A Mother Writes

Life is often full of highs and lows, and , broken dreams can be hard to come to terms with. Perhaps one of the hardest is to be told that your longed-for child has something wrong in their system. At best they may live a fairly normal life with regular check-ups and medication when required to alleviate the symptoms where this is possible. At worst, the diagnosis may be shattering and we learn that our child faces grave disability or even an early death.

A friend(!) shocked me recently by asking if I ever resented the burden our child is on the family. I really couldn’t believe my ears ! I have never , for one moment, considered myself ‘burdened’ and can honestly say that we, as a family, have learnt more about life than ever we would otherwise have done. I consider myself hugely fortunate to have her innocent acceptance of her many problems. She has taught me patience, fortitude, compassion, how to cope and how to care with infinite love –which is as it should be. A whole new world is opened up for us and if the hurt and sorrow is there, so too is the laughter and joy in the smallest achievement. We are truly blessed in these children.

The impact of a disabled child does, of course, impinge on the siblings, as well as parents, grandparents and friends. Inevitably there have to be adjustments and the distribution of care to others can be seen as being cut back because of the time necessarily spent with the one who needs it most. However I haven’t met a family yet which doesn’t have arguments , worries, cares and concerns whether or not there is a disabled child there.

It doesn’t do any good to brood on the difficulties---just get on with whatever you can for that day and tomorrow will be taken care of in the same fashion. That’s how we are anyway. Each family maybe learns to deal with things in their own fashion. How could there be any set rules where the scenarios are so diverse. The illness themselves are vastly different and the Social Services often have to be pushed to respond to help but help is there when it is most required. Ask!!

It’s funny how little things can seem so much more important and special both for the child and the carer. Plan for a treat for yourself too. To one person that might mean an hour just to be alone to sit and cuddle their child or else to go out for a cup of tea or have some fresh air walking the dog. Just know- in your heart of hearts -that you are doing the best you possibly can and live to your ideals as you would want someone to do for you if the situation was reversed. That must surely mean we can’t go wrong. There is no fathomable depth to the love that is required and is given in these situations –there will always be more love seeping back into the well to be drawn on when needed.

I suppose it’s possible to paint a black, ugly picture and moan about all the bad things we are faced with but what’s the point of that? If we accept the reality of life there can still be fun along the way. Whatever it is you are faced with I know you’ll cope if you have the courage just to get on with it.