PARENTS

And just as quickly as it arrives the calmness,control and good health in this family leaves. It's amazing to have a mothers' intuition, to know that something is not quite right even though you haven't actually been told anything.

I couldn't sleep. I tossed. I turned. I eventually moved to the couch not to rouse the sleeping beauty next to me. 

I spoke to a friend in New York, one who also believes strongly in mothers' intuition. We know when something is wrong with our children. Don't ask me to explain. We just do.

I almost missed it as my phone was on mute. Blue light flashing madly. Message. It's the FYD. Her sister is very unwell. It's 1.30 am and my poor daughter is playing nurse, mother, counsellor, sister to her elder sister. She is in control but just needs her mothers reassurance. My heart breaks. I should be there.

The bags are already packed. I was going anyway. But now I count down the hours till dawn, till I can get up and go and help my daughter whose body is still letting her down.

And just as quickly as it started it ends and we once again put it to the back of our mind. Another hurdle jumped. Another obstacle overturned. She is back to perfect health and cheery as ever as we welcome in her birthday.

So her birthday means the husband and I have been parents for twenty years. That's a long time for someone who was never sure she' d be blessed with children! If someone had to do a progress report on us we'd probably get " tries very hard" somewhere in the comments. What a learning curve parenthood is. It's a lifetime learning curves with no guaranteed A grade.

Parents who should get an A grade are those who look after children with rare diseases. Tomorrow is International Rare Diseases day and I salute my parents and others who look after children with these conditions. Yes, any child with any condition needs love and care, but parents of rare disease children often have to deal with lack of medical knowledge on the condition and a lack of appropriate services, often while maintaining their own health status. It's a true challenge.

Have a good week and check out http://www.rarediseasedayaustralia.com.au

Till next time...