Last leg - Come forward if you can!

Here I am with just a month to go.....People (you) have been amazing to me this year. People (you) have gone beyond, come out of the woodwork and we have raised more money than ever before on equipment, therapy, O/S trips and for the first time respite as well. We now have the beautiful Melissa working for us and I trained Shane's sister Tania (our first family member to be able to fully care for Sierra) earlier this year while in Umbria.

We have also had more hospital stays this year and more set backs than ever before. In February we hit rock bottom when Sierra's hip operation did not go well and they had to re-do the op and she came out of hospital in a constant state of seizure activity, just after being hospitalised in January in status and then in September completely out of the blue Sierra got a flu right on the back of recovering from a chest infection and went straight into ICU. Life stood on a knife edge that night and thankfully she pulled through.

All the while we have remained committed that Sierra would get into mainstream school next year and be able to use her computer. Miraculously and through all our efforts she has been accepted at Doncaster Primary; we will hear any day now the confirmation of full funding, she has three aides and she is using her computer.

There is still another month and one last piece of money to be raised to train the school aides in how to use the computer to give Sierra a voice in the classroom.

Thank you all, and come forward if you can help! 

Love

In the 'Burbs

Saturday in the suburbs and it's ground hog day. Sierra has recently come out of ICU and is back at home with little ability to use her mouth to eat and drink effectively. This is the third time this year I have taught her to drink and eat from scratch. Of course the muscle memory kicks back in at some stage but at the moment I can't get through even one meal without several stops and starts and all the rest of the palava!

This has not been the situation in previous years, 2013 just happens to have been the year of re-starting with eating and drinking and I am now close to insane with it all!!!!

On a better note...we went back to Cerebral Palsy school on Friday - first day back of term and first day Sierra was well enough after ICU. She perked up as soon as we arrived! Big time smiles, full-out participation and showing off was at play. 

And on an even better note ... Sierra had her first day of "transition to primary school" on Friday. All the children attending next year at Doncaster Primary will attend every Friday morning for two hours for the rest of the year. The intent is that when they start next year they are at home with the school environment and each other.

In addition, I now have a fantastic girl who will go into the school along with Shane for the first two weeks of next year and train Sierra's 3 aides. Yes, you did read that correctly ... Sierra will have 3 aides working with her next year!!

Progress is slow but we have progress.....Now come on kid and eat!

Getting back up to fight!

Sierra is recovering slowly from the ICU experience. She's been set back a fair way again..... But we are BACK! 

Sierra will be school ready by January. Not sure how we'll get there from here but it shall be.

Home again Jane

Sierra came home from the ward today. Shane and I collaborated well, being the directors of what was happening in the hospital system and pushing to get her home. It's a testament to us both that we can get on the same page at these times. 

Word from the Ward

Here we are almost 10 days later.... If I told you honestly what it was like here you would say what everyone says, "I don't know how you do it?" I know how.... You just do. 

Shane has a sign on the fridge and it says, "You do it when you feel like it and when you don't." I read that everyday when I'm home and it reminds me to take the action!

Being in hospital tonight is like that. I have been away for four days, we have been transferred to the ward from ICU and if we want "good service" we have to build the relationships with this set of doctors and nurses from scratch. 

All I want is to go home, watch DVD's, and relax. However, I know Sierra needs me here. To reassure her. For her to know Mummy is here as well as Daddy (and Nanny) and for me to fight for her and alongside her to get the best possible "service", get well and get out of here.

Reflection

Sierra is still in ICU and I am in Auckland beginning the next piece of work and next engagement. 

How do you reconcile life when both parts are equally important? 

The doctors tell me there is still, "room to move" with her treatment of the chest infection she struggles with and I feel torn apart at leaving her in the hands of doctors and anyone other than her mother (and father).

These are the moments I reflect on.

Loving a life with disability

I sometimes confide in people that I have made Sierra's disability a life-style choice. What I mean by this is I can view this situation as restrictive and bad OR find the things Sierra gives me access to as exciting, and look for the upside. 

It's easier to see travelling O/S for therapy, fundraising and respite as more exciting than sitting in the Royal Children's Hospital on the weekend. However, I can see the opportunity here as well, when I look!

This weekend I have come down with Sierra's flu so I was able to access antibiotics quickly, and panadeine. Shane and I have a room on Floor 2 and Sierra has one-on-one nurse care so I've really had the opportunity to rest and read. Through Dropbox my sister has also given me access to DVD box sets, my favourite way to get better from illness! Friends, colleagues and family are in touch and we are able to laugh and talk. I was able to reconnect with the lovely Mills family who have been there for us so many times!

Sierra's carer will come here with her homework tomorrow and therefore stay longer and allow me not just to teach but also practice yoga. 

These are small things, but they are the good, wholesome things that have one feel nurtured.

In addition I have been able to prepare for the week ahead. There are important opportunities in my life right now and being here has been helpful for catching up on administration and doing the preparation I need to win!