Sweet Child Is This

A body twisted into disuse                    
Pulls stares from passersby                    
Disease has stolen all the smiles          
Now hidden behind a lie.                    

But emotions surge and flow below          
A true heart beats strong and defies          
Look a little closer still                    
There’s a twinkle in those eyes.          

Take the time to notice                    
Reach out and do not be afraid          
Sweat heart is there for all to see          
Embrace what God has made.                    

Their time with us is very short          
At times they struggle not to depart          
Life is precious and divine                    
They teach us this from the very start.


Some Explanation:
I work with children who are medically fragile.  Sometimes I find others are afraid to approach or to ask questions.  We welcome the questions.  It is an opportunity to share information and to end the fear.  These children are a blessing in their own way; a chance to look at life and appreciate what we have.  They may struggle at times, but they are happy.  They are children who reach out to the world with the senses that they do have.  Their purity of heart touches me and makes me appreciate all life has to offer. 

This poem is written about a child with Batten’s Disease.  These children are born healthy and begin to grow and develop like most children, but then around two years of age the disease rears its head and pulls them back under.  They are pulled back into a world that hides who they really are – trapping them in a body that will not cooperate and begins to deteriorate.  Smiles are lost, not because they are not happy, but because their muscles refuse to cooperate.  The life expectancy of these children is around the age of ten.