There is a little effervescent person whom I owe so much gratitude to, the most adoring little soul who has been by our side every step of the way, since Chiara’s whirlwind-style entrance to the world. GRACE, beautiful Grace I cannot begin to thank you for your worldly wisdom and bright spark that has brought so much comfort to this lil’ tribe of ours. Against her comprehension or complete awareness, Grace has been making a silent unseen sacrifice for her little sister over the past 20 months. Grace has been with us, as we tried to navigate our way through endless unknowns and copious amounts of medical information. We were running on very little sleep, so had been digging into our reserves to get through the days. At times we didn’t have the kind of ‘zen’ patience that our beautiful Grace deserved. How quickly our children can highlight our flaws in an instant, but equally enrich and grow our abilities to transform. So often we feel torn between focusing on Chiara who needs a lot of assistance, and to Grace. Chiara relies on us to act as her body, as she is unable to roll, sit or stand independently, so naturally we need to assist her little 18 month old body to move where she needs to go. So there is still so much ‘hands on’ work with little Chiara. As best we could, we have tried to explain to Grace about Chiara’s additional needs. I’m sure she understands, after all she is ahead of her years. But there are moments when I feel so struck with emotion, when I stop and notice Grace playing quietly on her own, while Mauro and I are attending to Chiara’s extensive daily needs. Our family time has been replaced with therapies, specialists, tests, research and a lot more. We wished we could have been more patient, more focused and most importantly more present to Grace. But at times we were barely holding it together ourselves, I guess given the circumstances we have been doing the best we can. And as Magu Angelou says “Do the best you can until you know better, then when you know better do better!”. Thank goodness the hospital visits have plateaued, and IAHP is our number 1 focus! When we got back from America, Grace came up to me held my hands, looked me in the eye and said “muma, please don’t leave me again, I want to come to Ame-wica”. Yes, my darling Grace this family is sticking together no matter what.
Beautiful Grace, you are such a rare and precious gem. If there is any advice I can give you, it is to LOVE above anything, let your HEART tell you what is right, trust that you have everything you ever need deep within you. Some days you will SHINE brighter than others. Some days flow with such ease, and other days you will have to dig a bit deeper, to find your POWER. This is the natural and ‘real’ part of the human experience. We’ve all been there. We are all working though our stuff, fighting our way to the LIGHT. We are all magnificent beings in this magical mysterious world we call life. Shine on GRACE, through all of life’s trials and tribulations. Trust in the universe, trust in your ‘self’. Honour the brilliant and bright DIVINE soul that you are. After all it’s all loaded into your name. Be compassionate to yourself first. You are so blessed, you are so LOVED. You are a beautiful Goddess, and may life enrich you with all the colours of the rainbow and beyond. Thank you for shining so BRIGHT in my life, with all my love and GRATITUDE, Muma xo
So, we only have 4 more years to make a huge impact to Chiara, we will do whatever it takes to keep her on the IAHP Intensive Home Program, which requires both Mauro and I to be home to deliver it. We are exploring ways of which we can make this happen for Chiara. All of our lives will be impacted hugely if we don’t give her the opportunity now, a few years of intense therapy verses a whole lifetime of complete co-dependency. You soon realise that no materialistic gain can even come close to the importance of health and wellbeing, especially that of your own child. Chiara has the odd’s stacked up against her, and we only have a limited amount of time to try and steer fate into a different direction. So it’s clear that Grace will still have to make some sacrifices ahead for her little sister, our family life will not be like most others in these next few critical years. But together, we will pull off a miracle. Why are we so sure? Because we have GRACE by our sides…x