Getting Grown-Up

Happy New Year

Every New Years my hubster and I sit out on our balcony after the kids have gone to sleep.  We eat fancy cheeses, oat crackers, pepitoes and plump olives… and my favourite; grilled artichoke hearts.  We toast another year. We talk about how it has been and stubbornly focus on the achievements, congratulating ourselves for what we have managed.  Then we plan the next year together. As the years pass and my body presents more challenges, we’ve been surprised by how much we can still do.  Together.  2014 has been a good year for us as a couple. It’s been good for us as a family.

It’s taken all year, but our minor renovation downstairs is complete. Happy sigh! A good year for finishing things, tying up loose ends.  Getting more organised.  We are starting to feel like grown ups. I turned forty this year; next year, he’ll turn fifty.  Takes a while, getting to this grown-up feeling!  Once upon a time, we used to go to New Year’s Eve parties.  That’s just not feasible anymore, and you know what?  We don’t even miss the sparkle and excitement, the social stress, the late night, the hangover.  Last year we rang in the New Year at 10pm and tucked ourselves up in bed.  It was perfect.

We have a decoration on our tree, it is a hanging, lidded gift box, crammed with tiny notes.  This year, when we were decorating the tree, my son asked me what all the folded pieces of paper inside were. He had never noticed them before.  They are all our plans for all the New Years. Written in tiny script, hopes and goals and aspirations, folded into the smallest possible wad and added to the years before.  I showed him and his interest skipped off elsewhere, the way it does when you are seven and Mum shows you something less magical than you expected. We, however, always look at previous years nostalgically when we add a new one! It’s amazing how many of them have come true.  Is that because we wrote them down? Planned for them?  Is it really that simple?

What are you planning for in 2015?

Next year holds so many unknowns for me.  I am supposed to start IVIG treatment.  That will run for six months. I’ve been accepted into a leadership programme, for people who show promise as a voice for social change.  For me, that means really working on using my voice to promote understanding of invisibile illness and invisible disability in New Zealand, building leadership skills, increasing my network.  It’s an incredibly cool opportunity, but I don’t know yet if the first will preclude me from the latter, I’m waiting for some dates to know for sure. I feel like I am suspending my excitement in case it doesn’t all fall into place.  But, OH!  What if it does?!

What is certain for me about next year is that I will be wife-ing, mothering, writing, and getting involved with life in as many ways as I can.

I’ll be spending a bit of time (as much as I can manage) out in the countryside, where my daughter rides; drinking in the goodness of green paddocks and the sweet smell of horse feed.  I’ll be stroking the warm neck of her wise and good pony and watching my girl follow her bliss, hair flying out behind, grin on her face.  It’s the best soul food on the planet, watching your children do the things they love.

I’ll be wrapping my arms around my little guy as often as I can. I feel that he is moving on up into a new stage and the little boy sweetness of his cuddles is making way for boundless, urgent energy. He’s a big kid now, a purple belt in karate, a story-writing, poison-ball-tramp-champ-justice-leaguer. He’s growing up and I am treasuring the last vestiges of my baby boy.

I’ll be working on some more pro-active health measures.  I want to improve my gut motility somehow, so I am going to work on what I feed it, I’ll be giving my intestines a rest in the very early New Year by starting a liquid diet.  I had a gastrograffin study which showed, when compared with my recent gastric emptying study, that liquid transits through my intestines with much more ease than solid food. So goodbye cake! I’ll be souping it up instead (know any great soup recipes?). I also want to do all that I can for my general mobility and my fitness, so I am going to the rehab centre to work on my exercise program. I’m excited and hopeful about what that might do.

I’ll be here, blogging about my life with dysautonomia, and all the other things besides.  I’ll be connecting with you over on my Chronic-ills of Rach facebook page. I’ll be emailing, advocating, writing and doing the work I have been given to do.  There is so much more of it.   Hang around with me, I’ve just got this feeling that 2015 is going to be a good one!

How do you celebrate New Years?  Can you?  Do you have little rituals too?

Pipe Dreams

Last night I had a strange dream.  You know those dreams that are so vivid you can smell them?  And when you wake up you are sure you’ve really been there?
I dreamt that I had found an abandoned animal.  It wasn’t the prettiest of creatures but my love for it was instant and fierce.  The coat and markings were all mussied up and it’s frame was uneven and lopey.  It was hungry, so I made it some food.  Hot porridge.  I was worried about how small our yard was, because I already knew without question that I was going to give that animal a home.  Our postage stamp lawn is too small for a gangly, moth-eaten creature that needs lots of room to move.  But I rationalised it would take a while to feed it enough food for it to have energy for moving, so it would be okay, for now.  And I made it a nesty place to rest.  I made a mental note to talk to the hubster about building a shelter. And kept offering the porridge.  That beautiful creature rested its heavy head in my arms and looked at me with its big liquid caramel eyes.  I knew that it would be okay.  I knew I had enough love, I was going to protect him, rescue him.

And then I woke up.
My daughter came into my room and I said,
“Guess what I dreamt about last night?”  Her eyebrows lifted.  “I dreamt I found a horse and brought it home”.  Her smile stretched across her morning face.  She hugged herself tight.  
“Ohhhh, Mum.  I wish you would”
“He was piebald” I said.
“I would still love him” she said.
“He was very skinny” I said.
“I would feed him” she said.  Girl after my own heart.

Do you have dreams that you know can’t come true? I do.  I’ve long since said goodbye to my career dreams.  My dreams about how I want to look and how I want my home to look. I’ve given up on dancing. Being an artist. Accepted that I won’t be who I envisaged I’d be. I’m okay with all of that. But I still really wish we could move to the country.  It’s a painful dream because I know it can’t come true.  I have visions of a warm house, all on one level.  With views out to the countryside from the kitchen.  Fruit trees and veggie gardens and a paddock or two.  A stable.  A kennel.  And all that green, as far as the eye can see.


I am stuck here; I need to stay in the catchment for our main hospital.  I don’t have private health insurance, so I need to be near where the public system can help me best.  I have lots of appointments to go to and travelling distance is hard for me, so the closer, the better.  Then there’s schools, and the commute. No, I’m lucky to live so central.  But when I look out my window, the only grass I can see is on the Mountain over the way.  Our own grass ends so close to the house I can’t even see it.  I yearn for fields of green.  I want a view that steps out all the way to the horizon.  I want to see my hubster, deep in concentration in his workshop, building something. Happy. I want to see Zed running around  and laughing with his dog, the dog we don’t have. And Bee, galloping across the paddock on the horse she sees every night when she closes her eyes for sleep.

Instead, I feed my impoverished dreams with intentionless online property searches. I nurture my need for country with weekly treks out to Bee’s riding class.  Drinking in the views, the space, the smell of that air. Feeling bad that it is me and this stupid illness stopping us from having that life.  Wishing I didn’t have to be asleep and pipe-dreaming to nurture the hopes of my heart.

Where would you live if there were no limits? No barriers?  Nothing stopping you?