Please Watch!

Jodi Champagne, who is the photographer who documented my son Nicky’s life with Epidermolysis Bullosa, was recently interviewed by an online video magazine and this is the interview.

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You Know You’re An EB mom When…

Originally posted by Silvia on her blog: http://blog.silviaskingdom.com/?p=852

  • Whendoc you know more than the real doctors do about your child.
  • When you consider internet friends you’ve never met to be some of your best friends.
  • When you think it’s a good day if you don’t see any blood.
  • When you get asked at least once a week if you are a nurse.
  • When your two-year-old knows how to pop blisters.
  • When you pack for a vacation and the first suit case is filled with supplies and equipment.
  • When you have a legitimate pharmacy in your kitchen and the pharmacist knows your name and welcomes you as if it was Cheers (Norm!).
  • When you constantly get asked “How do you do it?”, and you have no clue either.
  • When your neighbors must think you have an online shopping problem from all the boxes of supplies dropped by your door.
  • When you have your insurance ID number memorized.
  • When the secretary, principal and superintendent of your child’s school know you by name.
  • When you find little pieces of Mepitel laying around the house everywhere.
  • When you developed some serious muscles lifting the wheelchair in and out of the trunk.
  • When you realize you could get a job writing appeals letters to the insurance.
  • When your capacity for hope is bigger than anyone else’s, that you know of.
  • When you can hear your child calling you across the house, with dad snoring next to you.
  • When you make sure your purse has some extra gauze, scissors & syringes.
  • When your child’s doctors take orders from you.
  • When you consider a good day one that your child does not ask for pain meds.
  • When the school nurse for your other (healthy) children know who you are.
  • When you have to stop and explain the Medical Terminology you don’t realize you say to people that are unfamiliar with your child’s condition.
  • When you have more medical supplies than a third world country.
  • When you have lost count of the number of hospital stays, surgeries and procedures that your child has had and you don’t really care to know.
  • When every night you sincerely thank Heaven for allowing you to mother this child for one more day. You know the time will come when it will be over, and you don’t want to miss a minute of this wonderful, painful, challenging, inspiring journey. Because you know, better than almost anyone, how life can change in a moment, an instant, and how none of us are guaranteed a tomorrow.