Friday, 19 February 2016

Gratitude

Raising a chronically ill child is hard work. It requires the on switch to be constantly clicked as you watch and wait for the next thing to happen.


Hannah is very much our curveball kid. At 5 days old she was diagnosed with a congenital heart condition called Tetralogy of Fallot. She was hospitalised for a great deal of her first year, has had 2 open heart surgeries, 1 closed heart surgery and was fed with a tube for 18 months. 4 years ago chronic eczema suddenly showed up and with that came infection, multiple specialists, medications, hospital stays. In her 7 years of life she has seen more doctors than the rest of us put together. Recently a diagnosis of aspergers added an even greater complexity.


Does that define her? Oh hell no! She is feisty, sassy, strong, funny, bright as a button, a great gymnast, master of funny walks, best bottom wiggler in the world and has a heart the size of Australia. She adores animals, loves shopkins, hates sitting still, wont eat most fruits and never ever ever stops talking. For the most part around treatments and doctors she is a normal little girl who thoroughly relishes her role as painful little sister.


But as her mum I dont get the chance to breathe out often. Life is a daily balancing act and I border on hyper vigilance. When my gut yells at me I have learnt to follow it and quickly.


This week saw my pocket rocket admitted suddenly to hospital for a serious infection. It was scary how quickly it ravaged her body. It was scarier to realize how many doctors are not equipped to manage the care of a child like her. This admission proved to everyone that her complex care needs to properly coordinated with a group of highly specialist doctors experienced with chronic illness. How grateful am I for those who are willing to work hard to fit her jigsaw puzzle together, give her quality of life and attempt to keep her safe and healthy. It is a huge job.

We dont have a great deal of practical family support. When Hannah is admitted to hospital it is usually sudden and always a period of high stress. Usually I am incoherent. Most of the time I have to bolt off and leave the planning up to everyone else. With 2 other children in different schools, 3 animals, a shift worker husband, multiple sporting commitments for the kids and a business it is no easy task. We plan with no idea how long we will be away, sometimes it even requires me to be interstate for surgical treatment and follow up.

This week was stressful. Infections scare the life out of me. They are her number one risk. And that risk is high. Too high. Insanely high. We are staring down the barrel of needing a heart surgery with a child who has constant infection. It is terrifying. So to say I lose my shizz is putting it mildly. Our children's hospital is an hour away and I just picked up and left.


But here is the amazing thing. My community is the best out there. I have assembled this tribe of women, all of whom are insanely busy in their own lives, all of whom are fighting their own battles which are huge and all of whom without a second thought say "dont worry - we've got this for you". Kids were taken in and cared for better than I ever could, meals were cooked, washing was done, hugs were given, phone calls, texts, funny jokes, thoughtful gifts put a smile on her face, food was literally dropped off to me on the way to and from appointments, school drop offs and pick ups. This meant Peter could still go to work and know we everything was taken care of, important because many people forget how scared he gets too.

So now I sit back with overwhelming gratitude and a full heart. I know I ask a lot, and more often than I want to. I know I cant always reciprocate and I know that no matter what they dont care. They have the same end game as i do which is about getting Hannah home safely. Each and every time without fail they rise up and do what is necessary. Over the years I have asked so many times and with no end in sight their support doesnt ever waiver at all. That is what sisterhood means to me and I am proud to be in one of the best.

Daisy was very happy to see her girl back home again!
Not sure there are ever appropriate words, thank you seems irrelevant. One day I will return the favour to a family in the same situation as us. One day I will pay it forward and give that same heart bursting feeling I get daily.

The world is still a good place, it takes moments like ours to fully realise it

xxx Sarah

Wednesday, 10 February 2016

Amelia's patchwork quilt - Bloom & Bliss

Why hello there!

My first blog post for 2016 - I wasn't sure we would get here after every possible computer malfunction has happened in the past 2 months (including the loss of every single thing on my hard drive, cue the hysteria!)

The kids are all somewhat settled into a new school year, although it has been a bumpier ride than expected. After 7 weeks of no routine it was tough to resettle into the day to day especially as all sports kicked back in at exactly the same time. We went from not getting out of pjs to being out of the house every night of the week for different activities. Exhausted is an understatment.

Around the craziness I had the joy of working on Amelia's quilt, her lovely mum Nekesha has been a customer of mine for a while and I was so thrilled to be asked to create her little girl's quilt. Poor Nekesha had to be incredibly patient as time totally got away from me with all the craziness. Hopefully the finished result was worth the wait!

Amelia's quilt started with these 2 cushions, purchased by Nekesha in August last year. They were the first butterflies I had made and I still love them, there really is nothing like a Pam Kitty floral to make you happy.


Nekesha wanted a quilt that was lovely and colourful and worked with the cushions. I had already had the pleasure of working with some charm squares of Bloom & Bliss and had fallen in love with the idea of creating a large quilt with the range, fortunately Nekesha agreed immediately and we were off and running!


In the past few months you may have noticed I am playing with different shapes, this is part of me defining my style. I want to branch out from the traditional square where I can but still play only with simple shapes so that the fabric is always the hero. One style I have had in my head the whole time is a hexagon quilt made using Lori Holt's half hexi ruler and luckily Nekesha was as excited as I was to play with the idea. Of course in true Sarah style I decided to jump in boots and all and make a double bed size on my very first attempt, nothing like me and a deep end! Fortunately though the quilting Gods were on my side and everything went together perfectly. It was so exciting seeing it all come together!

Quilting was a joy too - I just followed the lines! I was pretty grateful for a large machine again though, I cant imagine trying to feed that through a smaller throat.


The most excited part was pulling her out of the dryer and getting her on Hannah's bed for photos. I had already made the matching pillows so there was no waiting, I just went straight to the pretty. Hannah's room didnt have the best light for photos and I wont lie, I was too keen to get everything wrapped and in the post to probably check I had nailed the shots but fortunately as always my lack of photographic ability was not too huge an issue, the quilt still shone.


For the backing I used a vintage sheet I discovered last year, it was such a happy moment. It was still in original packaging and the perfect shade of pink, quilt backs are so hit and miss. I desperately wish someone out there would recognise the need for modern backs in clear colours. It would make a whole generation of quilters so happy!


And of course the cushions. I decided to use my favourite print and then applique Amelia's name on in gold, it turned out so pretty! And of course no piccolo custom order seems complete anymore without an apple pie cushion, this was my gift to Nekesha for waiting longer than I wanted her to. I love making them and am thrilled how many people love ordering them too!


The quilt set is already heading home so now I cross fingers, toes and eyes that it is happily received and there are squeals of delight as each pretty is opened. I am like a nervous mother sometimes!

One last photo for the day, I loved this one I shot of Penny and Birdie just relaxing together, I love my little handmade people, they really do make me smile when I place them in photos :-)

Penny the Supermodel from Blooms & Butterflies Doll Studio and Birdie from Little Peach Handmade

And now I am back to the machine - I promise to not be away so long next time, Renee's set is nearly ready for her photo shoot and Robin's isnt far behind. I cant wait to share those with you all too.

xxx Sarah

 
Blogging tips