Diagnosis Down's

Mia kisses her unborn sister.

Today I heard that a friend of a friend of a friend on the other side of the world is reading my blog.  

She and her husband have just received the diagnosis that their beautiful unborn baby has Down's Syndrome. I hear they are finding strength in our photos and words and are moving forward with the pregnancy. It's hard to begin to describe how I feel about this...other than just a huge sense of responsibility, an enormous amount of love sent to this couple during this time of devastating shock and a deepened urgency to let a wider audience see the realities of Down's Syndrome today.

I think back to our pregnancy, and wonder how we would have felt and reacted had we known for sure that our second baby girl had Down's.  I know many couples who say the ante-natal diagnosis gave them time to get over the shock before meeting and bonding with their baby.  I hold these people in high regard, how strong and firm in the knowledge of their own strength they are.

I hate to think what might have happened had we known.  I might have panicked, wanted that imperfect baby out of me as soon as possible, disgusted by her imperfections.  Perhaps I would have wanted to keep the little life that was moving inside of me and my husband not...what then?  Perhaps we would both have rallied and strengthened ourselves in time.  Who knows...

But I am not, and would never be one to judge any decision that any mother makes.  We cannot understand another's path unless we have walked in their shoes, understood their circumstances and family backgrounds.  The same goes for those who feel they cannot cope with Down's Syndrome when it surprises them on birth day, and choose to offer their child up for adoption.  I say with honesty that it crossed my mind back then, and had it not been for supportive family, friends and community, who knows what fallout we would be suffering now.  A fallout that would last a lifetime.

All I can say, with a smile of pride on my face from where I stand now, is that Down's Syndrome alone is not a reason to terminate a pregnancy or give away a much wanted child.  We must not judge, but support.  We must dispel fear with love and humour.  We must enlighten the ignorant with beautiful examples of our fully rounded children leading happy integrated lives.  

Live, love, laugh, learn, eat, drink, dance, make friends, enjoy nature...what more do any of us want out of life.

But I refuse to provide a sugar-coated Disney version of Down's Syndrome.  There will be worries.  It will be hard work at times.  Some of the waters you cross with be unchartered.   You will wonder at each turn if you have taken the right routes.  Most people will be supportive but some will patronise your child.  Allow yourself time to talk to them all regardless.   

There will be illness, perhaps surgery, but you will find an inner strength to cope, the same way you would cope if your spouse  or any other child became ill.  You will meet amazing parents who have done the same along the way, and you will share a glance that instantly says "We have both broken through the glass ceiling of life, haven't we."
Others won't 'get it', but you will smile and hope they stay by your side regardless.  Your child will excel at some things and really struggle to learn others.  Just ask my husband what I am like if someone throws a ball at me, and he will tell you that we are not all good at everything!
There will be days when the stubborn behaviour makes you want to scream.  But that is just parenthood.  

A (thoughtless) pregnant mature Mum once said to me, with Natty in my arms, "I'm having all the testing because I wouldn't have time for one like that."  Well I guess if you haven't got 'time' for a child like Natty, then you haven't got time for any child.  Full stop. 

But listen - all children are different.  Some are prettier and cleverer, some are whirlwinds and others are shy, some are loners others thrive on attention.  At the end of the day, each child with Down's Syndrome reflects it's family, looks like it's parents and gives back to life what has been put into its upbringing.  A child with Down's Syndrome is more like it's family than other children with Down's Syndrome, although there will be some similarities.

I wish I had known all this when Natty was born.  And this is my simple message to those just starting on this journey.

The message is breaking through....

It is time to take a breath and assess how far Down's Side Up has come, celebrate the great things achieved and focus on the end goal.  I have been marching forward on a crusade to change the way the world perceives Down's Syndrome for just under two months now.  Two short months...

If you count one just one friend without a child with Down's Syndrome telling me she has now 'got it', then I have succeeded.

If you count just one new Mum with a baby with Down's Syndrome feeling uplifted, inspired and 'kept going', then all the late nights writing and networking have been worth it.

If you count one friend writing and telling me that she will not repeat the testing she had in her first pregnancy in any future pregnancies, then I have removed the fear from people's minds.

If one lady whose baby with Down's Syndrome was stillborn can bring herself to read my musings, I am deeply humbled.

If you consider that a link to my blog is going to be included in a book used in GP update training, than we have succeeded in gaining the attention of the medical profession.

If you count one Mum telling me how the midwife told her to 'go home and think about whether she wanted to keep her baby', just two short years ago, I know we have a long way still to go.

If you count just one of Natty's classmates Mums telling me that she watched the video of Natty reading and thinks she reads better than her child,  I have gained respect and belief of others in our children.

If you count the face of a child with Down's Syndrome being used to model clothes and market luxury holidays, then I have demystified that extra chromosome. 

If you count appearing in a national Newspaper, read by 5 million Britons daily, then I have spread the word that Down's Syndrome is beautiful.

If my postman squeezes me in a bear hug and tells me he is proud of me, I know we are loved as a family. 

If you count a stranger telling me of a friend who gave her baby up for adoption, whilst crying tears of gratitude for the work I am doing, then perhaps I can hope to prevent other women finding themselves in such a desperate place.

Down's Syndrome is beautiful.  Down's Syndrome is not to be feared.   Down's Syndrome is to be embraced and included.  Please help me spread my word dear friends xxx