If I could turn back time – What would I tell myself?

If I could time-travel, what would I go back and tell myself the day you were born, and the days, weeks, and months that followed…….

“You were expecting a ‘normal’ child.  Your world has shattered into a million pieces.  You have lost something you never had, but that you were preparing for, for the past nine months.  You think your life as you know it is over, but I am here to tell you it has only just begun. 

Listen very carefully when I tell you these five very important things.

Number One.  You will love this child.  This is a love that has no bounds.  A love that can and will move mountains, will stop you in your tracks, make you breathless, will make you stronger, prouder and braver than you can ever imagine.  This is a love that is borne out of who your child is, not in spite of.  It is a primal, elemental love that even your closest will not compute.

Number Two.  The future is your enemy, and the present is your friend.  Do not think about all the things that might be difficult in the future, all the battles, all the differences, all the challenges.  No one, especially not the professionals, knows what the future holds.  No benefit can be gained from suffering over the what-ifs, and the what-ifs are usually much worse in theory than in reality.  Enjoy life in the now, stop and breath in the joy and wonder; you won’t be able to get those times back.

Number Three.  Other people are ignorant, thoughtless, and thoroughly tactless.  They are also well-meaning, kind, compassionate and unknowingly prejudiced.  They mean no harm.  They want to alleviate your pain, give you optimism, and contribute to lessening the burden they see you carrying.  Their input will usually involve personal accounts of their cousin/neighbour/best friend’s brother, which they will naively assume hold relevance and add value.  They won’t, but you won’t tell them that; rather, you’ll smile sweetly and change the subject. 

Number Four.  For every friend you lose (and there will be scores), there will be a new friend who will change your world.  Some may be travelling a similar path, some may cross your path for other reasons.  You will encounter a whole new team of superheros: your child’s advocates – teachers, therapists, care workers.  You will entrust these amazing individuals with your child’s life, and you will cry and celebrate with them.  They will show you a whole new species of supreme humanity.

Number Five.  You will overhaul your expectations of life and parenthood.   You will recode the hard-wiring of what you have come to know as happiness, pain and love.  The joys, woes, challenges, celebrations, will be the same as parenting a regular child.  But with greater extremities either way.  And please believe me when I tell you that the intensity and elation of the up-sides will eclipse the down-sides.  In this you are truly lucky.  In a life where nothing is assumed or taken for granted, you will treasure and savour Every. Single. Moment.

So please don’t be sad.  Don’t miss out on the first few precious days, weeks and months, because of misplaced sadness and grief.  Avert those feelings of loss and exchange them for eager anticipation of what is to come.  Know that you will be a good parent, a great parent, and be kind to your husband.  He is travelling his own same but different path, and you are a team.  The BEST team.  And you are the luckiest parents in the world.”


A Friend in Need is a Friend Indeed!

‘Good friends show their love in times of trouble, not just in times of happiness’ – Euripides


Mums of disabled kids: We’ve all got ‘that friend’, the one that would do anything for you and your child.

The one that always knows what to say, when to call, when you need an extra-big cuddle or extra-large glass of wine. Continue reading A Friend in Need is a Friend Indeed!

If at first you don’t succeed… Our own personal battles with the authorities

We have just been victorious in our third giant battle against the powers-that-be, and I wanted to share our experience so that it might help empower others that might need some help or encouragement when battling with their own challenges. Continue reading If at first you don’t succeed… Our own personal battles with the authorities

Making Friends through our Children’s Conditions

making friends

Once upon a time we were drifting through our happy, ‘typical’ lives, all spread out across the country, never for our paths to become intertwined.

Then, along came Mother Nature with a pregnancy, and into that pregnancy she kindly dished out an extra pair of chromosomes. Our babies were born, and therein began our journey into our special world of friendship and discovery. Continue reading Making Friends through our Children’s Conditions