A family that plays together…

Lots happening in our world right now, getting ready for the trip to the USA for Chiara’s treatment, trying to keep up with the therapies and all the other stuff that comes along with being a Muma!

We had a long day at the hospital on Monday, I wasn’t as prepared,  I thought it was just going to be a quick check-up. Alas there was some concern around Chiara’s growth. So off to the lab to get more tests, so the hour appointment turned into many hours. I love this photo below for so many reasons, mainly  because we are all together on this journey. Waiting in waiting rooms has been common place for the past two years, moving from one department to another.  I find these days most tiring, it throws the routine out the window. Organisation is the key, making sure all food and bottles are packed to last the day, all relevant paperwork for the apt etc. On these days I try and get dinner organised early, it’s a bonus to arrive home after a long day at the hospital to a healthy nourishing meal.  A nice reminder to end the day with some Yoga Nidra too ;-).  I have this inner ritual whenever we leave the hospital, I take a moment to give thanks that we can leave, that all four of us are together. We walk past the emergency department and I give thanks that we are not in there. I am finding blessings these days in the oddest of places, all thanks to this little angel Chiara (& Grace).

The other night we went for a long night walk with the girls (they usually fall asleep in the pram and baby bjorn) it’s where we do a lot of our debriefing about Chiara and Grace, special needs, parenting, therapies, life in general, our grand plans, our dreams and all the stuff in between. One question that Maur floated stood out,  “Nat, when do you think the time will come, where we don’t feel exhausted?”. I couldn’t answer in that moment and I still can’t today! I guess if anything, it’s a reminder of the importance of self-care. Physically it is demanding on us let alone the emotional concern for her overall health and wellbeing. We don’t know if she will ever gain physical independence, we don’t know if she will ever utter a word, and we don’t know the level of brain function she will acquire. With that said though, we do see some positive changes and understand it will be a slower journey compared to her older sister Grace. Still so many unknowns about our little Chiara, but we do know though, that she is surrounded by love, we do know that we are tying our best and we do know that (along with Grace) she is our gift.

Categories: wisdom

3 Comments »

  1. Wow that is huge, but if i know anything at the moment in the constant caring for my almost 93 year old mum and that is, trust in yourselves and each other. You will know when you reach that time. You will know when faced with all the information and the channels of love, help and support, that what ever happens, you will feel it in your gut the right pathway to take. As I say often , there is no blueprint for this, no prescription, no book written, because we are writing it by doing what we are doing, inter-acting with an individual, a human being like no other. So, keep faith in yourselves and each other, utilise all your supports and know at some point you will know. MUCH LOVE, JANET.XXXXXXX 🙂 🙂 🙂 🙂

  2. You, Mauro and Grace are doing everything in your power for Chiara, and self care is so important for you all! Sending lots of love and positive engery💕💕💕💕
    Beautiful photo!

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