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.

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  • Hayley x June 24, 2015   Reply →

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

  • Diane Roberts (nana) June 24, 2015   Reply →

    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 ????

  • janetvague June 24, 2015   Reply →

    I really did not know what Bravery and Resilience really meant until I met your family. Truly Inspiring. xxxxxx Thoughts and Prayers often. xxxxxx

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