What do I fear most

Apologies in advance for this overly personal post.

I was privy to a conversation the other day when a professional female divorcee who has custody of her two young children was chatting to her friends about her fear that she may have something wrong with her and so wanted lots of tests. The friends, all single and childless, ribbed her for being dramatic and that she had simply had a bad cough.

Turning to her, I quietly asked was she actually worried about what would happen to her children if she died. Instantly she acknowledged it was. This worry significantly affected her actions/behaviour both consciously and sub-consciously. She was not a physical risk taker and would never put herself in physical peril knowingly because of her fears about the impact on her children.

How did I know this? Simple. As many people know, I am the parent of a profoundly disabled young daughter who will never be able to live independently and will require 24 hour care for the rest of her life. As parents, we provide this care and oversight because of our love for our daughter. But what happens when we are no longer alive.? This is what mentally separates parents of such children from what I am not embarrassed to describe as parents of “normal” kids.

The loss of parents at any time is traumatic, but once they are through childhood, most parents anticipate that 16+ year old children should be able to deal with life. Most parents of normal kids will never consider the loss of their partner in their everyday life; every parent of special needs kids does, because of the dramatic and massive care burden that would pass to the surviving partner. The thought of the time when both parents are both unable to provide care to their special needs child is terrifying, because they know that their replacement (and there will have to be somebody providing this care and it is usually the State) will not have the same bonds; yet no parent wants that huge responsibility to have to fall the siblings of special needs children because of the impact that it would have on their lives were they to assume the full-time care duties. There is no answer or satisfactory solution to this situation.

Why do I mention any of this? Well, just because its increasingly likely that you will know people in this situation and this may give you a degree of insight (thanks to medical advances, more children with special needs are able to survive that formerly wouldn’t, with the result that there are many more families with such children).

Normal blog service will now resume.

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