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Some parents feel that they are failures and that the condition is their fault, others are hurt that the expectations and dreams they had for their child are shattered. If their child's condition is terminal (leading to an early death) then the family will often become totally preoccupied with this. At this time, shock, numbness, and disbelief can often prevent any real information getting through to family members. Indeed, the person making the diagnosis and giving the information may be the target of the families' frustration, anger and bitterness so she/he may not be listened to at all initially. On the other hand, an overload of information at this point could possibly lead to even more confusion. Certainly parents should feel free to ask questions and expect realistic answers from their doctor, nurse, health visitor, support group, or anyone else involved with the family There is the danger that all the emphasis will be on the condition and not the child, and at times, inaccurate or inappropriate information is gathered (eg from the internet). For relevant and accurate information on specific conditions and, if required, support groups, get in touch with: It may seem the end of the world, but many families have proved that it is not, hard though it may be. There are people who can be with you, work with you, support you, when this is needed, even though that cannot take your pain away. From those around you, you will probably gain information on your child's condition, the future prospects, what help is available, what type of things you will need, whether benefits are available, etc. You should not be afraid to ask and to find out who is the best person to answer your queries. You are not alone, and life may not be as bleak as you might think; though you have every right to think this with the news that you may just have been given. Sometimes this period is compared to the sense of loss people feel when someone close to them has died. In a real sense there is a loss, the loss of an old way of living, the loss perhaps of dreams and expectations, and for many, a loss of hope. There are no easy answers, no quick-fit solutions. If families can pull through this traumatic period in their lives, there is a good chance that they can work at the quality of their lives, hard as that may be. Many parents later on will often talk of the positive things that have happened to them, that it is not all doom and gloom.
