finding our way

  • we’ve found ways to change nappies in the prone position
  • we’ve found ways to avoid the myocolonus spasm repercussion
  • we’ve found ways to move clothes over her tight and rigid limbs
  • we’ve found ways to hold her when the cerebral palsy kicks in
  • we’ve found ways to mange her through the night
  • we’ve found ways of avoiding another stressful fight
  • we’ve found ways in coping with very little sleep
  • we’ve found ways to position her body and feet
  • we’ve found ways to position to help her eat
  • we’ve found ways to comfort when her jaw locks on her finger until it bleeds
  • we’ve found ways of coping when life knocks us to our knee’s
  • we’ve found ways to hold her body upright
  • we’ve found ways to manage her sensitivity to light
  • we’ve found ways to give ourselves much needed respite
  • we’ve found ways to move her from one room to the next
  • we’ve found ways to manage her even when feeling perplexed
  • we’ve found ways to manage holding her in the bath
  • we’ve found ways to accept we’re not steering this path
  • we’ve found ways to keep track of the 100’s of specialist appointments
  • we’ve found ways to brace for the huge disappointments
  • we’ve found ways to keep it together when doctors deliver more news
  • we’ve found ways of learning her mysterious cue’s
  • we’ve found ways of holding her unbalanced weight
  • we’ve found ways of not going to bed too late
  • we’ve found ways to let ourselves fully accept
  • we’ve found ways to live so we have no regret
  • we’ve found ways of getting her in and out of the cot without hurting our backs
  • we’ve found ways of living our life to the max
  • we’ve found ways of avoiding the answer to ‘how are you?’
  • we’ve found ways of communicating when Chiara gives us a clue
  • we’ve found ways to let ourselves grieve
  • we’ve found ways to hold on and believe
  • we’ve found ways to trust our intuition
  • we’ve found ways to stop an listen
  • we’ve found ways to try and relieve as much CP suffering and pain
  • we’ve found ways of providing healthy gain
  • we’ve found ways to unlock the tone when her body goes stiff
  • we’ve found ways to manage when this tribe goes adrift
  • we’ve found ways to work together to keep this tribe afloat
  • we’ve found ways of getting on her winter coat
  • we’ve found ways in honouring when we are close to our limits
  • we’ve found ways to care for our gentle spirits
  • we’ve found ways in letting parts of our social life go
  • we’ve found ways of adjusting to this new random flow
  • we’ve found ways to manage visits to local parks
  • we’ve found ways to absorb a sudden shock remark
  • we’ve found ways to deflect when other strong opinions arise
  • we’ve found ways in understanding the journey through our own eyes
  • we’ve found ways to manage our time and space
  • we’ve found ways to know when we all need to embrace
  • we’ve found ways that we never thought possible to exist, thank you to Chiara our divine little gift.

3 Comments »

  1. Your ways are inspirational, full of love & absolutely beautiful!! Keep shining my friends, we love you and are always here for you xx

  2. No one knows what tomorrow holds. Your past tomorrow’s, step by step, have challenged you in ways none of us could have imagined. You have faced and stared down each obstacle/challenge. We could not be more proud of how you/team Chiara have adjusted to the new normal. Love and hugs Dad&Mum 💛💛💛💛

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