Having talked to many parents of children with additional needs, I recognise that their unique parenting journeys take them way beyond family tenderness and fondness.
It starts and ends with absolute, sacrificial love.
This love may be expressed in years of changing nappies, re-plastering holes in the walls, accepting disapproving glances in public places, or endless meetings with people who question your parenting skills and your capacity to understand what your child needs. This is love that cleans up smearing, gives and gives yet rarely receives a hug or a smile in return (more often a thump or a poke or a screech). This is love which must learn to deal with isolation, disappointment and discrimination; love that stays awake all night for months on end, which waits for hours in hospital; love that gives up a career. This is love which sees not a child wreaking havoc in the home but a hurting, frightened, overwhelmed soul who simply can’t take any more.
This is a love that will not let go and that will not stop fighting, a love that will not stop believing in better and more. It’s a love that hopes against all the odds and is prepared to sacrifice everything.
Such parents often think they are not good enough. They may believe they are inconsistent and weak, and know they are sometimes resentful, angry, hopeless. But that’s only part of the story, and let me say now the guilt they feel is totally undeserved and way out of proportion.
Perhaps you have been exhausted, overwhelmed, frustrated, grieving, angry, or frightened. But as you pour yourself out for your child, you are the crayon writing ‘love’ in huge, crude letters all over every day. I think the Greeks would call it agape1. Agape is most often associated with a perfect romance but it is far more than that. This is love that accepts all faults in a person, and which is only strengthened by those faults. Contained within that definition, I sense that one can feel agape for a person who opposes you, makes demands on you in every way, yet does not make you hate them by their failings because the opposition is in itself something of intense, personal value to you2… interesting, eh? Agape love is ‘an unconditional, unwavering love, which involves feeling so much for someone that you put them before yourself.’3 I think as parents we’ve all experienced loving like this.
1. Eros – passion, emotion, and emotional fulfilment.
Storge – love and appreciation for family; it is what parents feel for their children, and what siblings feel for each other.
Phileos – love in friendship. It is the choice of love.
Agape – the most absolute form of love.
2. William Barclay, http://www.studylight.org/commentaries/dsb.html
