it takes a village or three!
Monday morning we arrive at RCH. Chiara’s body is making some very unusual movements, like electric shocks through her body. She’s frightened and holding onto us tighter than usual. As the morning went on the intensity of the movements increased, and every time her body jolted she became more and more distressed.
Dad was in the city for work, he came straight to Emergency and gave us all the support we needed. He took Grace home, so she could stay with Nana and Par and relax away from the beeping sounds and bright lights of the hospital. Such a relief knowing that Grace was getting all the love, care and attention she needed. Oh darling Grace, we love you so much!
On our travels overseas, we came up with an award ‘Best on Ground’, it’s either given to myself, Mauro, Grace or Chiara that we share at the end of the day. Pretty much Grace and Chiara win it all the time, but funnily enough Grace never gets bored of it, she gets so excited as we announce the winner, cute! It’s not a physical award as such, just an honouring of the person acknowledging their awesomeness!
But lately, we’ve gotta say that Nana & Par have definitely won Best On Ground. Ever since we arrived back form the U.S, they have helped us adjust back into Melbourne life. The fridge was stocked with home-made food, mum was there to help with the unpacking, washing and sorting. Dad kept the Humitech run’s up to date for Mauro, even did one yesterday for us so we could manage the girls post hospital. Amazing. They move things around, adjust plan’s to help wherever possible and for this we are so grateful.
My parents are often my sounding-board, I’m quick to call them when a new health scare for Chiara comes up. My Dad is a logical person, super intelligent and very grounding when it comes to processing information. I’m often swept up in the prognosis, diagnosis and mini drama, so he has the ability to rationalise and remind me to take one step at a time. He reminds me of my strength when I feel depleted, he encourages both Mauro and I equally and loves us all fiercely. We could not do what we are doing without the support of family and friends.
Good news, no seizures were detected from the EEG. However, we did receive a new label ‘Myocolonus’, which is part of Chiara’s rare genetic disorder Polymicrogyria and Microcephaly. Although it can be overwhelming, I am so glad to have received all the answers early on. This is where the RCH and Genetic Department have been phenomenal. We have the answers to why Chiara is doing A, or B.
In the meantime, they are running more DNA genetic testing to find out where in the sequence things went wrong. So we should get some more answers down the track. I guess on the whole, I am reminded of the fragility around Chiara’s condition(s) which are all quite severe.
So naturally, we felt a few set-backs over the past few days..
Through it all felt so supported by our community of friends and family, the messages of support and encouragement help immensely in those moments of despair. My long time friend Penelope, posted a comment which made me smile. She know’s me so well and is the loving Godmother to Chiara:
“don’t google anything ever again!!!!!!!! Ever!!! don’t let prognosis and diagnosis and all these scary words drag you down from the amazing things you have achieved for your beautiful wee lassie! Remember the first time you heard words like this and think of how far you have come since then. Hold tight and like you say the master plan will unfold and it’s all going to be just fine. Completely fine! We send lots of love and hugs and virtual cups of tea and cake ? stay positive and also have a wee blow out if you need it! Love you xx”
So we’ll get back on track soon, right now we are preserving our energy so we can continue to care for Chiara and stay open to Miracles! Why not?