Blog · November 9, 2015

You Know You’re an EB Parent When…

  • When you can make a Doctor say “Huh?”
  • You have enough paperwork to wallpaper your house.
  • own more scissors that is either reasonable or anticipated.
  • When you know more than the real doctors do about your child.
  • When you think it’s a good day if you don’t see any blood.
  • Your invitations to any get-togethers have disappeared.
  • You know EB families who lost everything because insurance wouldn’t pay for appropriate care and supplies.
  • When your two-year-old knows how to pop blisters.
  • You have an extensive vocabulary on Medical Terminology.
  • You have a bag full of wound care supplies in the car for emergencies.
  • When you pack for a vacation and the first suitcase is filled with supplies and equipment.
  • You find yourself more accepting of the struggles other parents go through.
  • 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’re unemployed or work part-time and it’s not because of the economy.
  • You’re constantly told chiches such as “God only gives special children to special people” and “Everything Happens for a reason”.
  • You have to explain to people that EB is not contagious.
  • When you constantly get asked “How do you do it?”, and you have no clue either.
  • Every new thing your child can actually do brings your to tears.
  • When your neighbors must think you have an online shopping problem from all the boxes of supplies dropped by your door
  • You have a researched short speech for people who ask about your child’s condition.
  • When you have your insurance ID number memorized.
  • When you know that time does not heal all wounds.
  • You discover that “specialists” really don’t know it all and you’re allowed to disagree with them.
  • When the secretary, principal and superintendent of your child’s school know you by name.
  • The love you have for your child overcomes all of those bad moments and days that occur, more often then you would like to admit.
  • You talk to other EB parents on facebook more than your real life friends.
  • Your retirement plan includes your child.
  • You can see beyond outward appearances.
  • When you find little pieces of Mepitel laying around the house everywhere.
  • You can pronounce “Recessive Dystrophic Epidermolysis Bullosa” correctly because you’re badass.
  • You go hour by hour, not day by day or week by week.
  • When you developed some serious muscles lifting the wheelchair in and out of the trunk.
  • You refuse to commit to anything, ever, unless you’re standing in front of the monthly calendar on your refrigerator.
  • When you realize you could get a job writing appeals letters to the insurance.
  • You have more meaningful conversations with your child’s nurse than your old friends.
  • When your capacity for hope is bigger than anyone else’s, that you know of.
  • You become the pain med fairy.
  • You can’t list all your child’s medications on one hand anymore. Or two.
  • When you can hear your child calling you across the house, with dad snoring next to you.
  • Your other children are far more grown up and mature than they should be.
  • When you make sure your purse has some extra gauze, scissors & syringes.
  • Your Facebook feed is jam packed with stories of kids like your own.
  • When your child’s doctors take orders from you.
  • People ask you how your child is doing and your only honest response is “He’s stable”.
  • You know more about Wound Care supplies than any Nurse.
  • 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 get told all the time how special you are and while you don’t feel special, you like to hear it.
  • When you have more medical supplies in your house than a third world country.
  • When everyone knows your kid even though you have no idea who they are.
  • 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.
  • You celebrate what everyone else just takes for granted.
  • You realize that material wealth don’t mean a thing about how “blessed” you are in life.
  • 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.
  • When you learn to forgive people that leave ugly comments, judge you harshly or give you or your child nasty looks. You are a rock. You do not get dragged into drama. Nothing breaks you. You are strong!

Do you have more to share? Leave them below 🙂
Love and Light,