Bed blog

I'm blogging from the safety of my bed this morning. It's 7:02am and I"ve been awake for 75 minutes already. I woke at my usual time of 5:45am. It's funny how your body and brain creates a routine for you even when you don't need it to. I"ve stayed in bed though. I really don't want to get up. The brain just doesn't want to. I'm worn out.

The reason for this is because Georgia, The Man and I spent yesterday at the new Royal Children's Hospital in Melbourne. It was the first time we'd seen it. After 25 years of knowing the old hospital intimately we ventured into the new, fresh, modern, high-tech wonder that is the new hospital. Amazing! We only got to see the ground floor and we're already impressed. It's aesthetically beautiful. Truly.

Despite this, it's still hospital and yesterday we received news that we really didn't want to hear. Georgia is on the waiting list for spinal surgery. She has a scoliosis - a sideways curve of the spine. Quite a severe one actually. It developed rapidly during puberty and continues to develop despite the fact that G has pretty much stopped growing. In June it was at 73 degrees. Yesterday it measured 90 degrees. There's now no more wondering if surgery is an option. It's now a necessity. Even the surgeon doesn't want her to wait past another 6 months. Too much further and we'll be watching heart and lung function.

I'm not scared. G's not scared either. We're not on panic stations at the moment. Currently she's healthy and strong and there is still some pleasing flexibility in her spine which means that the results if surgery will be really good. What we do feel though is a sense of being beaten. We have endured more surgeries in this family than I really want to write about. G has herself had seven. This will be her eighth - and biggest. Getting both legs broken in two different places and held together with Ilizarov frames when she was only 4 is a walk in the park compared to this. A spinal fusion, according to our chiropractor, is one of the biggest things you can do. We've done fusions before. Sarah and Chloe have had them. We walked into them blind, not fully realizing the implications of what we were doing. Of course back then we had no choice either...but we weren't fully informed. This time we are. Sometimes having all this knowledge and understanding isn't such a great thing....it's still just as confusing.

I know we're doing the right thing but that doesn't make us any less confused or scared or unsure. We know what's ahead, but we're doing it anyway. I'd do anything, absolutely anything, to be able to take this from her; for it to be me on that operating table, not her. It's not though. It's her. All I can do is help her understand, to hold her hand once again as she slips into the nowhere place of anesthetic "sleep", to be the reassuring face when she wakes, to support when she's not herself on all the morphine, to bathe and dress when she can't do it for herself, to encourage during physio, to pretend that I'm not scared at all when inside I'm terrified. See, spinal surgery for us hasn't always gone as planned....

But for now, we wait. We do Christmas. We have school holidays and we have fun. We live as though this isn't coming. We live in spite of this. We possibly live more intensely, sucking up every fun moment that is summer. Next summer the surgery will be all but a memory. There'll be changes to make but at least it will be over. For now, we have this summer. Let's make it a good one!

A bit of Bing

I'm glad to say that Christmas shopping is almost finished. I've discovered that for some reason I can't seem to do it on my own lately. If there's no one with me I tend to just aimlessly wander the shops without any stroke of inspiration at all, however if I have someone like Chloe with me (who, by the way, is an awesome and decisive shopper!) I am ok and get things done. I think maybe this is more a reflection of a mind that is simply on overload than anything else. I'll be glad when this year is over.

We also have our Christmas Tree up and decorated - very late this year, but it's done. Our tradition is decorating the tree to the dulcet tones of Bing Crosby singing all sorts of Christmas carols and reciting the story of Small One the donkey. I don't know when this tradition first started, but it's now become our tradition and we love it. The CD starts off with White Christmas and ends with the story of Small One. Funny thing is that my kids have never seen the movie White Christmas so this week I'm on a mission to buy it to add to our collection. You gotta love a bit of Bing at Christmas. Add to that the gorgeous Danny Kaye and you've got just about the best Christmas movie ever! (or so my chilhood memory tells me. I haven't seen it since I was about 10!)

Christmas Day looks as though it's gearing up to be a good one. It seems as though ALL of my brothers and sisters will be there at my sisters house for a Christmas celebration. That means that all seven of us, plus partners, plus kids which should add up to a gathering of about.....30 people. Good times! I'm looking forward to it!

Tomorrow! Tomorrow! I love ya, Tomorrow!

Fridays.

I look forward to Fridays in the same way a five year old looks forward to Christmas. Friday is my day where I don't go to work. Nope! I don't have to get in the car and tackle the Monash Carpark Freeway or St Kilda Rd, or anything. I am not at my usual place of paid employment. I'm a free agent.

Not that Friday is my day to kick back or relax or anything. Far from it. Friday is the day where I schedule appointments and cram as much as I can into the 24 hours that Friday encompasses. Tomorrow won't be any different...however for the first time in a while I will have the house to myself for several hours. Do you have any idea how much I am looking forward to this? Hours to just go crazy with cleaning and tidying and restoring peace and order to the mess.

I've also seriously got to spend some time Christmas shopping. There are only 17 days to go and I have only managed to buy one gift. Just one. I'm kind of starting to freak out a little. I had grandiose plans of making my girls a crochet afghan each for Christmas but there's no way on God's green earth that's going to happen - unless I dedicate every waking moment to crochet....which is impossible. I wish I could though. Anyway, this means that I have to get off my keister and go down to the shops and find things suitable for a 24 year old, a 21 year old, a 20 year old and a 15 year old. Any suggestions?

One day I am going to do what I resolve every year and start my Christmas shopping in July, or by September and the VERY latest. At least then I have money courtesy of Mr Taxman. I resolve every year that I will do it but like all New Years Resolutions it falls by the wayside, along with the resolve to stop swearing, blog on a daily basis and finish all the unfinished quilts lurking in the cupboard.

So, tomorrow being Friday I will resolve to get each of my kids sorted. We're having a simple Christmas this year - clothes and things they need. Surely I can get that done?

Wordless Wednesday - Lunch break

Scenes from my afternoon lunch break in sunny South Melbourne.

Participating in Wordless Wednesday with Faith Hope & a whole lotta love.

Future Kids

Yesterday my family and I went to the annual Victorian SSPA Family Christmas Picnic. Despite windy, cold weather it was a lovely day.

I was astounded at the number of families who were there. So many of them! All of the children were no older than 10 years old. There were a couple of families there with babies under 6 months - all new little ones with a dwarfing condition.

I loved watching the little ones run around and play together. As I watched I thought, "Was I ever that cute?" Honestly, your heart just melts. I watched as new friendships were formed between the children and the parents got to spend time together chatting, catching up and gaining that reassurance and understanding that only a support group such as ours can offer. I spent time with some of the new parents with babies newly diagnosed with achondroplasia. I love listening to their stories...from when they first learned of the condition of their baby, through to acceptance and to where they are today. It's both heart-wrenching and exhilarating. One theme runs true though - that everything turns out ok in the end, that things aren't scary and as bad as they thought and that they are so in love with and proud of their child just the way he/she is. I love answering their questions. I love the hope I see in their eyes as they look around at the group, seeing short statured children running around having a ball, adult people with short stature living fun and fulfilling, purposeful lives and other families just like them who are able to relate to where they're at.

I watched those little ones running around and realised I was looking at the SSPA's future. My hope for them is that they are able to take it further than we have, that they will achieve more than we did, that they will also show the world that we're just regular people in a smaller body.

I wanted to take lots of photos to capture the goodness of yesterday but I didn't. Somehow I knew that these families needed their privacy. For a short while at an SSPA event you're just part of a crowd. You're not different, you're not unusual. You're just part of the group. I wanted to preserve that for them. I know how much I crave anonymity and invisibility when I'm out in public so I wanted to at least give them that respect.

Oh but the cuteness!!!

Pizza night

Last night my brother invited us all over for a pizza night at his place. No, we don't order pizzas in. Lane cooks the pizzas from scratch, from the dough to the toppings. The result is a wonderful smorgasbord of delicious pizzas that are devoured within minutes of coming out of the oven, accompanied by a multitude of salads brought along by the rest of us and washed down with some beautiful wine.

These nights with my family are my favorite times. Our kids all get on really well and enjoy spending time together. We, as siblings, just sit around and talk and laugh. It's great.

Times with my family centers and grounds me again. It's as though I come back to the place where I find myself again. All facades fall away, the public face goes and I am just me; accepted and loved and a part of something good. I don't have to try, there's no effort involved. I just....be.

It's like coming home, even though there's now no longer a family home to come to. The home is the family and wherever the family gathers. When my parents sold the family home I was scared I'd feel homeless, but I don't. Home is wherever we all are.

Sent from my iPhone

Let's Play A-Z

Playing along with Faith Hope & a whole lotta love.

A. Age - 44
B. Bed - Double
C. Chore that you hate - Ironing, closely followed by washing dishes.
D. Dogs - Maya, my 4 year old Cavalier King Charles Spaniel - blenheim. (white and tan)
E. Essential start to your day - Jogging and a cup of tea. (not at the same time)
F. Favorite Colour - green
G. Gold or silver? Silver
H. Height? 117cm
I. Instruments you play - Does the air drum count? Otherwise, none.
J. Job Title - Administration Assistant and general dogsbody
K. Kids - 3 grown ups and one teenager
L. Live - In south east Melbourne - right on the fringe.
M. Mothers name - Sue
N. Nicknames - Leis' and Prowdy
O. Overnight Hospital Stays - Teeth pulled when I was about 10, several nights following all of my 4 c-sections.
P. Pet peeves - people without a permit parking in disabled access parking OR delivery people and tradies parking there.
Q. Quote from a movie: "I hear them! I hear them Daddy I do!" (from Prancer)
R. Right or Left Handed? Right
S. Siblings - two brothers and four sisters. (all younger)
T. Time you wake up? 5:45am when the alarm goes off.
U. Underwear - whatever's comfortable.
V. Vegetable you hate - peas
W. What makes you run late? Traffic. I leave on time but the Monash carpark Freeway is a shocker.
X. X-rays you've had - I recently had a full spinal series done for my chiropractor, other than that, one on my arm when I was a teen and a full body set done when I was a baby and again when I was six.
Y. Yummy food that you make - Chilli concarne, Tomato and lentil soup, Apricot Coconut Slice
Z. Zoo animal - I love the giraffe. Such beautiful eyes.