To know that others feel alone, that they understand that sometimes we can only walk side by side and not together is enough.
Sometimes it has to be.
We feel alone when we can’t share others experiences. When what others know of our experiences is through newspaper headlines, thorough friends who have ‘gone through what you did’, when their experience of grief is limited to the commonplace of a lost pet or those griefs which though un-shared are not particularly unusual.
I don’t fit in, not because I have grown or finished grieving but because there are no support groups for mothers who lose a child whom the medical profession saw as surplus to requirements even before she was born. We will be mourning one year’s loss on the 25th of December, which is for us not just the first year we will be without our baby for Christmas but also the day I miscarried. I have mild cerebral palsy (C.P) and a benign brain tumour. Over the years, the support I have received when we have spoken to friends or the medical profession about having children has been appalling. In fact to call it support has been laughable. Our desire for a family has exposed every ignorant prejudice, every barrier to acceptance that we like to think disabled people have surmounted.
We have been told variously, ‘You won’t be able to have children, will you?’ (strangers on buses) ‘I don’t want grandchildren’ (my mother), ‘it wouldn’t be a good idea with your medication’ (family friends with no medical training) a miscarriage would be better in your case (a cousin) ‘Children are such hard work, your husband would find it such a burden having to look after you both’,
The pain of the miscarriage is as you say a great sorrow, but nothing to that which preceded it, details which most disabled women never reveal to those who might respond hurtfully but also never dare to reveal either to those who have suffered their own loss.
I have nonetheless learnt a tremendous amount from groups such as ‘Carly-Marie’ and magazines like ‘Still Standing’. I call my baby, my baby, I don’t try to deny her existence just because she was a relatively early miscarriage; we lost her a day after we had our first scan and realised something was wrong. I was only a week earlier than the date when my sister had her first scan and the time by which my mother had started planning for her ‘first grandchild’. I am still not speaking to my mother because she will not acknowledge our loss and has even tried to claim that _we_ were the ones who never wanted children!
I say her name, Helena Antonia. She was denied a reality before birth, denied even her right to life, as a doctor refused to believe that I could be a good mother and have health conditions at the same time. Now people try to deny she ever existed and to tell me that ‘there is no reason why I can’t just have a baby’. People who have no idea what it is like to lose a child, people who have no idea of the grief of being told you ‘must’ have an abortion, people who have no idea that the ache for a child, so many years suppressed is compounded by stories i can never share with those I love.
I HAVE a baby. Helena Antonia and we lost her on Christmas Day 2013. I CANNOT and WILL not have another into a country (the U.K.) which demands that I share my responsibilities with a Social Services which is based on financial gain. I cannot and will not have a baby when that baby being less than ‘perfect’ will lead to condemnation of me and abuse in their own future. I cannot and will not have a baby in a world that has denied, derided and sterilised intelligent disabled women and forced many to have abortions or forced adoptions and where disabled parents as a group are a massive proportion of those whose children are taken into care.
Which leaves us pretty isolated until a brave, sincere article bathes our separateness in the shared tears of recognition, salt and sweet together.
There is indeed no gold at the end of the rainbow for us. When I have mentioned the many medical procedures I would need before I could even risk another pregnancy, even supposing that no interference was forthcoming, ‘Would it matter if you died, your husband would still make a wonderful father?’ If there is one thing I would ask people NEVER to say to a disabled mum-to-be or grieving mum it is that oft repeated, ‘But why won’t they let you have a child? ‘You’ve got your husband to help?” As though a disabled person cannot do _anything_ by themselves and would be an absolute failure, left to their own devices.
I want to scream: “I can be a MUM, HE can’t be a MUM! I want to do it myself, can’t you see?”
I am newly bereaved. We will be mourning one year’s loss on the 25th of December, which is for us not just the first year we will be without our baby for Christmas but also the day I miscarried.