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.


5 thoughts on “Dear Kate.

    • Thanks Viv , we had a lovely day today and for all these lovely things we are all grateful , lots of tlc for Kate today and she enjoyed the fuss bless here , blessings to you and your loved ones from Kathy.


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