Life is travelled once

'Life is travelled once
Today's moments become tomorrow's memories
Cherish each moment, good or bad
Because the gift of life is life itself'

Author unknown

These words helped me today.

What my journey has taught me so far

I was asked recently by a grandmother whose new grandchild was diagnosed with a chromosomal disorder, what advice I could give her and her family. She was asking me because my 14 year old Stephen has a rare chromosomal disorder. This got me thinking….as I look back now on my journey of being a parent of a child with a disability and if I could have talked to myself all those years ago, what would I have said?

Here is what came into my head:

• You are doing a great job – you can do it.
• Take one day at a time.
• Break milestones into mini-milestones, celebrate all achievements.
• Everyday find something you are grateful for, some days it will be the blue of the sky or the green of the grass.
• Take timeout, take care of yourself – this is a marathon, not a sprint.
• Surround yourself with people who give you positive energy and limit contact with those with negative 
• Connect with others in the same position.
• Connect with others who are outside the ‘disability’ world.
• Allow yourself sit on the ‘pity pot’ (feeling sorry for yourself) occasionally but don’t forget to get off it ( I sometimes get stuck on it).
• Take time with your partner.
• Take time with your other children.
• Take time with yourself.
• Celebrate difference.
• Laugh, live and love!