Tears fall now for you as my mind is bombarded with emotions , anger is vented at that most cruel disease of Epidermolysis Bullosa, your little knees torn to shreds; that only yesterday you were so proud of because as you said “nanny look there all healed , I don’t need any more knee pads now.”
Your two little hands all bruised as your tried to save those two same knees are sleeping now as I pray tomorrow the stinging hurt will fade a little as the days pass and we will go once again on our adventures and you will show me all the magic that I can only see through your eyes.
Then anger passes as it changes to sadness for your mom and dad who feel the sting of all those cuts and would gladly swap them with you if they could. We would all like to wrap you in cotton wool you know but this would break your heart; your heart and spirit are things that EB will not destroy , your spirit is so lovely , you never complain , you are always so full of joy and everything about you is beautiful to behold.
You came home from school today and did not tell anyone about the fall until asked why you were so tired today, when you went to your room to rest. Your mom discovered you in tears and pain as you let out the details of the fall , probably putting off the dreaded bathing of your wounds where you counted to 10 before immersing them in the water needed daily in order to keep them clean. We all salute you Kate ;you are our heroine not because you have EB but because you are so lovely , so vibrant , so caring of others, so kind and knowledgeable about animals , because of your gutsy fearsome ways towards anyone who tries to spoil the adventurer in you , we love you Kate and we are praying hard for a cure for you.
Sometimes I think you will be the scientist who will find how to manufacture that missing gene but in the meantime lets get those two knees healed ASAP and off on the train we will go to see your cousins in Dublin just you and me and Lambie so lets get busy and plan this trip.