Our beautiful and amazing early intervention key worker visited today for some more equipment trails.

Here is a seat that we can wheel into the shower (once we can fit it through the shower door! a few modifications are required 😉 It also wheels onto the toilet, which is cute and confronting. It’s that whole bitter sweet thing, where the equipment provides support in daily tasks as Chiara gets heavier, yet on the flip side completely freaks me out. A huge lump in my throat appears as the equipment is wheeled in. We talk, I try and remain focus on the practicalities whilst my heart is doing back flips. It breaks my heart, no matter how many days pass I’m not sure I’ll ever get used to this new foreign world of wheel-chairs, standing frames, seating for feeding, showering, toileting. Chiara is a little girl, a toddler who would normally be exploring the world around her through her ability to move, talk, walk. Instead she is to be confined to various contraptions to help her sit, stand, move…

Today I didn’t feel the natural adaptation to this new special needs world. If anything I felt completely over-whelmed, I wanted a magic wand to heal Chiara here and now. To remove all the uncertainty that is attached to her diagnoses, the unknowns which hover over our family. Will our child gain physical independence, will she sit, will she stand, will she walk, will she speak, how long will she remain seizure free… will she live beyond her life expectancy. Today I wanted all the answer’s, or maybe I didn’t want any.

Today it felt difficult to respond to change, but I know that our very survival through this journey, completely relies on it….

“It’s not the strongest of species that survive, nor the most intelligent, but the one most responsive to change” – Charles Darwin

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