Sunday, May 31, 2015

A welcome post

If you are new to this journey, maybe you have a prenatal diagnosis, maybe a 'birth surprise' diagnosis...

10 years into this journey it's hard to know what is the most important information to share with you. I pondered this just yesterday - so many landmarks and milestones - some were really just parenting ones and others uniquely tied to a diagnosis of Down Syndrome. And all the while I know that everyone's journey is unique - your reactions and family - aren't mine. There is no formula. Just as we've learned from our friend's families - each with their own 'culture' and set of norms so too in this case - the environment you provide will help to shape your newborn baby.

There are many different books retelling the journey of parenting a child with Down Syndrome available these days - the reader in me loves them and yet it may be too soon for you. I know that they are what you are more likely to reach for before the therapy manuals such as Gross Motor for Children with Down Syndrome (a classic - and invaluable for those times when you worry that you are not doing enough or helping your baby in the best way). You may find yourself embracing the world of supplements and diets, i know many families who swear by this. It's daunting at the start, I don't think you'll be ready for any of that just yet. You are re-imagining your family, rewriting your identity, recalibrating reality....and so - just a few days into discovery - what is the best response I can give. What resource should I recommend?

It starts with congratulations. Ends with reassurance that you can do this. What about the middle - the heart of the matter? In some ways there are no words that are right. I can reassure you with the joys and normalcy of our lives and as a natural optimist that is easy to do. I see the rainbows and unicorns in parenting a child with special needs but I am also realistic enough to acknowledge that it is hard. Sometimes it's the hardest thing I've ever done. Mostly it's the easiest - loving Hannah, and her brother - the easiest and the best. I can confirm your darkest most irrational fears - cos no this baby doesn't have 3 heads (literally) but figuratively - this baby will change everything. Your fear, your terror are not misplaced but they are ill informed.
 In Venice 2011

In all those  accounts I've read by mothers like me, one of the most common statements is "I wish I knew then what I know now". But that is impossible.

All I can say is 'congratulations. You are going to be fine. Your baby will be fine and well loved. Don't worry, they will belong."

And if you are looking for something to read - try any one of Conny Wenk's books. My favourite is Three Butterflies but there is also one for fathers and another about friendship. They're written in German - and perhaps that's part of their beauty. I can't read them - I look at the myriad of images and I draw my own conclusions.... I can see the truth, the beauty that is part of my past, my present and my future.....

Yes start with that - the emotions - the love, the bond. Try not to worry about tomorrow. The future is unknown for all of us. We have to learn to deal with the reality - not the 'possibles'. Dream big for your child (that's easy). Trust yourself and others - that will come in time. You are having a child, just another child. A child like no other. A child that is yours. A child that will love you. A child that will make you. Your child.

We are there. We want to hold your hand, celebrate with you. Welcome you to the 'community'. When your child cracks his first smile, when she sits up on her own, when he eats solids, when she claps her hands, when he writes his name - these are awesome moments. Moments that are shared by everyone who has worked so hard at playing with your child to help them get there, but mostly, they are celebrations of your child - the child you watch persevere over and over - with a mix of total respect for their spirit while a little sadness seeps through cos it is so hard for them. Believe me, the joy - so outweighs the sadness. Let your child be your guide. Learn who they are. Let them show you who you can be. I think you'll like the results. I know I did.

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