Stop! Hammock time!

All work and no play makes Leisa a dull girl...or something like that.

I'm my mother's daughter. I like to get all the things done! I have a tendency to think of all the things that need to be done and then fill up my days doing all those things until I come to the end of my holidays and think, "Good Lord I'm exhausted! I need a holiday to get over my holiday!"

As I lay here in the hammock I can hear my mind ticking over...

I should really weed that back section next to the carport.

That kale needs harvesting.

I should really turn that veggie patch over...what can I plant in the middle of summer?

That front garden looks like a jungle! Tomorrow I'll get out there and get into it!

I should really go through my wardrobe and cull some of my clothes!

And on and on and on it goes....

I've done things today. I've been for a run, tidied up some of the house, done two loads of washing, made my bed and braved Kmart to buy a little paddle pool to cool off in. But now I've stopped, lay in the hammock and decided I'm going to just lay here and read a couple of chapters of A Clash of Kings. After that I may contemplate my navel and come up with a plan for world peace.

In any case...I need to remember just to stop sometimes.

How about you?

Holiday projects

I'm at the point in my holidays where I don't know what day it is. In other words, I have reached nirvana, the state of eternal bliss. Time is stretched out before me like an endless sea - well, that's what it feels like to me and I dare you to tell me otherwise! Clothes are selected for comfort instead of style so I spend a lot of time in comfy shorts and well-worn tshirts. Thongs (flip-flops for all you readers from the northern hemisphere!) are optional.

So, I have set myself some goals. First, not pictured, is to finish Chloe's quilt. I've set up my sewing machine in a little corner nook of my room and will determine to finish it before work starts again!

Second, I'll tackle that pile of books! According to Goodreads I only finished three books this year! Shameful! I'm almost halfway through A Clash of Kings so hopefully I'll knock that over in between other projects and when I take a rest in the hammock.

Third I'd like to get that crochet done for a friend!

Fourthly, I'd like to make myself a blanket in red with grey accents. Red is the colour of the moment!

And in between all this I plan to smash my 12km running goal! 

It's going to be a wonderful summer!

The first five

I find myself drawn to the first five photos in my baby album. I look at them almost hungrily...which kind of sounds strange...but I do. They mean a lot to me. They are labelled, 2 weeks, 1 month, 2 months, 3 months, 4 months. Then it skips to 7 months. I wonder about five and six. I assume those were the months the penny was beginning to drop because my parents received my diagnosis when I was six months old. Three of the five of them I am with my mother. I look at her young face and I know she had no idea. I look at my little self and I can see the features as plain as day; even in the one where I'm only two weeks old, hands clasped together, eyes shut tight. I can see it easily. 

But these pictures mean a lot to me because ignorance is bliss - not that knowing really changed anything. There's some kind of innocence about them that I can't quite explain - as though, for five short months, I didn't have achondroplasia at all. 

And for some reason, I look at those five photos and I think, "That's when I didn't have achondroplasia at all."

Where we experienced the true meaning of Christmas

I realised just the other day that this has been the first year since 2005 where I have walked through December 18 without a thought about the day or the date. No PTSD, no flashbacks, no heart thumping in my chest. Having started this post though I have to admit to feeling some anxiety as I remember but it doesn't hold the trauma it once did and for that I am grateful.

December 2005 was the time our Chloe had an anterior fusion of a lumbar kyphosis. In laymans terms that means that she had surgery on her back where an outward curve was slightly straightened and stabilised with titanium rods and screws. Yes, it's as big as it sounds. After a week of being in hospital they encased her torso in a plaster cast and sent her home for Christmas.

Those days she was home were not fun for her. I won't write all of what happened but by December 18 I was concerned enough to bundle her into the car and drive like a madwoman up the Monash to the Royal Children's Hospital. The staff took one look at my pale, grey girl and rushed her into Emergency.

The cracking of plaster to reveal a horribly emaciated Chloe, the strangled, "I can't!" when encouraged to take a deep breath, the colour of the carbon-dioxide laden blood they took from her, the hiss of the bi-pap as they forced oxygen into her, the X-rays revealing a collapsed left lung filled with fluid and squashing her right lung which was displacing her trachea, the muttering of the nurse, "how is this kid still breathing?" Tubes being inserted here, there, everywhere. This mother holding her daughters hand repeating, "You can do anything! You can do anything!" like a mantra. 

These are the memories I have but choose not to write in detail because they still haunt me to this day if I dwell on them for too long. One thing about Emergency they don't tell you. The mother is invisible. The staff only have eyes and ears for the patient. Everyone else doesn't exist. For that I am so incredibly grateful...but as a mother, it's also incredibly hard.

I've never been so afraid in all my life...nor have I been so afraid since. Eventually things stabilised and we knew she was out of the woods when someone blew up a latex glove and drew a face on it. I knew she was going to be okay when her doctor looked at me in the face and assured me that she wasn't going to die.

Our girl was taken to the ICU where they drained a litre and a half of milky, pink fluid off her chest. Her breathing became steady and deep and for the first time in days she was able to rest. 

We weren't allowed to stay with her that night. There are no parents sleeping by bedsides in the ICU. Beautiful friends who lived nearby gave me a bed for the night but as soon as first light came I was out the door and back to the hospital.

As I entered ICU I was greeted by my girl. My Chloe. She was pink. I hugged her and she was deliciously warm. She looked at me and said, "Mum, I'm so glad this happened to me because if it had've happened to anyone else I loved I would've been so much more scared."

My Chloe. That whole statement just sums her up completely. We are so blessed by her presence on this earth.

Yes, we spent Christmas on the ward at the Royal Children's Hospital that year. How blessed we were! We were so touched by the hundreds of volunteers who gave up their own Christmas Day to be a blessing to families spending Christmas on the wards. Volunteers who handed out presents so generously donated, volunteers who lovingly prepared Christmas dinner for families and friends. Carol singers, celebrities, entertainers all making the rounds to spread some Christmas cheer.

Family members gave up part of their day to spend it with us on the ward. Our little room was filled with Christmas cheer as presents were spread around a miniature Christmas tree which slowly became buried. 

Some family members who were unable to visit gave up their time to serve others that day. My sister in law went out and helped out at a soup kitchen, serving Christmas dinner to those in need.

It wasn't the Christmas any of us ever expected, but it was a truly happy one and we felt so incredibly blessed. We were all acutely aware of the fact that we had dodged a serious bullet that year and were so grateful for everything that happened. Life is so precious...and we simply celebrated the gift that is life.

Chloe was released from hospital on January 7, 2006. She came home pink and well and wonderful. We captured her homecoming in a photograph that still adorns our fridge to this day.

I think their faces say it all.

Chloe is the one in purple.

*note: Chloe had experienced a complication known as Chylothorax. As the surgery had involved accessing the anterior side of the spine, the incision was made through the chest wall. Sometimes the thoracic duct is accidentally severed during this type of surgery causing lymphatic fluid or chyle to leak into the pleural cavity surrounding the lungs and heart. This is what happened to Chloe. After the fluid was drained & the tear allowed to heal by having a strict no-fat diet, she made a full recovery. * 

In which she wishes she could hibernate

Image source

This Mama Bear is tired. So incredibly tired. I wish I was a real bear, living in Canada or wherever bears have lovely, long winter naps and sleep through Christmas.

Not that I hate Christmas. Far from it! If I could take the whole of December and January off to fully bask in the goodness of the season I would; but I can't. And everything and everybody has their final break ups, Christmas parties, concerts, gatherings and get togethers over the last week of November right up until Christmas Eve so, in the words of Truvy (Dolly Parton) from Steel Magnolias, "I'm busier than a one armed paper hanger!" 

And I can say that because I'm "in the club" - kind of!

This Mama Bear also decided to hand make a lot of her Christmas presents this year too....so I'm pulling a lot of late nighters. Silly me. I have a quilt to get finished and wrapped by Christmas Eve....and I have a sinking feeling that it's just not going to happen. Luckily there's a Plan B. I found it yesterday.

I need to remember that if I'm going to go all out in the Make & Bake Christmas stakes I need to start getting my act together in February so that I can have everything done (hopefully) by the beginning of December. As it stands now I have an entire quilt to put together and I still have squares to cut - after this I will have cut 588 squares. Yes, you read it right - and that's not counting the 20+ squares I totally stuffed up!

Because family members and gift recipients actually read this blog I can't post pictures of the hand made goodness so you'll have to wait till after Christmas Day!

The desire to hibernate is also due to the fact that there are things that have happened and are happening that have made life seem just way too big. There are times where I feel, "I'm too old for this sh*t!" whilst at the same time thinking, "I'm not grown up enough for this sh*t!"

After my last foray into the world of radio broadcasting I spent a week feeling incredibly angry that after centuries of "my people" being given away as GIFTS, seen as oddities, sources of amusement to kings and queens and commoners and guinea pigs for doctors there are some pockets of society who still hold to this idea and there will be those of similar stature to myself who would willingly offer themselves up to be part of it. For a while I agonised how to try and stop this and I found myself getting more and more stressed by it.

Then I let it go. I can't stop it, nor is it my job to do so. For some reason the care blew away on the wind as one would blow dandelion seeds. I am not them. I am me and what they choose to do with their own bodies and physicality has no bearing on me. I will continue to live just as I have always done. I will grab each opportunity and run with it. I will get out there and be part of the community as much as possible and trust that as I do so people are being educated in a positive way. There are times where this is rewarded. Yesterday was one of those days where I had a most lovely conversation with a father and his adorable four year old son as we walked across the road to the bank together. Their willingness to ask questions made me respond with an open heart and after the encounter my face couldn't stop smiling.

I need to keep remembering times like those. All the time.

Two more days. Two more days until I have three weeks of unfettered freedom. Well...that's the way I'm looking at it anyway.

One for all

J's housemate is praying for us both to be united under the one roof. This man is Muslim. For some reason this has touched my heart. A lot. 

My religious upbringing drew definite lines in the sand between who was right and who was wrong; who worshipped in spirit and in truth and who did not; who worshipped false gods and who worshipped the one true God; who was going to hell and who was not. 

Since leaving organised, corporate religion my heart has been opened to a much better way. I truly know now that God is love and wherever love resides there he is also. Love doesn't follow a formula or a schedule, love doesn't have set rules and right or wrongs. Love does not differentiate between culture or tradition. Love does not expect you to live up to a certain standard before it is given. 

This man doesn't even know us very well. He doesn't know me at all...and yet he prays and shows love. I am simply blown away by his kindness.

I cannot express the freedom I feel. It is like I have been caged all these years. When I gave myself freedom I know I stayed close to the cage, needing it's security whilst I found my feet. I'm finding my feet now and I'm beginning to explore places much further away now. They're not scary, as I thought they would be. They contain hidden nuggets of truth that assure me that God is still in his heaven loving me wherever I'm at.

I am free.