My daughter Eva has Rett Syndrome; a rare neurological disorder that in her case, left her locked in a body that would not work for her from the age of 9 months. I went from being a photographer to being a mum to being a rudimentary therapist, advocate and ranter. This blog is here to share ideas, thoughts, therapies, recipes, advice and sometimes have a rant. or two.


Tuesday, December 23, 2014

you are too blessed to be stressed.

This is a phrase on a friend's facebook page and I think of it often.  It brings me back to a position of feeling grateful instead of feeling entitled.  And it's been a rough few weeks around the world - the siege in Sydney, hundreds of children murdered in Pakistan, more children murdered in North Qld.. it's a harrowing, emotional time.  But being stressed about it does nothing and real action takes time and effort.  In a world away, my world here with Eva my little dramas and stresses seem frivolous but it all adds up.  Being kind and compassionate and taking time and effort in my own life can ripple out to the bigger world little by little...


So I'm sitting writing this in my kitchen, berry muffins baking in the oven (vegan - recipe below), stardust radio playing beautiful old hits and having a quiet little weep, for my own little drama.  It often gets me this time of year... we go to parties, we catch up with friends we haven't seen for ages and the chasm that is Eva's social life that I manage to teeter across throughout the year widens and swallows me up.

I suddenly see her through other's eyes.  Through the eyes of children who ignore her or just have no idea how to approach her, of adults who don't know what to say or how to say it.  Of the stares, the sad eyes, the ignorance.  

I so desperately just want her to be seen, to be included and to be adored the way we adore her, to be talked to like we talk to her, to have her sense of humour shine the way we see it shine.  I know all parents want this, I know I'm not alone here.  But with a child who can't walk up and spin a line or tell a joke or twirl a whirl, it's desperately lonely in the field of social life.  I sometimes think it's totally up to me to approach people and teach them how to communicate with Eva.  But you know in the last 7 years it's been a very rare occurrence that someone has asked me how to communicate with Eva, even to say hello or how are you.  And yet it's really not that hard!  But it does take one major thing - commitment.  In fact for anyone reading this who doesn't know, here's my personal how-to on approaching Eva or even any child who is in a wheelchair and doesn't appear to communicate verbally:

1.  Get on her level
2. Talk at a normal pace and tone with age-appropriate language.
3. Say hello
4. Wait for a response - it might be the quickest glance, a small smile, a leg kick or nothing.

5. If you don't get one, don't give up.  Remember this is not about you. At this very moment she might have a headache, a pain in the tummy or be desperate to go to the toilet but hasn't had anyone ask her if she needs to go so she's sitting there in total agony! She might have an itchy bite on her neck but she can't ask to have it scratched or reach around and do it herself. There might be a million reasons why you're not getting her total attention to begin with and it almost certainly isn't about you.
It is about giving her a chance to have a conversation.  Maybe her carer or parent will step in here and help you learn how to talk to her or..

6. Ask her parent/carer how she communicates and ask to have access to that book/ipad/notebook or whatever.
7. Then ask a fun question - examples-  Are you looking forward to Christmas?  Do you like getting presents?  Do you think Santa knows what you want?  Do you like chocolate?  Have you got any cats or dogs?  I mean really the list here is pretty endless - anything that shows you are not only willing to take the time to ask but will stick around to get a reply.
8. Don't rush
9. Don't start another conversation whilst waiting for a reply 
10.  Refuse to allow yourself to be interrupted by others.  This is quite possibly the only time that this little person is being spoken to respectfully by an adult - honour it.
11.  If you don't get an answer tell them a little bit about what your response to the question would be.  Let them see you're up for a chat.
12. Simmer... let the conversation wallow a little, see what's happening.  Maybe you two can talk more or maybe you can leave it at that and know that you've given it a red-hot go.
13.  But if this all seems too hard then don't even bother to start because you'll be breaking two hearts if you can't commit: hers mostly, but mine too.

And if you have children - talk to them honestly, openly and bravely about what it might be like to not have a voice, to not have the ability to run around and laugh and play with the others and how taking time to talk and include isn't about being a better person it's just about being a real person.  A real loving person.  A real loving person committed to loving and learning about people from all walks of life.

I live in hope.  And yes, I'm too blessed to be stressed.


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Mixed berry muffins - vegan : dairy and wheat and egg free - makes approx 12.

1 1/2 cups spelt flour
2/3 cup organic sugar
1 tsp baking soda
1 tsp baking powder
1/2 tsp salt

1 cup soy milk
1 tsp apple cider vinegar / plain vinegar
1 tsp vanilla
1/3 cup oil

1 ripe banana
1/2 - 2/3 cup mixed berries

Whisk together the milk and vinegar and set aside.  Whisk together all the dry ingredients and create a well in the middle.  Mash the banana and add it to the soy milk with the vanilla, oil and berries.  Mix through.  Add to the dry ingredients and mix thoroughly.

Spoon into muffin tins and bake at 180 degrees celsius for about 20 minutes or until cooked through.

Enjoy!