It is hard having a child who will never have the life experiences you have had; who will never be the child you dreamt of; who will not allow you to be the mother or father you always saw yourself becoming.
How is it bearable? Many people cope by focussing on the positives; on what they can do for the child; on fighting for their child and others like them. Some just manage to keep their heads above water by separating themselves, in mind or body, from their child – and perhaps, their partner, their family, even from themselves in some way. Focussing on the positives leaves a question of what happens to the negatives? Can they just be ignored? I don’t think so.
People need to grieve for the life they expected and didn’t get; for the relationship with their children they expected and didn’t get; for the relationship with their partner, their parents, people in the street, the world, which they assumed would just happen, and might have happened, if their child had been born differently. It is not enough to sort out the practicalities; who looks after the baby, how to get time off, where the money is coming from, what will happen when I am too old to look after my problem child. What is needed is to weep; to weep for a life which is now quite unlike the one you were brought up with; quite unlike the one you hoped for, quite unlike your secret dream.
And this weeping needs sometimes to be alone. Sometimes you may need to crawl into a quiet corner and bawl with nobody listening. But sometimes it needs to be with someone else. Partners need to weep together; to talk about the hopes they had which have now been dashed; to talk about the terrible attack on their self-esteem, on their beliefs about themselves, on the self they had built up in the years before the child was born. They need to understand the specific disappointments, the image of family life each had been hoping to live up to and now cannot, however hard they try. They need to know what are the particular losses the other feels.
Sometimes, too, this weeping, grieving, spelling out the losses and how they make you feel needs to be with an outsider; someone who is not themselves directly affected, who is not related to the child, who will not, perhaps, be around in twenty years to remind you of how you felt in this time. Someone who doesn’t mind if you are upset, if you want to cry. Someone who can bear your pain, your self-blame, your blame of your partner, your parents, the doctors – without adding to it or minimising it or getting impatient with it. Someone who can allow you to know how you feel without you being so frightened, so horrified at yourself, so ashamed, that you have to immediately take it back – ‘I don’t really think that!’ Someone who knows without being told that ‘you don’t only think that’; that your fantasies are fantasies but your grief and your pain is real.
There is a point to grief. What it does is to sort out your expectations. You need to know what you expected to happen, how you expected life to be, and how to face, accept, work through, the reality that it is not like that, before you can work out new expectations and be comfortable with them. Without grief work your mind is always comparing your present reality with your previous assumptions, based on reality as it was. Your mind is constantly saying NO! to the present, constantly jolted by the differences, constantly having to deal with the pain of what is not there.
Once you have understood and sorted out the feelings which are attached to the realities of your current life, then you can sort out the practicalities. Fighting over practicalities, over who does what, is most likely to be a proxy for fighting over the conflicting and agonising emotions which feel unspeakable, unrecognisable by yourself, let alone by your partner or your mother. Saying no! to anything such as sex, food, love, change, or even to ‘keeping things as they are’, may be fuelled by a need to say NO! to your feelings about your child, about yourself as a parent who has given birth to a child with your child’s problems. While it is hidden, this NO! can undermine your ‘yeses’, making them feel unreal, false, superficial. If it can be brought into the open it can then be faced with the reality that you also want to (and can) say YES! to living with all your children and your partner. It may not go away, but it will take a different place in your world; it will move to one side, leaving space to live, to grow and to love.
This is what my work as a counsellor has shown me.