies she was good on her motor development.Later she has been diagonised with autism at the age of 1.5 years and since then she has been undergoing speech and occupational therapy for improvement of her attention and speech.Now she is 3.5 years old and there is not much progress on her speech despite of these 2 years of continuous therapy.Also she lost many of the words she used to say and not repeating the words she has said once.She does not have imitation skills either.She has a repetitive behaviour of pulling the lower part of her ear and sucking her lower lip.She is not too hyperactive. She runs off when she sees open space and sometimes she goes and snatch toys or biscuits from other kids who goes by her side. She is not improving as other autistic kid of her same age who are undergoing the same therapy with her.
What I have read about Goldenhar syndrome is that kid with goldenhar have normal intelligence.But mine is having autism and not having a progress with therapy.
I would like to know what all you have done for the development of your son.Have you done any speech or occupational therapy.If so, for how long?I have not come across someone with Goldenhar as this is a rare congenital disorder.Am eagar to know if there is anything that can be specifically for development of their speech and attention.
Appreciate your response.
Hi Fiona, I would say that, just as with neorotypical children, its massively important both for you and your daughter that you dont compare her to other children. Talking from experience, Harry didnt talk much at all until he got to the age of around 10 and not he chats away in his own way (if often makes no sense to us). I think you will probably see her progress plateau for a while and then she will seem to develop all of a sudden before levelling out again. Its a long and sometimes frustrating journey but she will make progress in her own time and not before. We used laminated symbols to encourage Harry to ask for the things he wanted and we told him the words even though he didnt repeat them for years. Harry has had weekly speech and language therapy at school for years and we try hard to get him to repeat what we say at home when he asks for things. Repetition and patience Im afraid. Try to enjoy the things that she does do and the rest will come.