The light that shines.. ?
Grace and I made the trek to pick up some special needs equipment for Chiara, that had been donated through ‘I give a buck foundation‘. Big shout out to Beth another PMG muma who thought of Chiara and notified me about it. Beth has also been amazing in offering support and advice! She’s awesome – so is her son who is 9 and doing amazingly – thanks guys you rock!! So the piece of equipment is called a Tumble Form, which is like a little seat that provides support for Chiara, as she is unable to sit unassisted.
We collected the Tumble Form from another family who no longer use it, their daughter is now 7 and walking, yet non-verbal. Her mum welcomed me inside, and it was like a flash into a possible future scenario with Chiara. Perhaps she will walk and it may be a bit jerky like the little girl, and perhaps she may be non-verbal, needing a bib to catch the drool and visual pictures all around the house to aid communication as well as needing an iPad with images and electronic voices etc.
It was confronting, over-whelming yet beautifully real. There we sat, two mums who have never met before, sharing our journeys in between a few tears. She was further down the road than I am, and was able to share so much valuable information with me. It was a reminder (albeit a little harsh on the heart) that each phase of the special needs journey, comes with a whole new set of adjustments and acceptance. There are so many unknowns with Chiara and her future, in terms of medical diagnosis.. there is so much working against her.. that often I feel it would be an absolute miracle of divine intervention if she will indeed.. be able to move through life with the basic human survival skills most of us are blessed with… and I wonder how on earth I will ever find resolve in my heart if she is unable to acquire such vital skills…
Grace and I took off on our adventure back home, via the library where we sat by the open fire and read, and talked, and laughed. She brings so much light, especially at times when I feel a down at the challenges that little Chiara is facing each day. Grace and Chiara both have an absolute endless reservoir of love… and it is an honour to be their mother… and we as a family Mauro, myself and the girls… are blessed to have each other..
Thank you for shining so bright in my world – love muma x