June 28, 2015
by
wunwabbit
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.
Related
Post tags childhood stroke Healing hope acceptance insights Letting go Love peace poetry special needs transformation trust
Your ways are inspirational, full of love & absolutely beautiful!! Keep shining my friends, we love you and are always here for you xx
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 ????
I really did not know what Bravery and Resilience really meant until I met your family. Truly Inspiring. xxxxxx Thoughts and Prayers often. xxxxxx